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For Those NED Folks, How Do you Know…

Forums General Melanoma Community For Those NED Folks, How Do you Know…

  • Post
    kpcollins31
    Participant

      Let me start by saying that I am stage 3c, 39 years old, and undergoing no treatment currently. I had surgery in Sep 2012 to remove a single infected lymph node in my upper left arm… they took a few sentinal nodes as well and they were all clear. I am seeing a melanoma specialist (Dr. John Stewart at Wake Forest Baptist Health) who does not really believe in scans, but he did plan to do another PET scan at the 1 year mark.

      Let me start by saying that I am stage 3c, 39 years old, and undergoing no treatment currently. I had surgery in Sep 2012 to remove a single infected lymph node in my upper left arm… they took a few sentinal nodes as well and they were all clear. I am seeing a melanoma specialist (Dr. John Stewart at Wake Forest Baptist Health) who does not really believe in scans, but he did plan to do another PET scan at the 1 year mark.

      So my question is, how do you know if you have a problem? I feel great – I have started eating better and lost some weight. I hit the gym hard several times a week and feel stronger than I have in years. Does some physical symptom typically manifest itself if you become stage 4?  How many people cruise along thinking everything is great and then have some kind of routine scan to find out otherwise?   

    Viewing 53 reply threads
    • Replies
        WayneG
        Participant

          Unfortunately, you can have issues and have no external signs.  A year ago, had just completed my annual physical and everything was great.  Nothing in my lab work or the way I felt would have let me know that I was stage IV with at least 9 areas of melanoma – lungs, liver, bone, etc.  It was only by a miracle that a routine scan to check for artery plaque showed a "shadow" on my left lung that led to the diagnosis.  This was 13 years after an original bout with melanoma behind my right ear and no lymph node involvement.  I am coming up on my 1 year anniversay taking Zelboraf and have been NED since last summer.

          Hope this helps.

          WayneG
          Participant

            Unfortunately, you can have issues and have no external signs.  A year ago, had just completed my annual physical and everything was great.  Nothing in my lab work or the way I felt would have let me know that I was stage IV with at least 9 areas of melanoma – lungs, liver, bone, etc.  It was only by a miracle that a routine scan to check for artery plaque showed a "shadow" on my left lung that led to the diagnosis.  This was 13 years after an original bout with melanoma behind my right ear and no lymph node involvement.  I am coming up on my 1 year anniversay taking Zelboraf and have been NED since last summer.

            Hope this helps.

            WayneG
            Participant

              Unfortunately, you can have issues and have no external signs.  A year ago, had just completed my annual physical and everything was great.  Nothing in my lab work or the way I felt would have let me know that I was stage IV with at least 9 areas of melanoma – lungs, liver, bone, etc.  It was only by a miracle that a routine scan to check for artery plaque showed a "shadow" on my left lung that led to the diagnosis.  This was 13 years after an original bout with melanoma behind my right ear and no lymph node involvement.  I am coming up on my 1 year anniversay taking Zelboraf and have been NED since last summer.

              Hope this helps.

              dellriol
              Participant

                I was a stage I for 6 years, and felt great until one day my hand started developing a tremor.  Within 2 days I had lost the use of the right side of my body due to a tumor that hemorrhaged in my brain. tumor was removed and now I have very few problems from that.  PET scan and CAT scans found a few small lung tumors that didn't even show up on chest x-ray taken at the hospital 5 days before the CAT.  So in my experience it just showed back up with no warning.  Important to keep up all followup care.

                dellriol
                Participant

                  I was a stage I for 6 years, and felt great until one day my hand started developing a tremor.  Within 2 days I had lost the use of the right side of my body due to a tumor that hemorrhaged in my brain. tumor was removed and now I have very few problems from that.  PET scan and CAT scans found a few small lung tumors that didn't even show up on chest x-ray taken at the hospital 5 days before the CAT.  So in my experience it just showed back up with no warning.  Important to keep up all followup care.

                  dellriol
                  Participant

                    I was a stage I for 6 years, and felt great until one day my hand started developing a tremor.  Within 2 days I had lost the use of the right side of my body due to a tumor that hemorrhaged in my brain. tumor was removed and now I have very few problems from that.  PET scan and CAT scans found a few small lung tumors that didn't even show up on chest x-ray taken at the hospital 5 days before the CAT.  So in my experience it just showed back up with no warning.  Important to keep up all followup care.

