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Do People Survive This?

Forums Cutaneous Melanoma Community Do People Survive This?

  • Post
    MonicaD
    Participant

      Hi.  My name is Monica.  I'm 33 and was diagnosed on July 13th of this year with malignant melanoma from a mole that was removed from my lower leg.  Last week I had a sentinel node biopsy and am now awaiting results from that to see where we go from here.  The waiting since the initial diagnosis to now has been unbearable and I have another 3-4 weeks to wait for results.  I just need a game plan.  So far I have found this disease much more scary and tiring from a psychological perspective than a physical one.  I feel fine.  My blood

      Hi.  My name is Monica.  I'm 33 and was diagnosed on July 13th of this year with malignant melanoma from a mole that was removed from my lower leg.  Last week I had a sentinel node biopsy and am now awaiting results from that to see where we go from here.  The waiting since the initial diagnosis to now has been unbearable and I have another 3-4 weeks to wait for results.  I just need a game plan.  So far I have found this disease much more scary and tiring from a psychological perspective than a physical one.  I feel fine.  My blood work came back fine.  My lung x-ray came back clear.  I read a copy of my histology report and comparing it to what I've read online, I think at best I'll be Stage IIb since my mole was ulcerated but I have to wait for my node biopsy results to know if it's even a worse stage than that.  What I've found hard in my online searches is that there's really not much out there as testimonials of people who have gone through this journey with melanoma and survived.  I find myself yearning to hear people's stories but I'm having a hard time finding any which I find scary.  So, my question is, have you gone through this and how are you now?  I just want to hear that this can be beaten, even if only beaten a little at a time each time it's beaten.  I know if I survive that this disease is about being diligent and watching your moles, etc., and I know recurrences can and likely will happen, but still… can I beat it?  Have you beaten it?  I just want to hear something positive.  Nobody will tell me anything positive and I'm finding that that is just feeding into the fear that already exists inside of me.  I'm trying to stay positive and mostly I think I'm doing a good job of it but I admit I need help with it sometimes.  I don't need someone to tell me it's all going to be ok because I know there's a chance it won't be but I just want some positive stories I can store in my mind so that when I do feel scared I will have a tool to beat down the negative thoughts and keep hope alive within me.  Thanks. 

    Viewing 56 reply threads
    • Replies
        govols76
        Participant

          It can be beat. I am 33 and my wife is 34. I am writing this sitting with her during her 3rd cycle of Bio-chemo therapy in MD Anderson Cancer Center here in Houston, Texas.  If you have a second and would like to talk please email me at [email protected] . I can walk you through our life since she was diagnosed June 1st of 2010.

           

          Jason

            govols76
            Participant

              Our journey started back in May of 2006. Kind of sounds oddly much like your situation. Daranda was having her yearly Dermatology exam and he found what he called was a suspicious looking mole. He said the same thing, "didn't expect anything…" 3 days past and we got the call that she needed to come in right away. He cut it out and sent it off then called us and said that the margins were good and that everything should be fine and go on with life as normal.

               

              4 years later, she noticed that she was abnormally sore under her arm on her side. Thinking really nothing of it she went and saw her OB-GYN Dr. which we are friends with. Dr. Henderson sent her to get a cat scan just to rule out anything simply because of her melanoma episode some 4 years ago. Like you, we got a call that the tenderness was nothing, however, "we found a spot on your right lung that looks suspicious." Thank God she sent her for a routine cat scan to rule things out. 

              June 1st of this year Daranda had a thoracotomy and removed the nodule on her lung. It was indeed tested and confirmed to be Stage IV Metastic Melanoma. 

              The local Oncologist suggested a year of Interferon treatments(the standard protocol). But once we started contacting Melanoma specialists, we quickly figured out that there was more up-to-date treatments and that there really isn't any data to support that interferon helps with long-term survival. 

              MD Anderson is known for the being the best Cancer Treatment Hospital in the world . So this is where we came.

               Now for the some news you need to understand and maybe think about:

               Once we got to MD Anderson we quickly learned that getting the nodule out wasn't the "Cancer Expert" thing to do. Common sense would tell you that " I've got a cancerous tumor in my lung..get it out and all will be fine, right?…WRONG. We learned that because they removed the tumor the Docs down here couldn't figure out if the treatments were actually working against the cancer or not. They would rather leave it in the body and experiment with several different cancer fighting agents to determine which medicine would react with her tumor most effectively. They had no baseline to go off of.

               Because of all the factors and that surrounds Daranda(34), age, early detection, etc..the Dr. Bedikian told us that if we did nothing at all there wasis a 20% chance that the cancer will never return to her body. With four cycles of  very aggressive Bio-chemo therapy he said it her chances would increase to 60%  that she would have long term survival.   

               Keep in mind I'm not a Health-Care expert by any means but I would highly suggest that you get a PET Scan. This will tell if there is any metabolic activity going on anywhere inside you if you haven't already. 

              Keep your head up and take your time and weigh your options. Melanoma is a tricky little disease that needs the proper attention and sometimes a "outside-the-box" Doctor that understands that Melanoma is different than other cancers and needs to be treated as such. 

              Go to her facebook page and add her as a friend as we'll keep up each other. "Daranda Golden" 

              Have a blessed day, 

              Jason

              gaby
              Participant

                My husband (38 years) was diagnosed with melanoma (ankle) 2 months ago (Breslow 2.3 mm without ulceration, less than 1 mm2 mitosis), we are living in hell, unfortunately the result of the sentinel node biopsy (groin) gave positive 1/4, so in two days will have a surgery on groin node dissection and lymph node biopsy in the stomach.
                We are desperate, we live in Argentina but we are willing to travel anywhere to have the best therapy.
                I spend hours looking for information on the website of testimonies of people living for years with this terrible disease, I think my husband has a terminal illness.
                This year we had planned to look for our first child but instead my husband fighting for his life, it is very sad ….
                Do not know how to face the problem or how to help my husband.
                I was reading that there are several drogras but not which of these is the one for my husband.

                Thank you and best wishes for recovery.
                kisses
                Gaby

                gaby
                Participant

                  My husband (38 years) was diagnosed with melanoma (ankle) 2 months ago (Breslow 2.3 mm without ulceration, less than 1 mm2 mitosis), we are living in hell, unfortunately the result of the sentinel node biopsy (groin) gave positive 1/4, so in two days will have a surgery on groin node dissection and lymph node biopsy in the stomach.
                  We are desperate, we live in Argentina but we are willing to travel anywhere to have the best therapy.
                  I spend hours looking for information on the website of testimonies of people living for years with this terrible disease, I think my husband has a terminal illness.
                  This year we had planned to look for our first child but instead my husband fighting for his life, it is very sad ….
                  Do not know how to face the problem or how to help my husband.
                  I was reading that there are several drogras but not which of these is the one for my husband.

                  Thank you and best wishes for recovery.
                  kisses
                  Gaby

                  gaby
                  Participant

                    My husband (38 years) was diagnosed with melanoma (ankle) 2 months ago (Breslow 2.3 mm without ulceration, less than 1 mm2 mitosis), we are living in hell, unfortunately the result of the sentinel node biopsy (groin) gave positive 1/4, so in two days will have a surgery on groin node dissection and lymph node biopsy in the stomach.
                    We are desperate, we live in Argentina but we are willing to travel anywhere to have the best therapy.
                    I spend hours looking for information on the website of testimonies of people living for years with this terrible disease, I think my husband has a terminal illness.
                    This year we had planned to look for our first child but instead my husband fighting for his life, it is very sad ….
                    Do not know how to face the problem or how to help my husband.
                    I was reading that there are several drogras but not which of these is the one for my husband.

                    Thank you and best wishes for recovery.
                    kisses
                    Gaby

                    govols76
                    Participant

                      Our journey started back in May of 2006. Kind of sounds oddly much like your situation. Daranda was having her yearly Dermatology exam and he found what he called was a suspicious looking mole. He said the same thing, "didn't expect anything…" 3 days past and we got the call that she needed to come in right away. He cut it out and sent it off then called us and said that the margins were good and that everything should be fine and go on with life as normal.

                       

                      4 years later, she noticed that she was abnormally sore under her arm on her side. Thinking really nothing of it she went and saw her OB-GYN Dr. which we are friends with. Dr. Henderson sent her to get a cat scan just to rule out anything simply because of her melanoma episode some 4 years ago. Like you, we got a call that the tenderness was nothing, however, "we found a spot on your right lung that looks suspicious." Thank God she sent her for a routine cat scan to rule things out. 

                      June 1st of this year Daranda had a thoracotomy and removed the nodule on her lung. It was indeed tested and confirmed to be Stage IV Metastic Melanoma. 

                      The local Oncologist suggested a year of Interferon treatments(the standard protocol). But once we started contacting Melanoma specialists, we quickly figured out that there was more up-to-date treatments and that there really isn't any data to support that interferon helps with long-term survival. 

                      MD Anderson is known for the being the best Cancer Treatment Hospital in the world . So this is where we came.

                       Now for the some news you need to understand and maybe think about:

                       Once we got to MD Anderson we quickly learned that getting the nodule out wasn't the "Cancer Expert" thing to do. Common sense would tell you that " I've got a cancerous tumor in my lung..get it out and all will be fine, right?…WRONG. We learned that because they removed the tumor the Docs down here couldn't figure out if the treatments were actually working against the cancer or not. They would rather leave it in the body and experiment with several different cancer fighting agents to determine which medicine would react with her tumor most effectively. They had no baseline to go off of.

                       Because of all the factors and that surrounds Daranda(34), age, early detection, etc..the Dr. Bedikian told us that if we did nothing at all there wasis a 20% chance that the cancer will never return to her body. With four cycles of  very aggressive Bio-chemo therapy he said it her chances would increase to 60%  that she would have long term survival.   

                       Keep in mind I'm not a Health-Care expert by any means but I would highly suggest that you get a PET Scan. This will tell if there is any metabolic activity going on anywhere inside you if you haven't already. 

                      Keep your head up and take your time and weigh your options. Melanoma is a tricky little disease that needs the proper attention and sometimes a "outside-the-box" Doctor that understands that Melanoma is different than other cancers and needs to be treated as such. 

                      Go to her facebook page and add her as a friend as we'll keep up each other. "Daranda Golden" 

                      Have a blessed day, 

                      Jason

                    govols76
                    Participant

                      It can be beat. I am 33 and my wife is 34. I am writing this sitting with her during her 3rd cycle of Bio-chemo therapy in MD Anderson Cancer Center here in Houston, Texas.  If you have a second and would like to talk please email me at [email protected] . I can walk you through our life since she was diagnosed June 1st of 2010.

                       

                      Jason

                      SaraJ
                      Participant

                        There are MANY who survive this and go on to lead long, productive lives. I was diagnosed stage IIIa in Feb 2008. After my surgeries and one month of interferon, I've been NED for 2 1/2 years now!

                        Best of luck in your journey with mel.

                          MonicaD
                          Participant

                            Thanks Anonymous… that's the sort of thing I was hoping to hear.  I'm 33… I still have so many things I want to do, things I thought I had lots of time to do.  I just want to know that this isn't an automatic 'game over.'  I worry about my husband too.  I want him to know that it's ok to hope for the best even if we're currently worried about the worst.  Cancer just plain sucks, doesn't it!?!

                            Thanks again.
                            Monica

                            MonicaD
                            Participant

                              Thanks Anonymous… that's the sort of thing I was hoping to hear.  I'm 33… I still have so many things I want to do, things I thought I had lots of time to do.  I just want to know that this isn't an automatic 'game over.'  I worry about my husband too.  I want him to know that it's ok to hope for the best even if we're currently worried about the worst.  Cancer just plain sucks, doesn't it!?!

                              Thanks again.
                              Monica

                            SaraJ
                            Participant

                              There are MANY who survive this and go on to lead long, productive lives. I was diagnosed stage IIIa in Feb 2008. After my surgeries and one month of interferon, I've been NED for 2 1/2 years now!

                              Best of luck in your journey with mel.