                    Phil S
                    Participant
                      I can only tell you our experience, my husband was Stage 3 and had completed his one year of interferon two months earlier. He was feeling GREAT when he went in for routine scans in July 2011. He had been playing basketball with our son and we were all vacationing on Cape Cod. We thought all would be good when we traveled to Boston for those scans, yet they revealed one lung tumor which was over 1 cm. So, with no symptoms whatsoever, Phil became Stage 4 and needed lung surgery. Not a great way to end our vacation. I think it’s crazy that a doctor doesn’t believe in scans, especially since melanoma is the most unpredictiveable of cancers. Just my two cents. My husband has been Stage 4 for 20 months now, and has no symptoms at all right now, even though he has several small tumors, in lungs and abdomen cavity. Please advocate for yourself, wishing you all best, Valerie ( Phil’s wife)
                      Phil S
                      Participant
                        I can only tell you our experience, my husband was Stage 3 and had completed his one year of interferon two months earlier. He was feeling GREAT when he went in for routine scans in July 2011. He had been playing basketball with our son and we were all vacationing on Cape Cod. We thought all would be good when we traveled to Boston for those scans, yet they revealed one lung tumor which was over 1 cm. So, with no symptoms whatsoever, Phil became Stage 4 and needed lung surgery. Not a great way to end our vacation. I think it’s crazy that a doctor doesn’t believe in scans, especially since melanoma is the most unpredictiveable of cancers. Just my two cents. My husband has been Stage 4 for 20 months now, and has no symptoms at all right now, even though he has several small tumors, in lungs and abdomen cavity. Please advocate for yourself, wishing you all best, Valerie ( Phil’s wife)
                        Phil S
                        Participant
                          I can only tell you our experience, my husband was Stage 3 and had completed his one year of interferon two months earlier. He was feeling GREAT when he went in for routine scans in July 2011. He had been playing basketball with our son and we were all vacationing on Cape Cod. We thought all would be good when we traveled to Boston for those scans, yet they revealed one lung tumor which was over 1 cm. So, with no symptoms whatsoever, Phil became Stage 4 and needed lung surgery. Not a great way to end our vacation. I think it’s crazy that a doctor doesn’t believe in scans, especially since melanoma is the most unpredictiveable of cancers. Just my two cents. My husband has been Stage 4 for 20 months now, and has no symptoms at all right now, even though he has several small tumors, in lungs and abdomen cavity. Please advocate for yourself, wishing you all best, Valerie ( Phil’s wife)
                          PeterO
                          Participant

                            After I completed interferon for stage III melanoma, I opted to minimize all care including scans and even though I soon moved up to stage IV (subq mets) experienced almost four years of blissful good health. That came to a crashing end last summer with a brain tumor that "came out of nowhere." Of course, a brain MRI probably would have detected it before it bleed, but there's no guarantee of that. Here's the blog post in which I contemplate the choice I made to live life and to let the chips fall where they might: http://www.theogler.blogspot.com/2012/08/the-haunting-question.html. I believe not having quarterly scans per my doctor's recommendation was still the right decision.

                            PeterO
                            Participant

                              After I completed interferon for stage III melanoma, I opted to minimize all care including scans and even though I soon moved up to stage IV (subq mets) experienced almost four years of blissful good health. That came to a crashing end last summer with a brain tumor that "came out of nowhere." Of course, a brain MRI probably would have detected it before it bleed, but there's no guarantee of that. Here's the blog post in which I contemplate the choice I made to live life and to let the chips fall where they might: http://www.theogler.blogspot.com/2012/08/the-haunting-question.html. I believe not having quarterly scans per my doctor's recommendation was still the right decision.

                              PeterO
                              Participant

                                After I completed interferon for stage III melanoma, I opted to minimize all care including scans and even though I soon moved up to stage IV (subq mets) experienced almost four years of blissful good health. That came to a crashing end last summer with a brain tumor that "came out of nowhere." Of course, a brain MRI probably would have detected it before it bleed, but there's no guarantee of that. Here's the blog post in which I contemplate the choice I made to live life and to let the chips fall where they might: http://www.theogler.blogspot.com/2012/08/the-haunting-question.html. I believe not having quarterly scans per my doctor's recommendation was still the right decision.

                                Gene_S
                                Participant

                                  Hello,

                                  In reference to your question, my husband (who was stage IIIC) was feeling fine and went back to the surgeon for one last check up at the 6 month time.  He found a lesion in the scar area of the surgery that was done about 1 year before and it was pressing on the spine at the cervical area in the neck and was deemed inoperable.  Imagine our shock when we thought we were in the clear and going to be able to live life for awhile and he had been feeling just like his old self doing everything he enjoyed.  He was sent for scans and found they were also in the liver and lungs so now he would be Stage IV.  That was 2  1/2 years ago and he has been on Ipi (Yervoy) for 2 years now and is NED (no evidence of disease).

                                  His lymph nodes were always deemed clear so it traveled through his blood.  The liver lesion was detectable on the scans but in 6 weeks time was a little over 3 x 3.  It made him not able to get in the clinical trial for Oncovex.  By March when he started the Ipi Clinical Trial it was 5 x 6.

                                  So I would be hesitant about not having anything done since you are alread Stage IIIC.  This beast rears its ugly head at the anytime.

                                  Judy (loving wife of Gene)

                                  Gene_S
                                  Participant

                                    Hello,

                                    In reference to your question, my husband (who was stage IIIC) was feeling fine and went back to the surgeon for one last check up at the 6 month time.  He found a lesion in the scar area of the surgery that was done about 1 year before and it was pressing on the spine at the cervical area in the neck and was deemed inoperable.  Imagine our shock when we thought we were in the clear and going to be able to live life for awhile and he had been feeling just like his old self doing everything he enjoyed.  He was sent for scans and found they were also in the liver and lungs so now he would be Stage IV.  That was 2  1/2 years ago and he has been on Ipi (Yervoy) for 2 years now and is NED (no evidence of disease).

                                    His lymph nodes were always deemed clear so it traveled through his blood.  The liver lesion was detectable on the scans but in 6 weeks time was a little over 3 x 3.  It made him not able to get in the clinical trial for Oncovex.  By March when he started the Ipi Clinical Trial it was 5 x 6.

                                    So I would be hesitant about not having anything done since you are alread Stage IIIC.  This beast rears its ugly head at the anytime.

                                    Judy (loving wife of Gene)

                                    Gene_S
                                    Participant

                                      Hello,

                                      In reference to your question, my husband (who was stage IIIC) was feeling fine and went back to the surgeon for one last check up at the 6 month time.  He found a lesion in the scar area of the surgery that was done about 1 year before and it was pressing on the spine at the cervical area in the neck and was deemed inoperable.  Imagine our shock when we thought we were in the clear and going to be able to live life for awhile and he had been feeling just like his old self doing everything he enjoyed.  He was sent for scans and found they were also in the liver and lungs so now he would be Stage IV.  That was 2  1/2 years ago and he has been on Ipi (Yervoy) for 2 years now and is NED (no evidence of disease).

                                      His lymph nodes were always deemed clear so it traveled through his blood.  The liver lesion was detectable on the scans but in 6 weeks time was a little over 3 x 3.  It made him not able to get in the clinical trial for Oncovex.  By March when he started the Ipi Clinical Trial it was 5 x 6.

                                      So I would be hesitant about not having anything done since you are alread Stage IIIC.  This beast rears its ugly head at the anytime.

                                      Judy (loving wife of Gene)

                                      akkcak
                                      Participant
                                        My doctors are the same. No scans unless there is evidence. I told my local onc about feeling cruddy, headaches, weight loss etc. on 2 occasions and he would just say, that’s interferon. Whenl i saw my surgical onc they sent me for scans. Low and behold there’s a spot in my brain. I made it a year from original diagnosis. I knew something was off but kept being told it was the medicine. Don’t be scared to fight for your health.

                                        Amy

                                        akkcak
                                        Participant
                                          My doctors are the same. No scans unless there is evidence. I told my local onc about feeling cruddy, headaches, weight loss etc. on 2 occasions and he would just say, that’s interferon. Whenl i saw my surgical onc they sent me for scans. Low and behold there’s a spot in my brain. I made it a year from original diagnosis. I knew something was off but kept being told it was the medicine. Don’t be scared to fight for your health.

                                          Amy

                                          akkcak
                                          Participant
                                            My doctors are the same. No scans unless there is evidence. I told my local onc about feeling cruddy, headaches, weight loss etc. on 2 occasions and he would just say, that’s interferon. Whenl i saw my surgical onc they sent me for scans. Low and behold there’s a spot in my brain. I made it a year from original diagnosis. I knew something was off but kept being told it was the medicine. Don’t be scared to fight for your health.