                              washoegal
                              Participant

                                Monica, I'm a rather new player in this too.  I was diagnosed in January.  I had a very small amount of mel spread to lymph nodes under my arm, but initial scans were clear every where else.  So far I am doing great.  I chose a wait and watch approach, as opposed to interferon (those were the only two options offered).  I firmly believe I have an excellent chance of beating this thing as long as I stay on top of it. 

                                Waiting for biopsies and scan results were probably harder on me than any of the surgeries.  Good luck and try to stay positive, just remember even if the node come back positive it is not the end of the world. 

                                  MonicaD
                                  Participant

                                    Thanks, I needed to hear what you had to say too… especially the last part.  I'm trying really hard to stay positive.  I agree with you that the waiting is harder than the surgery.  My leg hurts a lot right now after surgery last week but it doesn't bother me nearly as much as this waiting does.  I just want to know what I'm up against so I can get my game plan and deal with this.  You all are making me feel much less alone and much less scared so thank you.

                                    Monica

                                    MonicaD
                                    Participant

                                      Thanks, I needed to hear what you had to say too… especially the last part.  I'm trying really hard to stay positive.  I agree with you that the waiting is harder than the surgery.  My leg hurts a lot right now after surgery last week but it doesn't bother me nearly as much as this waiting does.  I just want to know what I'm up against so I can get my game plan and deal with this.  You all are making me feel much less alone and much less scared so thank you.

                                      Monica

                                      jwb355
                                      Participant

                                        Hi, I was diagnosed in July of this year with level 4 mel. I guess from what I read they did the wrong thing to me they did the wide exsion and took all the lymphnods under my arm before testing the nods had cancer in the first two nods. the cance doctor is going to do a PET scan and said I should do the interferon.WOW what a slap in the face never thought I would ever get something like this.Never been sick not even much of a cold or anything,now it seems I plan my weeks going to doctor visits and wondering how long I am going to be around to see the grandkids grow up.I might be down but not beaten,just need some light to shine on this because I am in the dark right now.I am 51yrs old hoping to see my 70's

                                        thanks for all the info and hope

                                        Jerry in Ga.

                                        jwb355
                                        Participant

                                          Hi, I was diagnosed in July of this year with level 4 mel. I guess from what I read they did the wrong thing to me they did the wide exsion and took all the lymphnods under my arm before testing the nods had cancer in the first two nods. the cance doctor is going to do a PET scan and said I should do the interferon.WOW what a slap in the face never thought I would ever get something like this.Never been sick not even much of a cold or anything,now it seems I plan my weeks going to doctor visits and wondering how long I am going to be around to see the grandkids grow up.I might be down but not beaten,just need some light to shine on this because I am in the dark right now.I am 51yrs old hoping to see my 70's

                                          thanks for all the info and hope

                                          Jerry in Ga.

                                        washoegal
                                        Participant

                                          Monica, I'm a rather new player in this too.  I was diagnosed in January.  I had a very small amount of mel spread to lymph nodes under my arm, but initial scans were clear every where else.  So far I am doing great.  I chose a wait and watch approach, as opposed to interferon (those were the only two options offered).  I firmly believe I have an excellent chance of beating this thing as long as I stay on top of it. 

                                          Waiting for biopsies and scan results were probably harder on me than any of the surgeries.  Good luck and try to stay positive, just remember even if the node come back positive it is not the end of the world. 

                                          Jim M.
                                          Participant

                                            Hi Monica,

                                             There is always hope. I was diagnosed stage 3C with an unknown primary. It was discovered when it got to the lymph nodes. I had a lymph node dissection, radiation, and 4 doses of Ipilimumab along with vaccines. I've been NED for 2 years, 10 months. There are many here who have been NED longer. Once you find out the results and get a game plan you will feel more in control. If possible find a melanoma specialist, get a 2nd opinion (or more). Consider now what you can do to boost your immune system i.e. food, supplements, exercise.

                                             

                                             Best of success and God Bless,

                                             

                                             Jim M.

                                              Laurie from maine
                                              Participant

                                                Hi Monica,

                                                It is scary and especially at first when you are dealing with your unknown results and reading all there is out there.

                                                I just had my scans done and I am still cancer free(NED) for  1 1/2 years.  I had tumor removed from right groin lymph nodes with escapsular spread.  Did surgery, radiation and 6 months of interferon.  I feel great now and as time passes I find melanoma is moving to the back of my brain and not the first thing I think of all the time. 

                                                good luck, let us know what you find out.

                                                laurie from maine

                                                MonicaD
                                                Participant

                                                  Thanks Laurie.  It's hard to believe that it will move to the back of my brain someday since right now it's pretty much all I think about.  I try to distract myself but I'm sure you must understand how it is at first.  Even when I truly am distracted, it just pops up.  I hate that.

                                                  Thanks for responding.

                                                  Monica from New Brunswick (we're sorta neighbours!)

                                                  MonicaD
                                                  Participant

                                                    Thanks Laurie.  It's hard to believe that it will move to the back of my brain someday since right now it's pretty much all I think about.  I try to distract myself but I'm sure you must understand how it is at first.  Even when I truly am distracted, it just pops up.  I hate that.

                                                    Thanks for responding.

                                                    Monica from New Brunswick (we're sorta neighbours!)

                                                    Laurie from maine
                                                    Participant

                                                      Hi Monica,

                                                      It is scary and especially at first when you are dealing with your unknown results and reading all there is out there.

                                                      I just had my scans done and I am still cancer free(NED) for  1 1/2 years.  I had tumor removed from right groin lymph nodes with escapsular spread.  Did surgery, radiation and 6 months of interferon.  I feel great now and as time passes I find melanoma is moving to the back of my brain and not the first thing I think of all the time. 

                                                      good luck, let us know what you find out.

                                                      laurie from maine

                                                      MonicaD
                                                      Participant

                                                        Thanks Jim.

                                                        MonicaD
                                                        Participant

                                                          Whoops, that ended up in the wrong place.

                                                          MonicaD
                                                          Participant

                                                            Whoops, that ended up in the wrong place.

                                                            MonicaD
                                                            Participant

                                                              Thanks Jim.

                                                            Jim M.
                                                            Participant

                                                              Hi Monica,

                                                               There is always hope. I was diagnosed stage 3C with an unknown primary. It was discovered when it got to the lymph nodes. I had a lymph node dissection, radiation, and 4 doses of Ipilimumab along with vaccines. I've been NED for 2 years, 10 months. There are many here who have been NED longer. Once you find out the results and get a game plan you will feel more in control. If possible find a melanoma specialist, get a 2nd opinion (or more). Consider now what you can do to boost your immune system i.e. food, supplements, exercise.

                                                               

                                                               Best of success and God Bless,

                                                               

                                                               Jim M.

                                                              Sharyn
                                                              Participant

                                                                Hi Monica,

                                                                My mel started in my leg too, but from an unknown primary. The first metastatic lesion I found was on my upper back calf. I was Stage IIIB at diagnosis, and advanced to Stage IV in March 2009. I've had mets to my uterus (had hysterectomy), breast (had mastectomy), lung (it's still there), brain (had whole brain radiation and stereotactic radiation surgery), about 25 excisions from my leg, an Isolated Limb Perfusion in my leg, did 2 clinical trials in PA (PV-10 and OncoVEX), and I am about to start another clinical trial in Montreal in a few weeks from now. I know that sounds like a lot of treatment, but I'm none the worse for wear. I still look like the picture of health, feel fine, and am living a full life. I've far outlived my original prognosis of 3 yrs, and of 6 mos once I developed brain mets almost a year ago. This doesn't have to be a death sentence. I prefer to think of it as a chronic disease. I search relentlessly for treatments and trials,I keep up to date on new research, I stay positive, I eat well, take supplements, and ignore statistics. And I plan on being here for a long time to come. My point is that you have the power to take control of your own destiny by learning about this disease, know what to expect and what to look for, use this board as your source for information, ask questions, etc. You can read my profile, just search my name. Feel free to email me anytime.

                                                                Hugs

                                                                Sharyn

                                                                Stage IV

                                                                  MonicaD
                                                                  Participant

                                                                    Thanks for your reply Sharyn.  After reading your profile, all I can say is wow.  You're obviously a very strong person.  It's nice to hear from someone who is also in Canada.  I'm in NB and didn't realize there were any melanoma specialists nearby.  I may need that info someday.  Thanks for your kind words.

                                                                    Take Care,
                                                                    Monica

                                                                    MonicaD
                                                                    Participant

                                                                      Thanks for your reply Sharyn.  After reading your profile, all I can say is wow.  You're obviously a very strong person.  It's nice to hear from someone who is also in Canada.  I'm in NB and didn't realize there were any melanoma specialists nearby.  I may need that info someday.  Thanks for your kind words.

                                                                      Take Care,
                                                                      Monica

                                                                      Sharyn
                                                                      Participant

                                                                        Hi again Monica,

                                                                        Yes I'm Canadian. I live in Mount Pearl, NL, adjacent to St John's. I went to Halifax for my Isolated Limb Perfusion, and my doctor there is Dr Carman Giacomantonio. He's a real go-getter and a sweetheart, and knows his stuff about melanoma. So if you ever need a specialist, he's not too far. There are a few other people on this board from NB. Elaine Vienneau is one who could probably offer some good contact info for NB doctors. When I go to Montreal, I'll be under the care of Dr. Mihalcioiu for the Ipi trial, but before being referred to him, I was seeing Dr Ari Meguerditchian. (OMG!!! Why can't these docs have normal names like Smith or Jones!!!) Also, check out the Melanoma Network of Canada. It's new, so it doesn't yet have near the membership that this forum has, but we have to start somewhere, and it is all Canadian-based. Melanoma seems so obscure in Canada, and it's hard to find a Canadian specialist, but that's what the MNC is trying to facilitate. It's run by Annette Cyr, also a mel patient, from Oakville ON.  Anyway, keep in touch, and post your results when you get them. You'll feel a lot better after that, whether it's good or bad news. At least you'll be able to celebrate, or devise a game plan. Right now you're in Limbo, and that's the hardest part. Good luck!

                                                                        Sharyn

                                                                        http://melanomanetwork.ca 

                                                                         

                                                                        Sharyn
                                                                        Participant

                                                                          Hi again Monica,

                                                                          Yes I'm Canadian. I live in Mount Pearl, NL, adjacent to St John's. I went to Halifax for my Isolated Limb Perfusion, and my doctor there is Dr Carman Giacomantonio. He's a real go-getter and a sweetheart, and knows his stuff about melanoma. So if you ever need a specialist, he's not too far. There are a few other people on this board from NB. Elaine Vienneau is one who could probably offer some good contact info for NB doctors. When I go to Montreal, I'll be under the care of Dr. Mihalcioiu for the Ipi trial, but before being referred to him, I was seeing Dr Ari Meguerditchian. (OMG!!! Why can't these docs have normal names like Smith or Jones!!!) Also, check out the Melanoma Network of Canada. It's new, so it doesn't yet have near the membership that this forum has, but we have to start somewhere, and it is all Canadian-based. Melanoma seems so obscure in Canada, and it's hard to find a Canadian specialist, but that's what the MNC is trying to facilitate. It's run by Annette Cyr, also a mel patient, from Oakville ON.  Anyway, keep in touch, and post your results when you get them. You'll feel a lot better after that, whether it's good or bad news. At least you'll be able to celebrate, or devise a game plan. Right now you're in Limbo, and that's the hardest part. Good luck!

                                                                          Sharyn

                                                                          http://melanomanetwork.ca 

                                                                           

                                                                        Sharyn
                                                                        Participant

                                                                          Hi Monica,

                                                                          My mel started in my leg too, but from an unknown primary. The first metastatic lesion I found was on my upper back calf. I was Stage IIIB at diagnosis, and advanced to Stage IV in March 2009. I've had mets to my uterus (had hysterectomy), breast (had mastectomy), lung (it's still there), brain (had whole brain radiation and stereotactic radiation surgery), about 25 excisions from my leg, an Isolated Limb Perfusion in my leg, did 2 clinical trials in PA (PV-10 and OncoVEX), and I am about to start another clinical trial in Montreal in a few weeks from now. I know that sounds like a lot of treatment, but I'm none the worse for wear. I still look like the picture of health, feel fine, and am living a full life. I've far outlived my original prognosis of 3 yrs, and of 6 mos once I developed brain mets almost a year ago. This doesn't have to be a death sentence. I prefer to think of it as a chronic disease. I search relentlessly for treatments and trials,I keep up to date on new research, I stay positive, I eat well, take supplements, and ignore statistics. And I plan on being here for a long time to come. My point is that you have the power to take control of your own destiny by learning about this disease, know what to expect and what to look for, use this board as your source for information, ask questions, etc. You can read my profile, just search my name. Feel free to email me anytime.