                                            Amy

                                            POW
                                            Participant

                                              A melanoma specialist who says he "doesn't believe in scans" is like a cardiologist who doesn't believe in stethoscopes! That is absurd! Get yourself a REAL melanoma specialist. 

                                              Your profile here is very complete and very helpful. Thank you for writing it. However, you do not mention if you have had the BRAF test. Knowing if you have the BRAF mutation will be crucial for determining your future course of treatment. If not, you might check with the pathologist to find out if any tissue is left for doing the test. It's really important. 

                                              Based on your profile, your melanoma has already spread. Right now, it's still confined to the original organ system (i.e., the skin and its associated lymph nodes). But it has spread. Your doctor is correct in that until recently, the only thing they could give Stage III patients was interferon which is very rough and seldom works. But now they are just starting a clinical trial using BRAF+MEK inhibitors in Stage III patients ( see http://www.gsk.com/media/press-releases/2013/glaxosmithkline-starts-phase-iii-study-to-test-combined-braf-mek.html ) If you have the BRAF mutation, that is something you should consider. 

                                              Peter "The Ogler" preferred to live his life without worrying about cancer. I know that some people adopt that attitude and most of them probably never encounter melanoma again. But as the father of 3 young children, I think you need to be more responsible than that. Metastizing melanoma has no symptoms until it's too late– like Peter's stroke that came from out of the blue. Or my brother's, for that matter. 

                                              I strongly suggest that you take melanoma seriously. Get yourself to a Melanoma Center of Excellence as soon as possible. Follow their advice. Get the BRAF test. Look into clinical trials for Stage III. And get body scans AND brain scans (preferacly CT andMRI rather than PET) at least every 6 months for the next several years. Most people with Stage III do not progress to Stage IV. But if you do, the sooner you know it the better chances of a successful treatment. Once it gets into the brain (melanoma's favorite place to go other than the lungs) things can become difficult because many treatments do not work in the brain and most clinical trials are closed to people with brain mets. 

                                              POW
                                              Participant

                                                A melanoma specialist who says he "doesn't believe in scans" is like a cardiologist who doesn't believe in stethoscopes! That is absurd! Get yourself a REAL melanoma specialist. 

                                                Your profile here is very complete and very helpful. Thank you for writing it. However, you do not mention if you have had the BRAF test. Knowing if you have the BRAF mutation will be crucial for determining your future course of treatment. If not, you might check with the pathologist to find out if any tissue is left for doing the test. It's really important. 

                                                Based on your profile, your melanoma has already spread. Right now, it's still confined to the original organ system (i.e., the skin and its associated lymph nodes). But it has spread. Your doctor is correct in that until recently, the only thing they could give Stage III patients was interferon which is very rough and seldom works. But now they are just starting a clinical trial using BRAF+MEK inhibitors in Stage III patients ( see http://www.gsk.com/media/press-releases/2013/glaxosmithkline-starts-phase-iii-study-to-test-combined-braf-mek.html ) If you have the BRAF mutation, that is something you should consider. 

                                                Peter "The Ogler" preferred to live his life without worrying about cancer. I know that some people adopt that attitude and most of them probably never encounter melanoma again. But as the father of 3 young children, I think you need to be more responsible than that. Metastizing melanoma has no symptoms until it's too late– like Peter's stroke that came from out of the blue. Or my brother's, for that matter. 

                                                I strongly suggest that you take melanoma seriously. Get yourself to a Melanoma Center of Excellence as soon as possible. Follow their advice. Get the BRAF test. Look into clinical trials for Stage III. And get body scans AND brain scans (preferacly CT andMRI rather than PET) at least every 6 months for the next several years. Most people with Stage III do not progress to Stage IV. But if you do, the sooner you know it the better chances of a successful treatment. Once it gets into the brain (melanoma's favorite place to go other than the lungs) things can become difficult because many treatments do not work in the brain and most clinical trials are closed to people with brain mets. 

                                                  Janner
                                                  Participant

                                                    I haven't read all the replies, but POW, there are definitely melanoma centers who do not do scans without symptoms.  In studies, scans have not proven to increase survival.  It's not just some piddly institutions who don't scan, there are more than a few.  Like it or not, it is an accepted practice.  I can't name names at the moment, but it's not an isolated incidence.   Just a FYI. 