                                                                          Hugs

                                                                          Sharyn

                                                                          Stage IV

                                                                          Carmon in NM
                                                                          Participant

                                                                            Hi Monica – I was diagnosed 3b in 2008 with an ulcerated primary on my upper left arm. One sentinal node showed two micro metastasis so I had lymph node dissection and like others, chose the 'wait and watch' protocol. I had just advanced to annual scans after nothing but clean scans and blood work for over a year and an undetected brain metastasis sent me in for an emergency craniotomy when it started bleeding. This was in June of this year.

                                                                            In July I had gamma knife surgery to clean up the large lesion, 2×3 centimeters, plus a smaller one detected that was only 4 millimeters. Full body PET/CT/MRI scans showed no other metastasis so we are back on 'wait and watch'. Gamma Knife is 85-89% successful in controlling this kind of lesion so I actually don't feel any worse off than I was before other than a bit of brain trauma! I'll be getting another set of scans the end of September to check for other lesions and to see how the ones hit with the gamma knife are doing.

                                                                            The first six months were the worst for me in dealing with the absolute fear. I highly recommend you find a good counselor with experience in dealing with cancer diagnosis and if you need anti-anxiety meds or antidepressants, ask for them! Stressing your body and spirit any more than necessary doesn't help at all!

                                                                            Now at two years out from diagnosis, I find I have no real fear at all about it. I just glory in living each and every day to its fullest. Maybe if I had been given time to think about having a craniotomy and brain surgery it would have been frightening, but recovery wasn't any worse than any other surgery I've had.

                                                                            Hang in there and don't be afraid to ask for help! Carmon

                                                                            Carmon in NM
                                                                            Participant

                                                                              Hi Monica – I was diagnosed 3b in 2008 with an ulcerated primary on my upper left arm. One sentinal node showed two micro metastasis so I had lymph node dissection and like others, chose the 'wait and watch' protocol. I had just advanced to annual scans after nothing but clean scans and blood work for over a year and an undetected brain metastasis sent me in for an emergency craniotomy when it started bleeding. This was in June of this year.

                                                                              In July I had gamma knife surgery to clean up the large lesion, 2×3 centimeters, plus a smaller one detected that was only 4 millimeters. Full body PET/CT/MRI scans showed no other metastasis so we are back on 'wait and watch'. Gamma Knife is 85-89% successful in controlling this kind of lesion so I actually don't feel any worse off than I was before other than a bit of brain trauma! I'll be getting another set of scans the end of September to check for other lesions and to see how the ones hit with the gamma knife are doing.

                                                                              The first six months were the worst for me in dealing with the absolute fear. I highly recommend you find a good counselor with experience in dealing with cancer diagnosis and if you need anti-anxiety meds or antidepressants, ask for them! Stressing your body and spirit any more than necessary doesn't help at all!

                                                                              Now at two years out from diagnosis, I find I have no real fear at all about it. I just glory in living each and every day to its fullest. Maybe if I had been given time to think about having a craniotomy and brain surgery it would have been frightening, but recovery wasn't any worse than any other surgery I've had.

                                                                              Hang in there and don't be afraid to ask for help! Carmon

                                                                                MonicaD
                                                                                Participant

                                                                                  Thanks Carmon.  I am seriously thinking about the counsellor.  It'd just be nice to talk to someone who doesn't just tell me everything is going to be fine.  I know family and friends mean well when they say it and I know people generally just don't what to say to someone who has a cancer diagnosis, but still… the fear of everything not being fine is real and it would be nice to talk to someone about it.

                                                                                  Thanks for your response.

                                                                                  Monica

                                                                                  MonicaD
                                                                                  Participant

                                                                                    Thanks Carmon.  I am seriously thinking about the counsellor.  It'd just be nice to talk to someone who doesn't just tell me everything is going to be fine.  I know family and friends mean well when they say it and I know people generally just don't what to say to someone who has a cancer diagnosis, but still… the fear of everything not being fine is real and it would be nice to talk to someone about it.

                                                                                    Thanks for your response.

                                                                                    Monica

                                                                                  KatyWI
                                                                                  Participant

                                                                                    Dear Monica,

                                                                                    Life is terminal.  So maybe the right question is not "can I survive this?" but "how much life can I embrace?"  Some of us will get to NED and stay there for the rest of our lives; some of us won't.  All I know is life didn't stop after my stage IIIa diagnosis in 2001, and it didn't stop after my stage IV recurrence last year.  Since 2001, I've…

                                                                                    raised a puppy…done my job…planted flowers…gotten divorced…gone running in the rain…made new friends….fallen in love…gotten married…done the laundry…raced an Ironman triathlon…learned how to fix a flat tire…become an auntie…made dinner…made quilts…made a mess…LIVED.

                                                                                    Is that positive enough for you?

                                                                                    Monica, it's OK to feel scared.  It's OK to wonder why the hell this is happening to you.  I've done plenty of each.  And when you're done, it's also OK to just be you, living your life, loving the people you love.

                                                                                    KatyWI, stage IV, NED four months

                                                                                    KatyWI
                                                                                    Participant

                                                                                      Dear Monica,

                                                                                      Life is terminal.  So maybe the right question is not "can I survive this?" but "how much life can I embrace?"  Some of us will get to NED and stay there for the rest of our lives; some of us won't.  All I know is life didn't stop after my stage IIIa diagnosis in 2001, and it didn't stop after my stage IV recurrence last year.  Since 2001, I've…

                                                                                      raised a puppy…done my job…planted flowers…gotten divorced…gone running in the rain…made new friends….fallen in love…gotten married…done the laundry…raced an Ironman triathlon…learned how to fix a flat tire…become an auntie…made dinner…made quilts…made a mess…LIVED.

                                                                                      Is that positive enough for you?

                                                                                      Monica, it's OK to feel scared.  It's OK to wonder why the hell this is happening to you.  I've done plenty of each.  And when you're done, it's also OK to just be you, living your life, loving the people you love.

                                                                                      KatyWI, stage IV, NED four months

                                                                                        MonicaD
                                                                                        Participant

                                                                                          I like your response.  Thanks.  Life is terminal, isn't it?  That's a great way of looking at it.  And yes, your list is positive enough for me.  I guess in the beginning it's just hard to realize that life doesn't stop after the diagnosis.  I'm a little bit more than a month since my initial doctor's visit that gave me the news and yes, as each day passes it does get easier.  Having surgery last week sorta put me back to the beginning a bit though I think…waiting for news and feeling acute pain that reminds me of what is going on.  It's hard to move on when you don't know if you're "allowed" to yet.  I find it very encouraging to hear everyone's stories though… how long they've dealt with this and how it's going now.  It's nice to know you're not alone even when sometimes you feel you are.

                                                                                          Thanks again,
                                                                                          Monica 

                                                                                          MonicaD
                                                                                          Participant

                                                                                            I like your response.  Thanks.  Life is terminal, isn't it?  That's a great way of looking at it.  And yes, your list is positive enough for me.  I guess in the beginning it's just hard to realize that life doesn't stop after the diagnosis.  I'm a little bit more than a month since my initial doctor's visit that gave me the news and yes, as each day passes it does get easier.  Having surgery last week sorta put me back to the beginning a bit though I think…waiting for news and feeling acute pain that reminds me of what is going on.  It's hard to move on when you don't know if you're "allowed" to yet.  I find it very encouraging to hear everyone's stories though… how long they've dealt with this and how it's going now.  It's nice to know you're not alone even when sometimes you feel you are.

                                                                                            Thanks again,
                                                                                            Monica 

                                                                                            mryouwish
                                                                                            Participant

                                                                                              I was diagnosed 10/2009 stage3a

                                                                                              I did one month iv interfeon and I'm at 6 months with home injections

                                                                                              Melnoma is a tough road noone has anwers for you and finding info is difficult there are no guarentees. Your sick of being sick and you don't know if what you are doing is worth it. But your too scared to stop treatment because what if's… Everyone is different and deals with it in there own way.  I find that people around me forget that I'm sick because I try to lead a normal life. It is a fight for me everyday to get through my day with a smile on my face. But I am too scared too stop.  My biggest thing is feeling alone my family really isn't there for me and my boyfriend thinks if you dont talk about it it will go away.  I feel like everyone is tired of me not feeling good so I fake through my day. I consider myself a strong woman and I think you need to know you are not alone there are so many of us who are searching and wanting answers but I find melnoma is no guarantees and you need to hold your head up and go at it one day at time. If you want to know what I have delt with treatment let me know.

                                                                                               

                                                                                              mryouwish
                                                                                              Participant

                                                                                                I was diagnosed 10/2009 stage3a

                                                                                                I did one month iv interfeon and I'm at 6 months with home injections

                                                                                                Melnoma is a tough road noone has anwers for you and finding info is difficult there are no guarentees. Your sick of being sick and you don't know if what you are doing is worth it. But your too scared to stop treatment because what if's… Everyone is different and deals with it in there own way.  I find that people around me forget that I'm sick because I try to lead a normal life. It is a fight for me everyday to get through my day with a smile on my face. But I am too scared too stop.  My biggest thing is feeling alone my family really isn't there for me and my boyfriend thinks if you dont talk about it it will go away.  I feel like everyone is tired of me not feeling good so I fake through my day. I consider myself a strong woman and I think you need to know you are not alone there are so many of us who are searching and wanting answers but I find melnoma is no guarantees and you need to hold your head up and go at it one day at time. If you want to know what I have delt with treatment let me know.

                                                                                                 

                                                                                                Sharyn
                                                                                                Participant

                                                                                                  Katy,

                                                                                                  I just had to butt in and say what an inspiring response you gave to Monica — and the rest of us. You're so right — Life IS terminal. And maybe a cancer diagnosis is not so much a death sentence as a wake-up call to kick ourselves in the pants and get the most out of life while we can. There's a Newfie expression we use with the same sentiment, but not as eloquently expressed — "None of us are gettin' outta here alive." Thanks for such a positive spin on things.

                                                                                                  Sharyn

                                                                                                  Stage IV

                                                                                                  Jim in Denver
                                                                                                  Participant

                                                                                                    You are so right, Katy and Sharyn! 

                                                                                                    Jim in Denver
                                                                                                    Participant

                                                                                                      You are so right, Katy and Sharyn! 

                                                                                                      Sharyn
                                                                                                      Participant

                                                                                                        Katy,

                                                                                                        I just had to butt in and say what an inspiring response you gave to Monica — and the rest of us. You're so right — Life IS terminal. And maybe a cancer diagnosis is not so much a death sentence as a wake-up call to kick ourselves in the pants and get the most out of life while we can. There's a Newfie expression we use with the same sentiment, but not as eloquently expressed — "None of us are gettin' outta here alive." Thanks for such a positive spin on things.

                                                                                                        Sharyn

                                                                                                        Stage IV

                                                                                                        MariaH
                                                                                                        Participant

                                                                                                          Dear Monica,

                                                                                                          On a mental level, KatyWI's advice is the best out there.  Waiting for the SNB results is awful.  I can tell you that my husband and I were a wreck waiting for his results – and the results we got were what we had feared.  All three nodes taken came back positive.  Doctor tells you "50/50" chance.  So what did we do?  Bought a camper and took the kids camping every chance we got.  Took a vacation to the beach.  We continue to live life to the fullest.  Dave's currently NED (stage III) and has been for two years now.  And I'm really glad we did what Katy did – lived. 

                                                                                                          MariaH
                                                                                                          Participant

                                                                                                            Dear Monica,

                                                                                                            On a mental level, KatyWI's advice is the best out there.  Waiting for the SNB results is awful.  I can tell you that my husband and I were a wreck waiting for his results – and the results we got were what we had feared.  All three nodes taken came back positive.  Doctor tells you "50/50" chance.  So what did we do?  Bought a camper and took the kids camping every chance we got.  Took a vacation to the beach.  We continue to live life to the fullest.  Dave's currently NED (stage III) and has been for two years now.  And I'm really glad we did what Katy did – lived. 

                                                                                                            Mugglemum
                                                                                                            Participant

                                                                                                              Just reading this now. Your comments made me smile. Found some odd miles on my husband and are going to a dermatologist this week. I am terrified that one of them will be Mel. A co worker of mine was just diagnosed with stage 3 or 4, which is what got me looking at my husbands moles better. I know I should not be worried yet, but can't help it. I love him dearly. I am just wish seeing how you have been doing??? Are you still NED?

                                                                                                              Mugglemum
                                                                                                              Participant

                                                                                                                Just reading this now. Your comments made me smile. Found some odd miles on my husband and are going to a dermatologist this week. I am terrified that one of them will be Mel. A co worker of mine was just diagnosed with stage 3 or 4, which is what got me looking at my husbands moles better. I know I should not be worried yet, but can't help it. I love him dearly. I am just wish seeing how you have been doing??? Are you still NED?

                                                                                                                Mugglemum
                                                                                                                Participant

                                                                                                                  Just reading this now. Your comments made me smile. Found some odd miles on my husband and are going to a dermatologist this week. I am terrified that one of them will be Mel. A co worker of mine was just diagnosed with stage 3 or 4, which is what got me looking at my husbands moles better. I know I should not be worried yet, but can't help it. I love him dearly. I am just wish seeing how you have been doing??? Are you still NED?

                                                                                                                Meg1414
                                                                                                                Participant

                                                                                                                  Monica,

                                                                                                                  Hi! I see you've gotten a ton of feedback, but I just wanted to comment fast. My diagnosis came after they removed a mole from the top of my foot. It had spread to 1 lymph node in my groin and they took 16 or 17 more out. It was stage IV and I did one year of interferon. That was 8 years ago in May. I'm 30 now and I just do my yearly visits to the dermatologist. So don't worry; people definitely beat this! It seriously sucks sometimes, but I figure, you do what you have to do and get it done. But  never look at it as something that can't be beat, because I'm still here 8 years later! And this site is amazing. There are so many people that have gone through the same experiences and they are all so nice. Feel free to email me if you ever want to. [email protected] Good luck and stay positive!

                                                                                                                  Meg1414
                                                                                                                  Participant

                                                                                                                    Monica,

                                                                                                                    Hi! I see you've gotten a ton of feedback, but I just wanted to comment fast. My diagnosis came after they removed a mole from the top of my foot. It had spread to 1 lymph node in my groin and they took 16 or 17 more out. It was stage IV and I did one year of interferon. That was 8 years ago in May. I'm 30 now and I just do my yearly visits to the dermatologist. So don't worry; people definitely beat this! It seriously sucks sometimes, but I figure, you do what you have to do and get it done. But  never look at it as something that can't be beat, because I'm still here 8 years later! And this site is amazing. There are so many people that have gone through the same experiences and they are all so nice. Feel free to email me if you ever want to. [email protected] Good luck and stay positive!

                                                                                                                    Joyce
                                                                                                                    Participant

                                                                                                                      Never give up. Dick was diagnosed stage 4 right out of the box in 12/2002. He had mets in his intestines. Several surgeries and a few trials later, he has been NED for 4 years. We just got the results of his last scans! And our oncologist for the first time was very positive about the new drugs on the market.  

                                                                                                                       

                                                                                                                      Joyce from MA

                                                                                                                        MonicaD
                                                                                                                        Participant

                                                                                                                          Thanks Joyce.

                                                                                                                          I have found it very reassuring to hear from so many different people diagnosed at different stages, etc.  Thanks so much for taking the time to respond to my post (I mean that to everyone else as well).

                                                                                                                          Monica

                                                                                                                          MonicaD
                                                                                                                          Participant

                                                                                                                            Thanks Joyce.

                                                                                                                            I have found it very reassuring to hear from so many different people diagnosed at different stages, etc.  Thanks so much for taking the time to respond to my post (I mean that to everyone else as well).

                                                                                                                            Monica

                                                                                                                          Joyce
                                                                                                                          Participant

                                                                                                                            Never give up. Dick was diagnosed stage 4 right out of the box in 12/2002. He had mets in his intestines. Several surgeries and a few trials later, he has been NED for 4 years. We just got the results of his last scans! And our oncologist for the first time was very positive about the new drugs on the market.  

                                                                                                                             

                                                                                                                            Joyce from MA

                                                                                                                            DeborahG
                                                                                                                            Participant

                                                                                                                              Monica, I was diagnosed Stage 2 in July 1996 and going strong.  I didn't have an SNB because they were just coming into use.  I have not done any trials, treatments, etc. Just keeping an eye on things.  So, yes, there are plenty of survivors. I don't consider myself cured – just going strong.

                                                                                                                              DeborahG
                                                                                                                              Participant

                                                                                                                                Monica, I was diagnosed Stage 2 in July 1996 and going strong.  I didn't have an SNB because they were just coming into use.  I have not done any trials, treatments, etc. Just keeping an eye on things.  So, yes, there are plenty of survivors. I don't consider myself cured – just going strong.

                                                                                                                                whack-a-mole
                                                                                                                                Participant

                                                                                                                                  My dear, you most certainly CAN survive this! I was diagnosed with stage 3 in 1985, and in fact have had four metastases, the last one in 1992. I was not given very good statistics as you can imagine, but then my doctor told me that I was NOT a statistic. I have gone through the bone-chilling fear, the anger, the jealousy of those who were well….every feeling imaginable. I can tell you that you will come out of this journey a FEARLESS warrior in this life, who has already faced the devil and won! Nothing much bothers me these days, and getting old is such a blessing! Take heart young lady-life awaits!  cindy

                                                                                                                                  whack-a-mole
                                                                                                                                  Participant

                                                                                                                                    My dear, you most certainly CAN survive this! I was diagnosed with stage 3 in 1985, and in fact have had four metastases, the last one in 1992. I was not given very good statistics as you can imagine, but then my doctor told me that I was NOT a statistic. I have gone through the bone-chilling fear, the anger, the jealousy of those who were well….every feeling imaginable. I can tell you that you will come out of this journey a FEARLESS warrior in this life, who has already faced the devil and won! Nothing much bothers me these days, and getting old is such a blessing! Take heart young lady-life awaits!  cindy

                                                                                                                                    dian in spokane
                                                                                                                                    Participant

                                                                                                                                      Hi Monica,

                                                                                                                                      I was diagnosed when I was 30 yrs old, so I remember how scary it is to have such a diagnosis at such a young age. I'm 57 yrs old now, and still waltzing around with melanoma.

                                                                                                                                      And I intend to be around for quite a while yet.

                                                                                                                                      Yes, a lot of people win. PLENTY of people never even see a recurrence of their melanoma once it's been surgically resected.

                                                                                                                                      Hope you are one of them! Good luck!

                                                                                                                                      dian in spokane

                                                                                                                                      Stage IV, NED 15 months

                                                                                                                                        gaby
                                                                                                                                        Participant

                                                                                                                                          Hi, I understand but want to talk about this terrible disease but I am very sad.My husband (38 years) was diagnosed with melanoma (ankle) 2 months ago (Breslow 2.3 mm without ulceration, less than 1 mm2 mitosis), we are living in hell, unfortunately the result of the sentinel node biopsy (groin) gave positive 1/4, so in two days will have a surgery on groin node dissection and lymph node biopsy in the stomach.
                                                                                                                                          We are desperate, we live in Argentina but we are willing to travel anywhere to have the best therapy.
                                                                                                                                          I spend hours looking for information on the website of testimonies of people living for years with this terrible disease, I think my husband has a terminal illness.
                                                                                                                                          This year we had planned to look for our first child but instead my husband fighting for his life, it is very sad ….
                                                                                                                                          Do not know how to face the problem or how to help my husband.
                                                                                                                                          I was reading that there are several drogras but not which of these is the one for my husband.

                                                                                                                                          Thank you and best wishes for recovery.
                                                                                                                                          kisses
                                                                                                                                          Gaby

                                                                                                                                          gaby
                                                                                                                                          Participant

                                                                                                                                            Hi, I understand but want to talk about this terrible disease but I am very sad.My husband (38 years) was diagnosed with melanoma (ankle) 2 months ago (Breslow 2.3 mm without ulceration, less than 1 mm2 mitosis), we are living in hell, unfortunately the result of the sentinel node biopsy (groin) gave positive 1/4, so in two days will have a surgery on groin node dissection and lymph node biopsy in the stomach.
                                                                                                                                            We are desperate, we live in Argentina but we are willing to travel anywhere to have the best therapy.
                                                                                                                                            I spend hours looking for information on the website of testimonies of people living for years with this terrible disease, I think my husband has a terminal illness.
                                                                                                                                            This year we had planned to look for our first child but instead my husband fighting for his life, it is very sad ….
                                                                                                                                            Do not know how to face the problem or how to help my husband.
                                                                                                                                            I was reading that there are several drogras but not which of these is the one for my husband.

                                                                                                                                            Thank you and best wishes for recovery.
                                                                                                                                            kisses
                                                                                                                                            Gaby

                                                                                                                                            gaby
                                                                                                                                            Participant

                                                                                                                                              Hi, I understand but want to talk about this terrible disease but I am very sad.My husband (38 years) was diagnosed with melanoma (ankle) 2 months ago (Breslow 2.3 mm without ulceration, less than 1 mm2 mitosis), we are living in hell, unfortunately the result of the sentinel node biopsy (groin) gave positive 1/4, so in two days will have a surgery on groin node dissection and lymph node biopsy in the stomach.
                                                                                                                                              We are desperate, we live in Argentina but we are willing to travel anywhere to have the best therapy.
                                                                                                                                              I spend hours looking for information on the website of testimonies of people living for years with this terrible disease, I think my husband has a terminal illness.
                                                                                                                                              This year we had planned to look for our first child but instead my husband fighting for his life, it is very sad ….
                                                                                                                                              Do not know how to face the problem or how to help my husband.
                                                                                                                                              I was reading that there are several drogras but not which of these is the one for my husband.

                                                                                                                                              Thank you and best wishes for recovery.
                                                                                                                                              kisses
                                                                                                                                              Gaby

                                                                                                                                              gaby
                                                                                                                                              Participant

                                                                                                                                                Hi, I understand but want to talk about this terrible disease but I am very sad.My husband (38 years) was diagnosed with melanoma (ankle) 2 months ago (Breslow 2.3 mm without ulceration, less than 1 mm2 mitosis), we are living in hell, unfortunately the result of the sentinel node biopsy (groin) gave positive 1/4, so in two days will have a surgery on groin node dissection and lymph node biopsy in the stomach.
                                                                                                                                                We are desperate, we live in Argentina but we are willing to travel anywhere to have the best therapy.
                                                                                                                                                I spend hours looking for information on the website of testimonies of people living for years with this terrible disease, I think my husband has a terminal illness.
                                                                                                                                                This year we had planned to look for our first child but instead my husband fighting for his life, it is very sad ….
                                                                                                                                                Do not know how to face the problem or how to help my husband.
                                                                                                                                                I was reading that there are several drogras but not which of these is the one for my husband.

                                                                                                                                                Thank you and best wishes for recovery.
                                                                                                                                                kisses
                                                                                                                                                Gaby

                                                                                                                                                gaby
                                                                                                                                                Participant

                                                                                                                                                  Hi, I understand but want to talk about this terrible disease but I am very sad.My husband (38 years) was diagnosed with melanoma (ankle) 2 months ago (Breslow 2.3 mm without ulceration, less than 1 mm2 mitosis), we are living in hell, unfortunately the result of the sentinel node biopsy (groin) gave positive 1/4, so in two days will have a surgery on groin node dissection and lymph node biopsy in the stomach.
                                                                                                                                                  We are desperate, we live in Argentina but we are willing to travel anywhere to have the best therapy.
                                                                                                                                                  I spend hours looking for information on the website of testimonies of people living for years with this terrible disease, I think my husband has a terminal illness.
                                                                                                                                                  This year we had planned to look for our first child but instead my husband fighting for his life, it is very sad ….
                                                                                                                                                  Do not know how to face the problem or how to help my husband.
                                                                                                                                                  I was reading that there are several drogras but not which of these is the one for my husband.