                                                    Janner
                                                    Participant

                                                      I haven't read all the replies, but POW, there are definitely melanoma centers who do not do scans without symptoms.  In studies, scans have not proven to increase survival.  It's not just some piddly institutions who don't scan, there are more than a few.  Like it or not, it is an accepted practice.  I can't name names at the moment, but it's not an isolated incidence.   Just a FYI. 

                                                      POW
                                                      Participant

                                                        Maybe– just maybe– not doing scans for Stage IIIc made sense when there were no effective treatments for Stage IV. What is the point of the expense and the radiation exposure and the "scanxiety" if there is nothing you can do stop the spread, anyway?

                                                        The problem is that many oncologists still seem to have that attitude. I know that the senior radiation oncologist who treated my brother had that attitude. He essentially said, "Stage IV melanoma? Forget it. You're a goner." But things have changed in the field of melanoma in the last 5 years. If a scan reveals a single met in the lung or liver SSR or surgery might be approppriate. BRAF, MEK, ipi, anti-PD1, and other treatments are now possible for Stage IV. So the sooner you find any metastases, the better.  

                                                        So I stick to my position that any facility or any oncologist that tells a patient that they don't do scans on Stage IIIc patients is not keeping up with the developments in the field and should be dumped. I don't care how prominant or well-regarded they are. Certainly, "watch and wait" is a valid option. But it should only be an option, not a requirement. 

                                                        POW
                                                        Participant

                                                          Maybe– just maybe– not doing scans for Stage IIIc made sense when there were no effective treatments for Stage IV. What is the point of the expense and the radiation exposure and the "scanxiety" if there is nothing you can do stop the spread, anyway?

                                                          The problem is that many oncologists still seem to have that attitude. I know that the senior radiation oncologist who treated my brother had that attitude. He essentially said, "Stage IV melanoma? Forget it. You're a goner." But things have changed in the field of melanoma in the last 5 years. If a scan reveals a single met in the lung or liver SSR or surgery might be approppriate. BRAF, MEK, ipi, anti-PD1, and other treatments are now possible for Stage IV. So the sooner you find any metastases, the better.  

                                                          So I stick to my position that any facility or any oncologist that tells a patient that they don't do scans on Stage IIIc patients is not keeping up with the developments in the field and should be dumped. I don't care how prominant or well-regarded they are. Certainly, "watch and wait" is a valid option. But it should only be an option, not a requirement. 

                                                          Janner
                                                          Participant

                                                            I'm just playing devil's advocate here.  I'm not pro or con when it comes to scans as I feel that is something that needs to worked out individually between patient and medical provider. 

                                                            You mention new treatments.  Yes, we have the BRAF tx and Yervoy.  BUT…. while some people do have durable responses to new treatments, mostly the life expectancy is increased by less than six months if you take these drugs.  If you are a responder with minimal disease, it is likely you'd be a responder with more widespread disease.  I know the arguments both ways from a general and personal point of view (caregiver for my stage IV father), but until there is a treatment that increases life expectancy in a large population by a significant amount, I don't see the scan issue changing.  Scans are big business and big money makers, and some medical centers refuse to buy in to their supposed benefit.  Now if we had a treatment that increased durable response in 50% of the population and it was determined that "earlier is better", the argument would be different.  Yes, there are some uninformed doctors who say "stage IV, you're a goner".  But that doesn't mean there aren't some very well informed doctors who feel that scans do not improve outcome. 

                                                            Everyone should do what makes them comfortable with their treatment schedule.  If you don't like the 'no scan' mentality, then finding another doctor or institution is the way to go.  But I don't think you should dismiss INFORMED expert opinions (who know both the new treatments and the scan issue) as erroneous because they differ from your opinion.

                                                            Just my 2 cents. 

                                                            Janner
                                                            Participant

                                                              I'm just playing devil's advocate here.  I'm not pro or con when it comes to scans as I feel that is something that needs to worked out individually between patient and medical provider. 

                                                              You mention new treatments.  Yes, we have the BRAF tx and Yervoy.  BUT…. while some people do have durable responses to new treatments, mostly the life expectancy is increased by less than six months if you take these drugs.  If you are a responder with minimal disease, it is likely you'd be a responder with more widespread disease.  I know the arguments both ways from a general and personal point of view (caregiver for my stage IV father), but until there is a treatment that increases life expectancy in a large population by a significant amount, I don't see the scan issue changing.  Scans are big business and big money makers, and some medical centers refuse to buy in to their supposed benefit.  Now if we had a treatment that increased durable response in 50% of the population and it was determined that "earlier is better", the argument would be different.  Yes, there are some uninformed doctors who say "stage IV, you're a goner".  But that doesn't mean there aren't some very well informed doctors who feel that scans do not improve outcome. 