                                                                                                                                                  Thank you and best wishes for recovery.
                                                                                                                                                  kisses
                                                                                                                                                  Gaby

                                                                                                                                                  gaby
                                                                                                                                                  Participant

                                                                                                                                                    Hi, I understand but want to talk about this terrible disease but I am very sad.My husband (38 years) was diagnosed with melanoma (ankle) 2 months ago (Breslow 2.3 mm without ulceration, less than 1 mm2 mitosis), we are living in hell, unfortunately the result of the sentinel node biopsy (groin) gave positive 1/4, so in two days will have a surgery on groin node dissection and lymph node biopsy in the stomach.
                                                                                                                                                    We are desperate, we live in Argentina but we are willing to travel anywhere to have the best therapy.
                                                                                                                                                    I spend hours looking for information on the website of testimonies of people living for years with this terrible disease, I think my husband has a terminal illness.
                                                                                                                                                    This year we had planned to look for our first child but instead my husband fighting for his life, it is very sad ….
                                                                                                                                                    Do not know how to face the problem or how to help my husband.
                                                                                                                                                    I was reading that there are several drogras but not which of these is the one for my husband.

                                                                                                                                                    Thank you and best wishes for recovery.
                                                                                                                                                    kisses
                                                                                                                                                    Gaby

                                                                                                                                                  dian in spokane
                                                                                                                                                  Participant

                                                                                                                                                    Hi Monica,

                                                                                                                                                    I was diagnosed when I was 30 yrs old, so I remember how scary it is to have such a diagnosis at such a young age. I'm 57 yrs old now, and still waltzing around with melanoma.

                                                                                                                                                    And I intend to be around for quite a while yet.

                                                                                                                                                    Yes, a lot of people win. PLENTY of people never even see a recurrence of their melanoma once it's been surgically resected.

                                                                                                                                                    Hope you are one of them! Good luck!

                                                                                                                                                    dian in spokane

                                                                                                                                                    Stage IV, NED 15 months

                                                                                                                                                    Helen (
                                                                                                                                                    Participant

                                                                                                                                                      Hi Monica.  I was diagnosed with a tumour in my lymph node in 2006 and then one in my lung in 2007.  I know what you are feeling.  I also found it hard to find a success story.  The fear was consuming.  I sit here now, 3 years free  from melanoma.  I am happy and strong and life is great.  My children are almost 8 and 10 and we have spent the last few months travelling, swimming and hiking.  I wish you all the best.  

                                                                                                                                                      Helen (
                                                                                                                                                      Participant

                                                                                                                                                        Hi Monica.  I was diagnosed with a tumour in my lymph node in 2006 and then one in my lung in 2007.  I know what you are feeling.  I also found it hard to find a success story.  The fear was consuming.  I sit here now, 3 years free  from melanoma.  I am happy and strong and life is great.  My children are almost 8 and 10 and we have spent the last few months travelling, swimming and hiking.  I wish you all the best.  

                                                                                                                                                        AndyD
                                                                                                                                                        Participant

                                                                                                                                                          Hey Monica,

                                                                                                                                                          When I was 32, I was diagnosed with malignant melanoma from a mole that was removed from my left lower leg (same as you). You are not alone, and your story makes me feel less alone. I'm 46 now. I personally prefer the slogan "cancer can be thwarted". You asked about a game plan, here is how my game has gone over the years, I hope this info is useful for you.

                                                                                                                                                          1. Surgery
                                                                                                                                                          If you can catch cancer early and remove the tissue, it's probably the best treatment. I like to use an analogy of our front lawn. Grass is our body and once in a while we can get a dandelion (cancer). If we can remove (surgery) the dandelion while it's yellow, we stop it from spreading. If the dandelion poofs into seeds and spreads, then surgery stops working and we have to get out the weed-killer (chemo).

                                                                                                                                                          I was lucky that my first surgery kept me cancer-free for 7 years. The cancer came back when I was 41-ish. I was able to have additional surgeries for the next two years but then my leg was running out of skin lol.

                                                                                                                                                          2. Bio-Chemo, IL2, ipi
                                                                                                                                                          Surgery works for a while but then cancer can return faster and in more locations. Your doctor will make the call when surgery is no longer an option. Sometimes your doctor may offer you chemo along with surgery early on. I was offered interferon early on. After one treatment I said "I'd rather be dead than continue with this treatment" lol It's a personal choice. These days one of the more effective next treatments is bio-chemo which usually requires a 5 day hospital stay (repeated at intervals). Bio-chemo is usually a cocktail of 5-7 cancer fighting drugs given through intravenous. If the treatment shows signs of working, you continue for months to a year. Treatment is stopped if it is not working or your body can't handle it. I found recovery from bio-chemo much harder than the treatment itself.

                                                                                                                                                          Interlukin 2 is then offered after bio-chemo. Then have to be given in this order…I forget why. IL2 is usually given again with a hospital stays of approx 5 nights. The treatment is harder in the hospital, but much easier to recover from at home. They make you very sick, but you are so drugged you can barely remember it. Again, treatments continue as long as you improve and as long as your body can take it.

                                                                                                                                                          Ipilimumab is a new and exciting drug that is about to be approved by the Fed in December. You are kind of lucky that you may have this treatment available to you early on. I'm not sure if doctors will offer this alone, or with chemo? The drug has side effects but is generally much more fun than bio-chemo or IL2. I'm currently in an ipi trial as I have exhasuted bio and IL2 at this point.

                                                                                                                                                          If I could give you only one piece of advice at the stage you're at, it would be to routinely feel your body for new lumps, especially in the area where they are going to remove your tumor (and around the surgery scar). Also monitor your groin area on the same side as the tumor since the lymph nodes in that area can eventually get a tumor. I was constantly feeling my calf and would find new tumors when they were tiny. I'd call my surgeon and he would remove them in a week or less. I'm certain this tumor finding dilegence combined with quick surgery, kept me alive longer, thwarting the cancer spread.

                                                                                                                                                          You aren't alone.

                                                                                                                                                          *hugs*

                                                                                                                                                           

                                                                                                                                                          Andy

                                                                                                                                                            elainejorden
                                                                                                                                                            Participant

                                                                                                                                                              Hi Monica,I just read your post and see you are from NB. I live in saint John and started my melanoma journey 21 years ago with a  skin lesion on my back,Dr.LaLande (a plastic surgeon )removed it as well as another on my lower left leg,which required a skin graft and 7 more benign lesions from my other leg.No treatment followed and it reoccured in my right inguanal lymph nodes 2 years later.More surgery to remove the nodes and 1/2 of those removed were malignant.This was followed by 5 weeks of radiation,and back in those days I was offered a drug called levamisol taken by mouth 2days per week increasing the dose on the second day.This enhanced the immune system to do its job.I took this for 3 years and literally had the flue like symptoms  every weekend  so I could continue working as a nurse..This gave me a 10 year remission and lots of lymph edema in my leg which I now control with physio and compression hose.In July 2004 it returned with a vengence throughout my abdomen,wrapped around my aorta and attached to my right kidney.Nobody in Saint John or Halifax would consider surgery."What to do?"I contacted the Canadian Cancer society in Toronto and got an update of the latest treatments and clinical trials available in Canada,talked with my oncologist Dr. Margo Burnell in SJ and her advise was to go to the US for a clinical trial however I couldn't afford the cost  so I made contact with a Dr. Sal Verma in Ottawa that I heard deals with melanoma pts.When I first got diagnosed I had corresponded with Premier Bourrasa of Quebec,with the plan that whatever treatment he took would be the best and I too wanted it.I learned his Dr. had been Dr. Verma initially, followed by treatment in the US.Unfortunately he didn't survive. Since I was given such a grave prognosis I researched and chose an aggressive form of chemo that was offered to me.It was called The Dartmouth Protocol a combination of carmustine,cystplatin and DTIC taken IV over 3 days every 3 weeks when my blood picture permitted.I took this for 19 months and had a 6 week break and continued with just DTIC for another 12 months.I've had a great response with shrinking of all tumors,areas gone from some organs.My 6 month prognosis has stretched into 6 years.I consulted  again with an oncology surgeon in Ottawa who suggested my residual areas are to widespread for surgery and as melanomas bleed so much we should play a wait and see game as all are small ,stable or gone.I do have side effects from the chemo but can deal with that.I live a very full and active life and am just back form a month travelling in Europe.I'm not sure what's keeping me here but I'm loving every minute of it and each day i'm alive it takes me that much closer to better treatments and even a cure.Best of luck.Elaine

                                                                                                                                                              elainejorden
                                                                                                                                                              Participant

                                                                                                                                                                Hi Monica,I just read your post and see you are from NB. I live in saint John and started my melanoma journey 21 years ago with a  skin lesion on my back,Dr.LaLande (a plastic surgeon )removed it as well as another on my lower left leg,which required a skin graft and 7 more benign lesions from my other leg.No treatment followed and it reoccured in my right inguanal lymph nodes 2 years later.More surgery to remove the nodes and 1/2 of those removed were malignant.This was followed by 5 weeks of radiation,and back in those days I was offered a drug called levamisol taken by mouth 2days per week increasing the dose on the second day.This enhanced the immune system to do its job.I took this for 3 years and literally had the flue like symptoms  every weekend  so I could continue working as a nurse..This gave me a 10 year remission and lots of lymph edema in my leg which I now control with physio and compression hose.In July 2004 it returned with a vengence throughout my abdomen,wrapped around my aorta and attached to my right kidney.Nobody in Saint John or Halifax would consider surgery."What to do?"I contacted the Canadian Cancer society in Toronto and got an update of the latest treatments and clinical trials available in Canada,talked with my oncologist Dr. Margo Burnell in SJ and her advise was to go to the US for a clinical trial however I couldn't afford the cost  so I made contact with a Dr. Sal Verma in Ottawa that I heard deals with melanoma pts.When I first got diagnosed I had corresponded with Premier Bourrasa of Quebec,with the plan that whatever treatment he took would be the best and I too wanted it.I learned his Dr. had been Dr. Verma initially, followed by treatment in the US.Unfortunately he didn't survive. Since I was given such a grave prognosis I researched and chose an aggressive form of chemo that was offered to me.It was called The Dartmouth Protocol a combination of carmustine,cystplatin and DTIC taken IV over 3 days every 3 weeks when my blood picture permitted.I took this for 19 months and had a 6 week break and continued with just DTIC for another 12 months.I've had a great response with shrinking of all tumors,areas gone from some organs.My 6 month prognosis has stretched into 6 years.I consulted  again with an oncology surgeon in Ottawa who suggested my residual areas are to widespread for surgery and as melanomas bleed so much we should play a wait and see game as all are small ,stable or gone.I do have side effects from the chemo but can deal with that.I live a very full and active life and am just back form a month travelling in Europe.I'm not sure what's keeping me here but I'm loving every minute of it and each day i'm alive it takes me that much closer to better treatments and even a cure.Best of luck.Elaine

                                                                                                                                                              AndyD
                                                                                                                                                              Participant

                                                                                                                                                                Hey Monica,

                                                                                                                                                                When I was 32, I was diagnosed with malignant melanoma from a mole that was removed from my left lower leg (same as you). You are not alone, and your story makes me feel less alone. I'm 46 now. I personally prefer the slogan "cancer can be thwarted". You asked about a game plan, here is how my game has gone over the years, I hope this info is useful for you.

                                                                                                                                                                1. Surgery
                                                                                                                                                                If you can catch cancer early and remove the tissue, it's probably the best treatment. I like to use an analogy of our front lawn. Grass is our body and once in a while we can get a dandelion (cancer). If we can remove (surgery) the dandelion while it's yellow, we stop it from spreading. If the dandelion poofs into seeds and spreads, then surgery stops working and we have to get out the weed-killer (chemo).

                                                                                                                                                                I was lucky that my first surgery kept me cancer-free for 7 years. The cancer came back when I was 41-ish. I was able to have additional surgeries for the next two years but then my leg was running out of skin lol.

                                                                                                                                                                2. Bio-Chemo, IL2, ipi
                                                                                                                                                                Surgery works for a while but then cancer can return faster and in more locations. Your doctor will make the call when surgery is no longer an option. Sometimes your doctor may offer you chemo along with surgery early on. I was offered interferon early on. After one treatment I said "I'd rather be dead than continue with this treatment" lol It's a personal choice. These days one of the more effective next treatments is bio-chemo which usually requires a 5 day hospital stay (repeated at intervals). Bio-chemo is usually a cocktail of 5-7 cancer fighting drugs given through intravenous. If the treatment shows signs of working, you continue for months to a year. Treatment is stopped if it is not working or your body can't handle it. I found recovery from bio-chemo much harder than the treatment itself.

                                                                                                                                                                Interlukin 2 is then offered after bio-chemo. Then have to be given in this order…I forget why. IL2 is usually given again with a hospital stays of approx 5 nights. The treatment is harder in the hospital, but much easier to recover from at home. They make you very sick, but you are so drugged you can barely remember it. Again, treatments continue as long as you improve and as long as your body can take it.

                                                                                                                                                                Ipilimumab is a new and exciting drug that is about to be approved by the Fed in December. You are kind of lucky that you may have this treatment available to you early on. I'm not sure if doctors will offer this alone, or with chemo? The drug has side effects but is generally much more fun than bio-chemo or IL2. I'm currently in an ipi trial as I have exhasuted bio and IL2 at this point.

                                                                                                                                                                If I could give you only one piece of advice at the stage you're at, it would be to routinely feel your body for new lumps, especially in the area where they are going to remove your tumor (and around the surgery scar). Also monitor your groin area on the same side as the tumor since the lymph nodes in that area can eventually get a tumor. I was constantly feeling my calf and would find new tumors when they were tiny. I'd call my surgeon and he would remove them in a week or less. I'm certain this tumor finding dilegence combined with quick surgery, kept me alive longer, thwarting the cancer spread.

                                                                                                                                                                You aren't alone.

                                                                                                                                                                *hugs*

                                                                                                                                                                 

                                                                                                                                                                Andy

                                                                                                                                                                Bruce in NH
                                                                                                                                                                Participant

                                                                                                                                                                  Hello Monica,

                                                                                                                                                                  I am a little late to respond to your posting but wanted to share a few notes with you. I was diagnosed with Stage 1 melanoma in October, 2000, Stage 3B in July, 2003 and Stage 4 in December, 2008. Like you I spent a lot of time searching for people who have lived long lifetimes with this disease. Initially I searched for books but most are written by physicians, very few written by patients in their own words. Fortunately I found this site many years ago and  have given and received advice many times on various melanoma related topics. There is always hope when confronted with cancer, but like you I like to read success stories.

                                                                                                                                                                  So I have started writing a book for people like you entitled Surviving Melanoma – A Story of Hope. I hope to have it published by Christmas as I am about halfway through writing it. The first three chapters will chronicle my life to age 55 which lays the foundation for what it takes to beat this disease physically, mentally and emotionally. The next three chapters take the reader through each stage of melanoma that I experienced. The seventh chapter will highlight personal stories from surviivors and caregivers in their own words to describe their experiences in living with hope. I will be asking for inputs from members of the MRF to assist me in this chapter. The last chapter will be titled Celebration of life – details yet to be finalized.

                                                                                                                                                                  So for you and for others who long for hope, I hope to make a difference in their lives. Your messages and others inspire me to keep writing. Stay strong and know that there are many people like me who continue enjoying life to the fullest – you should too, Monica.

                                                                                                                                                                  Take care,

                                                                                                                                                                  Bruce in NH

                                                                                                                                                                  10 Year Melanoma Survivor

                                                                                                                                                                   

                                                                                                                                                                    SuzannefromCA
                                                                                                                                                                    Participant

                                                                                                                                                                      Hi Monica,

                                                                                                                                                                      There are many of us survivors out here. I was first diagnosed in 2003, in 2006 went to stage IV. I did 18 months of Biochemotherapy. It alone shrunk my lung met away. I am 4 years NED. There is hope! I always kept and am still keeping a positive attitude. At the time of my stage IV diagnosis my oncologist said I had 6 to 9 months to live if I did not choose to do the Biochemo. Here I am, I just celebrated my 50th birthday in August.

                                                                                                                                                                      Please keep positive and surround yourself with positive people. Keep us posted!

                                                                                                                                                                      I am in the San Francisco Bay Area and had my treatment at the California Pacific Medical Center.

                                                                                                                                                                      Hugs,

                                                                                                                                                                      Suzanne

                                                                                                                                                                      SuzannefromCA
                                                                                                                                                                      Participant

                                                                                                                                                                        Hi Monica,

                                                                                                                                                                        There are many of us survivors out here. I was first diagnosed in 2003, in 2006 went to stage IV. I did 18 months of Biochemotherapy. It alone shrunk my lung met away. I am 4 years NED. There is hope! I always kept and am still keeping a positive attitude. At the time of my stage IV diagnosis my oncologist said I had 6 to 9 months to live if I did not choose to do the Biochemo. Here I am, I just celebrated my 50th birthday in August.

                                                                                                                                                                        Please keep positive and surround yourself with positive people. Keep us posted!

                                                                                                                                                                        I am in the San Francisco Bay Area and had my treatment at the California Pacific Medical Center.

                                                                                                                                                                        Hugs,

                                                                                                                                                                        Suzanne

                                                                                                                                                                      Bruce in NH
                                                                                                                                                                      Participant

                                                                                                                                                                        Hello Monica,

                                                                                                                                                                        I am a little late to respond to your posting but wanted to share a few notes with you. I was diagnosed with Stage 1 melanoma in October, 2000, Stage 3B in July, 2003 and Stage 4 in December, 2008. Like you I spent a lot of time searching for people who have lived long lifetimes with this disease. Initially I searched for books but most are written by physicians, very few written by patients in their own words. Fortunately I found this site many years ago and  have given and received advice many times on various melanoma related topics. There is always hope when confronted with cancer, but like you I like to read success stories.

                                                                                                                                                                        So I have started writing a book for people like you entitled Surviving Melanoma – A Story of Hope. I hope to have it published by Christmas as I am about halfway through writing it. The first three chapters will chronicle my life to age 55 which lays the foundation for what it takes to beat this disease physically, mentally and emotionally. The next three chapters take the reader through each stage of melanoma that I experienced. The seventh chapter will highlight personal stories from surviivors and caregivers in their own words to describe their experiences in living with hope. I will be asking for inputs from members of the MRF to assist me in this chapter. The last chapter will be titled Celebration of life – details yet to be finalized.

                                                                                                                                                                        So for you and for others who long for hope, I hope to make a difference in their lives. Your messages and others inspire me to keep writing. Stay strong and know that there are many people like me who continue enjoying life to the fullest – you should too, Monica.

                                                                                                                                                                        Take care,

                                                                                                                                                                        Bruce in NH

                                                                                                                                                                        10 Year Melanoma Survivor

                                                                                                                                                                         

                                                                                                                                                                        JulieO
                                                                                                                                                                        Participant

                                                                                                                                                                          Monica

                                                                                                                                                                          You CAN survive.  I am stage IIIB and my lesion was deep and ulcerated on my left ankle.  I had a melanoma positive node in my knee based on the Sentinal Node Biopsy.  I did one month high dose interferon, then made it through 4-5 more months of low dose and then stopped.  That was 6 years ago and I have never looked back, other than to appreciate EVERY day of my life, love my family even more and value all the lessons that experience taught me.  Probably the best advice I believe I could give you is to try, try, try not to let the unknown about your melanoma consume you.  I know you are waiting for some results right now, which is tough.  But in the bigger picture of your diagnosis, trying to figure out exactly what is going to happen to you is impossible.  It is a complete waste of time and in fact, if you let your thoughts consume you and over take your life right now, the melanoma has partially already "grown" inside of you by making you worry so much you give up actually living your life right now.  I know how upsetting this dx is and how hard it is to try to live a normal life right now…..but once you realize that worrying or researching constantly about your disease will NOT change your outcome, you will start to feel free to live life again.  When you really think about it, NObody on this earth knows what their future holds…when they will get sick or when they may be in an accident or when they may even die.  Being dx with cancer sure seems to put you closer to some of these worries, but until that day really comes, worrying about it will not make it come later or sooner.  Melanoma is such an unpredictable cancer….it's hard to hold on to the statistics because as you will see here on this website, they are beaten every day.  So if you can, try to let go of figuring this all out….take each day as it comes, do what treatment you feel comfortable with, and run with it.  Hang in there, let people help you, and take good care of yourself.  I'm sorry that you are dealing with this.  

                                                                                                                                                                          JulieO
                                                                                                                                                                          Participant

                                                                                                                                                                            Monica

                                                                                                                                                                            You CAN survive.  I am stage IIIB and my lesion was deep and ulcerated on my left ankle.  I had a melanoma positive node in my knee based on the Sentinal Node Biopsy.  I did one month high dose interferon, then made it through 4-5 more months of low dose and then stopped.  That was 6 years ago and I have never looked back, other than to appreciate EVERY day of my life, love my family even more and value all the lessons that experience taught me.  Probably the best advice I believe I could give you is to try, try, try not to let the unknown about your melanoma consume you.  I know you are waiting for some results right now, which is tough.  But in the bigger picture of your diagnosis, trying to figure out exactly what is going to happen to you is impossible.  It is a complete waste of time and in fact, if you let your thoughts consume you and over take your life right now, the melanoma has partially already "grown" inside of you by making you worry so much you give up actually living your life right now.  I know how upsetting this dx is and how hard it is to try to live a normal life right now…..but once you realize that worrying or researching constantly about your disease will NOT change your outcome, you will start to feel free to live life again.  When you really think about it, NObody on this earth knows what their future holds…when they will get sick or when they may be in an accident or when they may even die.  Being dx with cancer sure seems to put you closer to some of these worries, but until that day really comes, worrying about it will not make it come later or sooner.  Melanoma is such an unpredictable cancer….it's hard to hold on to the statistics because as you will see here on this website, they are beaten every day.  So if you can, try to let go of figuring this all out….take each day as it comes, do what treatment you feel comfortable with, and run with it.  Hang in there, let people help you, and take good care of yourself.  I'm sorry that you are dealing with this.  

                                                                                                                                                                            jtheisen29
                                                                                                                                                                            Participant

                                                                                                                                                                              Hi Monica,

                                                                                                                                                                               

                                                                                                                                                                              First off I just want to say that I don't have melanoma ( although sometimes I wish had it over my twin sister) My sister Sara was diagnosed last Sept 09 with stage 3b melanoma while 5months pregnant. What a horrible time for our family! Not only did she have to face decisions about her life but also the life of her unborn child. So much negative news the first few months of her diagnoses not to mention all the internet stuff that you can dig up that you wish you hadn't. I became addicted to researching therapies and statistics and prognosis and survivor stories. And I couldn't find the happy ending stories I so desperatly needed at the time. It was very easy to get depressed with all the stuff I found on melanoma on the internet. But I met some really amazing people who are survivors in the past year and one and told me that the reason that we don't find too many stories about the people surviving this disease is because usually they are not on the melanoma sites. I could handle that as an answer:) I say surround yourself with friends and family and other survivors and keep living and dreaming! And my sister had a beautiful healthy baby boy Landon Cooper and also has a 6yr old. She started her year long interferon treatment and has 51 more shots to go. And I must say that not only is she coping on treatment she is living life!! She is playing volleyball 2 times a week and being the best mom, wife, sister, friend that she can be. I don't know if her melanoma will come back and I don't know if it won't. But I am happy that she is happy and we learned one valuable lesson.. to live each day fully and love the most you can love and smile the most you can smile. Will be sure to keep you in our prayers. Keep your head up!!