                                                              Everyone should do what makes them comfortable with their treatment schedule.  If you don't like the 'no scan' mentality, then finding another doctor or institution is the way to go.  But I don't think you should dismiss INFORMED expert opinions (who know both the new treatments and the scan issue) as erroneous because they differ from your opinion.

                                                              Just my 2 cents. 

                                                              Janner
                                                              Participant

                                                                I'm just playing devil's advocate here.  I'm not pro or con when it comes to scans as I feel that is something that needs to worked out individually between patient and medical provider. 

                                                                You mention new treatments.  Yes, we have the BRAF tx and Yervoy.  BUT…. while some people do have durable responses to new treatments, mostly the life expectancy is increased by less than six months if you take these drugs.  If you are a responder with minimal disease, it is likely you'd be a responder with more widespread disease.  I know the arguments both ways from a general and personal point of view (caregiver for my stage IV father), but until there is a treatment that increases life expectancy in a large population by a significant amount, I don't see the scan issue changing.  Scans are big business and big money makers, and some medical centers refuse to buy in to their supposed benefit.  Now if we had a treatment that increased durable response in 50% of the population and it was determined that "earlier is better", the argument would be different.  Yes, there are some uninformed doctors who say "stage IV, you're a goner".  But that doesn't mean there aren't some very well informed doctors who feel that scans do not improve outcome. 

                                                                Everyone should do what makes them comfortable with their treatment schedule.  If you don't like the 'no scan' mentality, then finding another doctor or institution is the way to go.  But I don't think you should dismiss INFORMED expert opinions (who know both the new treatments and the scan issue) as erroneous because they differ from your opinion.

                                                                Just my 2 cents. 

                                                                susanr
                                                                Participant

                                                                  Janner,

                                                                  I agree and again you read my mind what I was going to say next.  I hate to sound negative…..The new treatments we have are great but not a cure when you read the literature from the makers of these drugs.  I am happy some do well and are NED for some years…but unfortunately…I still think we are behing the 8 ball with melanoma.  Sorry for my opinion about this beast.

                                                                  Susan

                                                                  susanr
                                                                  Participant

                                                                    Janner,

                                                                    I agree and again you read my mind what I was going to say next.  I hate to sound negative…..The new treatments we have are great but not a cure when you read the literature from the makers of these drugs.  I am happy some do well and are NED for some years…but unfortunately…I still think we are behing the 8 ball with melanoma.  Sorry for my opinion about this beast.

                                                                    Susan

                                                                    susanr
                                                                    Participant

                                                                      Janner,

                                                                      I agree and again you read my mind what I was going to say next.  I hate to sound negative…..The new treatments we have are great but not a cure when you read the literature from the makers of these drugs.  I am happy some do well and are NED for some years…but unfortunately…I still think we are behing the 8 ball with melanoma.  Sorry for my opinion about this beast.

                                                                      Susan

                                                                      POW
                                                                      Participant

                                                                        Janner and Susan, I think this is a delightful and very helpful airing of different facts, different opinions, and different perspectives. The poor OP (kpcollins31) is probably more confused than ever. But hey, welcome to the world of melanoma!

                                                                        POW
                                                                        Participant

                                                                          Janner and Susan, I think this is a delightful and very helpful airing of different facts, different opinions, and different perspectives. The poor OP (kpcollins31) is probably more confused than ever. But hey, welcome to the world of melanoma!

                                                                          POW
                                                                          Participant

                                                                            Janner and Susan, I think this is a delightful and very helpful airing of different facts, different opinions, and different perspectives. The poor OP (kpcollins31) is probably more confused than ever. But hey, welcome to the world of melanoma!

                                                                            susanr
                                                                            Participant

                                                                              POW….Thats what this forum is for.  If it brings kpcollins31…a new perspective about this disease and to be more aggressive about melanoma….. then this post was a success.  I am glad we all made these different opinions, different facts, and different perspectives.  I agree with your original post..it tells us all to educate and be our own advocate for survival.    I know that when I was fighting for my brother, the posts from all members…esp. when they were different opinions about melanoma helped me tremendously.  I became more educated.