                                                                                                                                                                               

                                                                                                                                                                              Jessica Theisen

                                                                                                                                                                              Previous caregiver to my twin sister who is now 1 year N.E.D!!!

                                                                                                                                                                              jtheisen29
                                                                                                                                                                              Participant

                                                                                                                                                                                Hi Monica,

                                                                                                                                                                                 

                                                                                                                                                                                First off I just want to say that I don't have melanoma ( although sometimes I wish had it over my twin sister) My sister Sara was diagnosed last Sept 09 with stage 3b melanoma while 5months pregnant. What a horrible time for our family! Not only did she have to face decisions about her life but also the life of her unborn child. So much negative news the first few months of her diagnoses not to mention all the internet stuff that you can dig up that you wish you hadn't. I became addicted to researching therapies and statistics and prognosis and survivor stories. And I couldn't find the happy ending stories I so desperatly needed at the time. It was very easy to get depressed with all the stuff I found on melanoma on the internet. But I met some really amazing people who are survivors in the past year and one and told me that the reason that we don't find too many stories about the people surviving this disease is because usually they are not on the melanoma sites. I could handle that as an answer:) I say surround yourself with friends and family and other survivors and keep living and dreaming! And my sister had a beautiful healthy baby boy Landon Cooper and also has a 6yr old. She started her year long interferon treatment and has 51 more shots to go. And I must say that not only is she coping on treatment she is living life!! She is playing volleyball 2 times a week and being the best mom, wife, sister, friend that she can be. I don't know if her melanoma will come back and I don't know if it won't. But I am happy that she is happy and we learned one valuable lesson.. to live each day fully and love the most you can love and smile the most you can smile. Will be sure to keep you in our prayers. Keep your head up!!

                                                                                                                                                                                 

                                                                                                                                                                                Jessica Theisen

                                                                                                                                                                                Previous caregiver to my twin sister who is now 1 year N.E.D!!!

                                                                                                                                                                                NancyGM
                                                                                                                                                                                Participant

                                                                                                                                                                                  Monica, I felt the same way you are feeling when I was diagnosed in 2003 with an ulcerated primary stage IIa. Mine did progress to stage IV late 2006. I did a 11 months of a chemo pill and was pronounced NED (no evidence of disease) in late 2007. I have remained NED for almost 3 years now.

                                                                                                                                                                                  It can and does happen that some have a full and durable response to treatment-even at stage IV. Hold on to that thought even though the stats are grim. Best of luck to you.

                                                                                                                                                                                  NancyGM
                                                                                                                                                                                  Participant

                                                                                                                                                                                    Monica, I felt the same way you are feeling when I was diagnosed in 2003 with an ulcerated primary stage IIa. Mine did progress to stage IV late 2006. I did a 11 months of a chemo pill and was pronounced NED (no evidence of disease) in late 2007. I have remained NED for almost 3 years now.

                                                                                                                                                                                    It can and does happen that some have a full and durable response to treatment-even at stage IV. Hold on to that thought even though the stats are grim. Best of luck to you.

                                                                                                                                                                                    Nicky
                                                                                                                                                                                    Participant

                                                                                                                                                                                      Hi Monica.  I am 10 and a half years NED, diagnosed at 35 yrs old.  I also had a melanoma on my leg which metastisized to my right groin lymph node. (Stage III).  I try to post every now and then but tend not to read this board too often as it can get you down reading about the ones who don't survive.  I would say that  a percentage of survivors are just getting on with life and not posting too much here.  Just remember your diagnosis may be totally different to someone else.  Try to be optimistic and keep your immune system strong.  I've always had the attitude that the beast is not going to get me.  It can be scary when you are first diagnosed and waiting for the results of test after test can be extremely stressful but you can get lots of support here and I'm sure that the hospital can help you with counselling support services.  I recommend that to anyone first diagnosed with this disease.  All the best.  My patnet is under "Nicky"

                                                                                                                                                                                      Nicky
                                                                                                                                                                                      Participant

                                                                                                                                                                                        Hi Monica.  I am 10 and a half years NED, diagnosed at 35 yrs old.  I also had a melanoma on my leg which metastisized to my right groin lymph node. (Stage III).  I try to post every now and then but tend not to read this board too often as it can get you down reading about the ones who don't survive.  I would say that  a percentage of survivors are just getting on with life and not posting too much here.  Just remember your diagnosis may be totally different to someone else.  Try to be optimistic and keep your immune system strong.  I've always had the attitude that the beast is not going to get me.  It can be scary when you are first diagnosed and waiting for the results of test after test can be extremely stressful but you can get lots of support here and I'm sure that the hospital can help you with counselling support services.  I recommend that to anyone first diagnosed with this disease.  All the best.  My patnet is under "Nicky"

                                                                                                                                                                                        lhaley
                                                                                                                                                                                        Participant

                                                                                                                                                                                          Monica,

                                                                                                                                                                                          I just finished reading so many success stories in response to your post, now I'll add mine. I was diagnosed at age 26. I'm now 57!!  I've been stage IV for 4years but still going strong.  My advice is to be viligent and to know your body. I've had 5 recurrances and I picked up 4 of them, a scan picked up the 5th.  Become your own advocate.

                                                                                                                                                                                          I'm sorry you've had to join us but I hope that you will see that there is much hope out there. It's now been 31 years since my original diagnosis. During that time I've had a son, watched him grow up, graduate from college and now I'm a grandmother. I went back for my masters and will soon be celebrating my 36th wedding anniversary. Oh yeah, we just moved and are remodeling a 50 year old house (now that has been stressful). 

                                                                                                                                                                                          Don't stop living while your waiting,

                                                                                                                                                                                          Linda

                                                                                                                                                                                          lhaley
                                                                                                                                                                                          Participant

                                                                                                                                                                                            Monica,

                                                                                                                                                                                            I just finished reading so many success stories in response to your post, now I'll add mine. I was diagnosed at age 26. I'm now 57!!  I've been stage IV for 4years but still going strong.  My advice is to be viligent and to know your body. I've had 5 recurrances and I picked up 4 of them, a scan picked up the 5th.  Become your own advocate.

                                                                                                                                                                                            I'm sorry you've had to join us but I hope that you will see that there is much hope out there. It's now been 31 years since my original diagnosis. During that time I've had a son, watched him grow up, graduate from college and now I'm a grandmother. I went back for my masters and will soon be celebrating my 36th wedding anniversary. Oh yeah, we just moved and are remodeling a 50 year old house (now that has been stressful). 

                                                                                                                                                                                            Don't stop living while your waiting,

                                                                                                                                                                                            Linda

                                                                                                                                                                                            Diana W
                                                                                                                                                                                            Participant

                                                                                                                                                                                              Hi Monica,

                                                                                                                                                                                              Your post and the subsequent discussion prompted me to respond.  I appreciate the many thoughts expressed here with this question.  I have come to the point with my MM along the lines of what Katy said.  Basically, most people know that everyone dies but it seems some sort of 1 dimensional idea ie; not facing ones own death just thinking of others that are sick or dying…others….  Suddenly living with cancer it forces one to get really 3 dimensional with death.  Everyone is terminal.  I could be surviving mm and die from something else altogether.  We just dont know where life will take us so what is important is where we go, what road we choose to travel. 

                                                                                                                                                                                              It took me a long time to fully embrace that concept.  For me it is a much more comfortable place to be, the other option is to live in fear.  Living in fear detracts from my ablility to enjoy life…so I had to break through to another place…another focus.

                                                                                                                                                                                              I was terrified the first time they told me..I was only 25 and I had stage 2.  25 years later it came back at stage 3c..once again I was initially terrified, that was 21 months ago.  I believe that if I have to deal with it again and most likely I will have to..I will  be able to recapture my focus on life and joy in the face of it much quicker than I did the first 2 times. 

                                                                                                                                                                                              So, we all have to keep thanking God for each healthy day we enjoy and keep praying for those in treatment and praying for a cure for this awful disease.

                                                                                                                                                                                              I found this poem recently and I think it says it all.

                                                                                                                                                                                              Death is not the end
                                                                                                                                                                                              Death can never be the end.

                                                                                                                                                                                              Death is the road.
                                                                                                                                                                                              Life is the traveller.
                                                                                                                                                                                              The Soul is the Guide

                                                                                                                                                                                              Our mind thinks of death.
                                                                                                                                                                                              Our heart thinks of life
                                                                                                                                                                                              Our soul thinks of Immortality. 

                                                                                                                                                                                              – By: Sri Chinmoy

                                                                                                                                                                                              Diana W
                                                                                                                                                                                              Participant

                                                                                                                                                                                                Hi Monica,

                                                                                                                                                                                                Your post and the subsequent discussion prompted me to respond.  I appreciate the many thoughts expressed here with this question.  I have come to the point with my MM along the lines of what Katy said.  Basically, most people know that everyone dies but it seems some sort of 1 dimensional idea ie; not facing ones own death just thinking of others that are sick or dying…others….  Suddenly living with cancer it forces one to get really 3 dimensional with death.  Everyone is terminal.  I could be surviving mm and die from something else altogether.  We just dont know where life will take us so what is important is where we go, what road we choose to travel. 

                                                                                                                                                                                                It took me a long time to fully embrace that concept.  For me it is a much more comfortable place to be, the other option is to live in fear.  Living in fear detracts from my ablility to enjoy life…so I had to break through to another place…another focus.

                                                                                                                                                                                                I was terrified the first time they told me..I was only 25 and I had stage 2.  25 years later it came back at stage 3c..once again I was initially terrified, that was 21 months ago.  I believe that if I have to deal with it again and most likely I will have to..I will  be able to recapture my focus on life and joy in the face of it much quicker than I did the first 2 times. 

                                                                                                                                                                                                So, we all have to keep thanking God for each healthy day we enjoy and keep praying for those in treatment and praying for a cure for this awful disease.

                                                                                                                                                                                                I found this poem recently and I think it says it all.

                                                                                                                                                                                                Death is not the end
                                                                                                                                                                                                Death can never be the end.

                                                                                                                                                                                                Death is the road.
                                                                                                                                                                                                Life is the traveller.
                                                                                                                                                                                                The Soul is the Guide

                                                                                                                                                                                                Our mind thinks of death.
                                                                                                                                                                                                Our heart thinks of life
                                                                                                                                                                                                Our soul thinks of Immortality. 

                                                                                                                                                                                                – By: Sri Chinmoy

                                                                                                                                                                                                bluepeople
                                                                                                                                                                                                Participant

                                                                                                                                                                                                   Hi Monica,

                                                                                                                                                                                                  I'm so glad you wrote this post.  It has been wonderful and informative reading all of these responses.  My husband was recently diagnosed and it is so scary right now, wondering what is going to happen.  My biggest struggle is knowing what to say to my husband.  I don't think there is anything that I can say that can make him feel better.  I just try to be there and be as supportive as I can, but I can't help but feel like there is something I should be doing.  He doesn't talk about his "feelings", and honestly I don't think he even knows how he feels right now.  All I do know is that we have a 1-yr old son that needs his dad to stay put, so I just pray and hope that everything will turn out all right.  This message board has offered alot of support and advice in the short time since I joined it, and I'm very glad I found it.  It is really great hearing other stories and words of hope!  Thank you and good luck in your experience. 

                                                                                                                                                                                                  Akilyn

                                                                                                                                                                                                  bluepeople
                                                                                                                                                                                                  Participant

                                                                                                                                                                                                     Hi Monica,

                                                                                                                                                                                                    I'm so glad you wrote this post.  It has been wonderful and informative reading all of these responses.  My husband was recently diagnosed and it is so scary right now, wondering what is going to happen.  My biggest struggle is knowing what to say to my husband.  I don't think there is anything that I can say that can make him feel better.  I just try to be there and be as supportive as I can, but I can't help but feel like there is something I should be doing.  He doesn't talk about his "feelings", and honestly I don't think he even knows how he feels right now.  All I do know is that we have a 1-yr old son that needs his dad to stay put, so I just pray and hope that everything will turn out all right.  This message board has offered alot of support and advice in the short time since I joined it, and I'm very glad I found it.  It is really great hearing other stories and words of hope!  Thank you and good luck in your experience. 

                                                                                                                                                                                                    Akilyn

                                                                                                                                                                                                      Mugglemum
                                                                                                                                                                                                      Participant

                                                                                                                                                                                                        Just reading these responses. If you are still on this board, I was just wondering how your husband is doing now that it is 5 years later?

                                                                                                                                                                                                        Mugglemum
                                                                                                                                                                                                        Participant

                                                                                                                                                                                                          Just reading these responses. If you are still on this board, I was just wondering how your husband is doing now that it is 5 years later?

                                                                                                                                                                                                          Mugglemum
                                                                                                                                                                                                          Participant

                                                                                                                                                                                                            Just reading these responses. If you are still on this board, I was just wondering how your husband is doing now that it is 5 years later?

                                                                                                                                                                                                          stillstanding
                                                                                                                                                                                                          Participant

                                                                                                                                                                                                            Yes you can survive this disease.  I was diagnosed in 2003 have gone through 4 different treatments, 2 surgeries and am happy to save live a happy active lifestyle.  Get as much information as you can, stay positive, and surround your self with loved ones.  

                                                                                                                                                                                                            stillstanding
                                                                                                                                                                                                            Participant

                                                                                                                                                                                                              Yes you can survive this disease.  I was diagnosed in 2003 have gone through 4 different treatments, 2 surgeries and am happy to save live a happy active lifestyle.  Get as much information as you can, stay positive, and surround your self with loved ones.  

                                                                                                                                                                                                              Carmon in NM
                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                Hi Monica – the fear and anxiety you are experiencing is something we have all gone through. This may sound hard to believe right now but that part does get better, no matter what stage you are diagnosed at.

                                                                                                                                                                                                                I was diagnosed stage 3b 11/2008 from an ulcerated lesion on my left arm. The SNB revealed micro mets in one node and all full body scans were clear. Like others, I chose the watch and wait approach since there was around a 75% chance that I would not have a recurrance.

                                                                                                                                                                                                                In June of this year two brain metastasis were found moving me to stage 4. Believe it or not, I wasn't and haven't been the least bit afraid. In fact, I am happier and more positive than I have ever been in my life. I had a craniotomy followed by Gamma Knife Surgery to destroy the smaller tumor and to clean up the edges of the larger one. Three brain MRIs later, I have no new brain tumors and both of the old ones are considered to be scar tissue now.

                                                                                                                                                                                                                In September,  full body follow up scan showed a tumor on my right adrenal gland. Like others have said, even though the tumor and adrenal gland could have been surgically removed, We chose to follow a system approach to find what would kill my particular brand of mel so that we had tools to fight with should there be more recurrances.

                                                                                                                                                                                                                I chose a chemical drug trial that combines three cancer fighting drugs and the fantastic news is that after only two infusions, the tumor on my adrenal gland had shrunk by more than 50%! I am now halfway through the trial with my fourth infusion due next Wednesday and two more after that. Once I am through with the trial and my body has a chance to recover, then surgery will be done to remove the adrenal gland and anything left of the tumor.

                                                                                                                                                                                                                It is all doeable and if you get yourself into a good cancer center and stay on top of watching for recurrances, there are so many more options out there now than there ever were before. What is important is to catch it as fast as you can should you have it come back.

                                                                                                                                                                                                                My best wishes and prayers to you – the part you are experiencing now, waiting and terrified, was so much worse for me than any of the actual treatments, including brain surgery! Carmon in NM

                                                                                                                                                                                                                Carmon in NM
                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                  Hi Monica – the fear and anxiety you are experiencing is something we have all gone through. This may sound hard to believe right now but that part does get better, no matter what stage you are diagnosed at.

                                                                                                                                                                                                                  I was diagnosed stage 3b 11/2008 from an ulcerated lesion on my left arm. The SNB revealed micro mets in one node and all full body scans were clear. Like others, I chose the watch and wait approach since there was around a 75% chance that I would not have a recurrance.

                                                                                                                                                                                                                  In June of this year two brain metastasis were found moving me to stage 4. Believe it or not, I wasn't and haven't been the least bit afraid. In fact, I am happier and more positive than I have ever been in my life. I had a craniotomy followed by Gamma Knife Surgery to destroy the smaller tumor and to clean up the edges of the larger one. Three brain MRIs later, I have no new brain tumors and both of the old ones are considered to be scar tissue now.

                                                                                                                                                                                                                  In September,  full body follow up scan showed a tumor on my right adrenal gland. Like others have said, even though the tumor and adrenal gland could have been surgically removed, We chose to follow a system approach to find what would kill my particular brand of mel so that we had tools to fight with should there be more recurrances.

                                                                                                                                                                                                                  I chose a chemical drug trial that combines three cancer fighting drugs and the fantastic news is that after only two infusions, the tumor on my adrenal gland had shrunk by more than 50%! I am now halfway through the trial with my fourth infusion due next Wednesday and two more after that. Once I am through with the trial and my body has a chance to recover, then surgery will be done to remove the adrenal gland and anything left of the tumor.

                                                                                                                                                                                                                  It is all doeable and if you get yourself into a good cancer center and stay on top of watching for recurrances, there are so many more options out there now than there ever were before. What is important is to catch it as fast as you can should you have it come back.

                                                                                                                                                                                                                  My best wishes and prayers to you – the part you are experiencing now, waiting and terrified, was so much worse for me than any of the actual treatments, including brain surgery! Carmon in NM

                                                                                                                                                                                                                  JakeinNY
                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                    Hi Monica.

                                                                                                                                                                                                                    There are published statistics on the internet showing the survivor rates for the different stages of this crap. Obviously, stage 1 has the best rate and IV has the worst, but none of them are 0% and I believe that embracing a really healthy lifestyle helps your chances. No guarantees, but thousands, probably millions have survived long term. Take it very seriously and yet continue to enjoy the special things in life.

                                                                                                                                                                                                                    Best wishes for a long life.

                                                                                                                                                                                                                    JakeinNY
                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                      Hi Monica.

                                                                                                                                                                                                                      There are published statistics on the internet showing the survivor rates for the different stages of this crap. Obviously, stage 1 has the best rate and IV has the worst, but none of them are 0% and I believe that embracing a really healthy lifestyle helps your chances. No guarantees, but thousands, probably millions have survived long term. Take it very seriously and yet continue to enjoy the special things in life.

                                                                                                                                                                                                                      Best wishes for a long life.

                                                                                                                                                                                                                      LynnLuc
                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                        mine came on my neck in 92/93…came back on my neck in 96. Had it removed in 2000 with 5 sential lymph nodes. Came back 2009 and had radaition and chemo . Had surgery March 2010 and been without evidence of disease since then, Currently in a clinical trial with the hope of keeping it from returning…. happy to be alive and kicking!

                                                                                                                                                                                                                        LynnLuc
                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                          mine came on my neck in 92/93…came back on my neck in 96. Had it removed in 2000 with 5 sential lymph nodes. Came back 2009 and had radaition and chemo . Had surgery March 2010 and been without evidence of disease since then, Currently in a clinical trial with the hope of keeping it from returning…. happy to be alive and kicking!

                                                                                                                                                                                                                          Dgentz
                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                            Hi there! 

                                                                                                                                                                                                                            First of all, I think you'll find (or at least I have) that many people come to these boards for support and knowledge during treatment and diagnosis…seems to me that once people are NED they tend to drift away, so I wouldn't use boards as evidence of non-survival if that makes sense. ๐Ÿ™‚ 

                                                                                                                                                                                                                            I was diagnosed in July 2009 – mole removed from right thigh, wide area excision, sentinel node biopsy, removal of 8 lymph nodes in groin. No further treatment. Until this February when I was noticing pain in my groin area – similar to where one would have an ovarian cyst. Turns out it was the melanoma in a few more nodes. We attempted surgery to remove, but unfortunately, the nodes with the mel in them were "initmately involved" with major veins and vessels and was unresectable. 

                                                                                                                                                                                                                            I started with Zelboraf and have been on the full dose for a couple of weeks now (we eased into it). I'll have a scan in early October to see how it's going. 

                                                                                                                                                                                                                            It's scary, no doubt, and the waiting is the hardest part. But there are survivors and we're all fighting here.  We may not be in as large of numbers as those pink folks, but don't be discouraged. 

                                                                                                                                                                                                                            Dgentz
                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                              Hi there! 

                                                                                                                                                                                                                              First of all, I think you'll find (or at least I have) that many people come to these boards for support and knowledge during treatment and diagnosis…seems to me that once people are NED they tend to drift away, so I wouldn't use boards as evidence of non-survival if that makes sense. ๐Ÿ™‚ 

                                                                                                                                                                                                                              I was diagnosed in July 2009 – mole removed from right thigh, wide area excision, sentinel node biopsy, removal of 8 lymph nodes in groin. No further treatment. Until this February when I was noticing pain in my groin area – similar to where one would have an ovarian cyst. Turns out it was the melanoma in a few more nodes. We attempted surgery to remove, but unfortunately, the nodes with the mel in them were "initmately involved" with major veins and vessels and was unresectable. 

                                                                                                                                                                                                                              I started with Zelboraf and have been on the full dose for a couple of weeks now (we eased into it). I'll have a scan in early October to see how it's going. 

                                                                                                                                                                                                                              It's scary, no doubt, and the waiting is the hardest part. But there are survivors and we're all fighting here.  We may not be in as large of numbers as those pink folks, but don't be discouraged. 

                                                                                                                                                                                                                              Dgentz
                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                Hi there! 

                                                                                                                                                                                                                                First of all, I think you'll find (or at least I have) that many people come to these boards for support and knowledge during treatment and diagnosis…seems to me that once people are NED they tend to drift away, so I wouldn't use boards as evidence of non-survival if that makes sense. ๐Ÿ™‚ 

                                                                                                                                                                                                                                I was diagnosed in July 2009 – mole removed from right thigh, wide area excision, sentinel node biopsy, removal of 8 lymph nodes in groin. No further treatment. Until this February when I was noticing pain in my groin area – similar to where one would have an ovarian cyst. Turns out it was the melanoma in a few more nodes. We attempted surgery to remove, but unfortunately, the nodes with the mel in them were "initmately involved" with major veins and vessels and was unresectable. 

                                                                                                                                                                                                                                I started with Zelboraf and have been on the full dose for a couple of weeks now (we eased into it). I'll have a scan in early October to see how it's going. 

                                                                                                                                                                                                                                It's scary, no doubt, and the waiting is the hardest part. But there are survivors and we're all fighting here.  We may not be in as large of numbers as those pink folks, but don't be discouraged. 

                                                                                                                                                                                                                                Penny_L
                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                  Hi Monica,  my son had stage 4 Malignant Nodular Melanoma. He had a normal looking mole removed from his lower back just right of his spine in 2010. The next day we got a phone call to go straight back and were given his diagnosis. He had wide incision surgery to remove it + 9 lymph nodes. We then learned it had reached his lymph nodes. He underwent 20 days of intensive interferon Alpha chemo then was to continue with injections daily for 12 months. He only managed one month before becoming clinically anorexic and had to discontinue. We were told it could reappear and if it did was likely to hit several major organs BUT He is now 7years 3months cancer free and 30. Yes you can survive this but you need to be diligent with follow ups. Only this week he has an enlarged lymph node under his arm and had a fine needle aspiration and are holding our breath for the results this Thursday. We are confident it will be nothing BUT we are happy for everyone to cross their fingers for him. Good luck xx

                                                                                                                                                                                                                                  Edwin
                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                    Several years ago my aunt Ruth had stage 4 melanoma.   Immunotherapy was not yet known.  Chemotherapy did not save her.  A March 2016 PET scan showed melanoma in many of my bones.   In April 2016 I began Yervoy/Opdivo combo treatment.   I received my 53rd infusion of Opdivo last week.   My recent PET scan showed no cancer in any bones, just cancer in one lymph node.  Yesterday I finished radiation treatment to that lymph node.

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                                                                                                                                                                                                                                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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