                                                                              susanr
                                                                              Participant

                                                                                POW….Thats what this forum is for.  If it brings kpcollins31…a new perspective about this disease and to be more aggressive about melanoma….. then this post was a success.  I am glad we all made these different opinions, different facts, and different perspectives.  I agree with your original post..it tells us all to educate and be our own advocate for survival.    I know that when I was fighting for my brother, the posts from all members…esp. when they were different opinions about melanoma helped me tremendously.  I became more educated.

                                                                                susanr
                                                                                Participant

                                                                                  POW….Thats what this forum is for.  If it brings kpcollins31…a new perspective about this disease and to be more aggressive about melanoma….. then this post was a success.  I am glad we all made these different opinions, different facts, and different perspectives.  I agree with your original post..it tells us all to educate and be our own advocate for survival.    I know that when I was fighting for my brother, the posts from all members…esp. when they were different opinions about melanoma helped me tremendously.  I became more educated.

                                                                                  POW
                                                                                  Participant

                                                                                    Maybe– just maybe– not doing scans for Stage IIIc made sense when there were no effective treatments for Stage IV. What is the point of the expense and the radiation exposure and the "scanxiety" if there is nothing you can do stop the spread, anyway?

                                                                                    The problem is that many oncologists still seem to have that attitude. I know that the senior radiation oncologist who treated my brother had that attitude. He essentially said, "Stage IV melanoma? Forget it. You're a goner." But things have changed in the field of melanoma in the last 5 years. If a scan reveals a single met in the lung or liver SSR or surgery might be approppriate. BRAF, MEK, ipi, anti-PD1, and other treatments are now possible for Stage IV. So the sooner you find any metastases, the better.  

                                                                                    So I stick to my position that any facility or any oncologist that tells a patient that they don't do scans on Stage IIIc patients is not keeping up with the developments in the field and should be dumped. I don't care how prominant or well-regarded they are. Certainly, "watch and wait" is a valid option. But it should only be an option, not a requirement. 

                                                                                    susanr
                                                                                    Participant

                                                                                      Janner,

                                                                                      I 'Ditto" your response.  I was going to post the same in my reply.  Back in Sept. 2012, my brother was feeling and improving…we thought on chemo…Carbo/Nexavar.  He was due for scans at that time but his Onc did not want to scan him because he was improved…symptomatically….his appetite was better, more energy, etc.  She was very reluctant about scanning him.  We were for it…she was against it.  Looking back, I do see the research how it does not affect survival.  My brother passed 3 mths later…12/6/2012.  I am glad he was not scanned.  I kind of feel better not knowing what was going on inside…If that makes sense to you all.  Just as an FYI…he was followed by Dr. Pavlik at NYU.  There are many "big" melanoma institutions that do follow this pattern. 

                                                                                      susanr
                                                                                      Participant

                                                                                        Janner,

                                                                                        I 'Ditto" your response.  I was going to post the same in my reply.  Back in Sept. 2012, my brother was feeling and improving…we thought on chemo…Carbo/Nexavar.  He was due for scans at that time but his Onc did not want to scan him because he was improved…symptomatically….his appetite was better, more energy, etc.  She was very reluctant about scanning him.  We were for it…she was against it.  Looking back, I do see the research how it does not affect survival.  My brother passed 3 mths later…12/6/2012.  I am glad he was not scanned.  I kind of feel better not knowing what was going on inside…If that makes sense to you all.  Just as an FYI…he was followed by Dr. Pavlik at NYU.  There are many "big" melanoma institutions that do follow this pattern. 

                                                                                        susanr
                                                                                        Participant

                                                                                          Janner,

                                                                                          I 'Ditto" your response.  I was going to post the same in my reply.  Back in Sept. 2012, my brother was feeling and improving…we thought on chemo…Carbo/Nexavar.  He was due for scans at that time but his Onc did not want to scan him because he was improved…symptomatically….his appetite was better, more energy, etc.  She was very reluctant about scanning him.  We were for it…she was against it.  Looking back, I do see the research how it does not affect survival.  My brother passed 3 mths later…12/6/2012.  I am glad he was not scanned.  I kind of feel better not knowing what was going on inside…If that makes sense to you all.  Just as an FYI…he was followed by Dr. Pavlik at NYU.  There are many "big" melanoma institutions that do follow this pattern. 

                                                                                          dodgedh2
                                                                                          Participant

                                                                                            Studies, studies, studies…..Melanoma can, and very often does present itself with NO symptoms. I for one know from experience. I  had absolutly NO symptoms, when , during a routine scan for other issues, a tumor was found which turned out to be Stage 4 Mel with unknown primary. After going to my surgical onc for biopsy (confirmation) and removal and then to my melanoma specialist, he explained that melanoma can and often does develop and the patient has no symptoms. If I had not had the routine scan, the melanoma (located in my sacrum near the nerve roots) would have involved my spine shortly before my death. I would not have had any symptoms until spinal involvement. I would RUN from any mel specialist that did not conduct scans.

                                                                                            dodgedh2
                                                                                            Participant

                                                                                              Studies, studies, studies…..Melanoma can, and very often does present itself with NO symptoms. I for one know from experience. I  had absolutly NO symptoms, when , during a routine scan for other issues, a tumor was found which turned out to be Stage 4 Mel with unknown primary. After going to my surgical onc for biopsy (confirmation) and removal and then to my melanoma specialist, he explained that melanoma can and often does develop and the patient has no symptoms. If I had not had the routine scan, the melanoma (located in my sacrum near the nerve roots) would have involved my spine shortly before my death. I would not have had any symptoms until spinal involvement. I would RUN from any mel specialist that did not conduct scans.

                                                                                              dodgedh2
                                                                                              Participant

                                                                                                Studies, studies, studies…..Melanoma can, and very often does present itself with NO symptoms. I for one know from experience. I  had absolutly NO symptoms, when , during a routine scan for other issues, a tumor was found which turned out to be Stage 4 Mel with unknown primary. After going to my surgical onc for biopsy (confirmation) and removal and then to my melanoma specialist, he explained that melanoma can and often does develop and the patient has no symptoms. If I had not had the routine scan, the melanoma (located in my sacrum near the nerve roots) would have involved my spine shortly before my death. I would not have had any symptoms until spinal involvement. I would RUN from any mel specialist that did not conduct scans.

                                                                                                Janner
                                                                                                Participant

                                                                                                  I haven't read all the replies, but POW, there are definitely melanoma centers who do not do scans without symptoms.  In studies, scans have not proven to increase survival.  It's not just some piddly institutions who don't scan, there are more than a few.  Like it or not, it is an accepted practice.  I can't name names at the moment, but it's not an isolated incidence.   Just a FYI. 

                                                                                                POW
                                                                                                Participant

                                                                                                  A melanoma specialist who says he "doesn't believe in scans" is like a cardiologist who doesn't believe in stethoscopes! That is absurd! Get yourself a REAL melanoma specialist. 

                                                                                                  Your profile here is very complete and very helpful. Thank you for writing it. However, you do not mention if you have had the BRAF test. Knowing if you have the BRAF mutation will be crucial for determining your future course of treatment. If not, you might check with the pathologist to find out if any tissue is left for doing the test. It's really important. 

                                                                                                  Based on your profile, your melanoma has already spread. Right now, it's still confined to the original organ system (i.e., the skin and its associated lymph nodes). But it has spread. Your doctor is correct in that until recently, the only thing they could give Stage III patients was interferon which is very rough and seldom works. But now they are just starting a clinical trial using BRAF+MEK inhibitors in Stage III patients ( see http://www.gsk.com/media/press-releases/2013/glaxosmithkline-starts-phase-iii-study-to-test-combined-braf-mek.html ) If you have the BRAF mutation, that is something you should consider. 

                                                                                                  Peter "The Ogler" preferred to live his life without worrying about cancer. I know that some people adopt that attitude and most of them probably never encounter melanoma again. But as the father of 3 young children, I think you need to be more responsible than that. Metastizing melanoma has no symptoms until it's too late– like Peter's stroke that came from out of the blue. Or my brother's, for that matter. 

                                                                                                  I strongly suggest that you take melanoma seriously. Get yourself to a Melanoma Center of Excellence as soon as possible. Follow their advice. Get the BRAF test. Look into clinical trials for Stage III. And get body scans AND brain scans (preferacly CT andMRI rather than PET) at least every 6 months for the next several years. Most people with Stage III do not progress to Stage IV. But if you do, the sooner you know it the better chances of a successful treatment. Once it gets into the brain (melanoma's favorite place to go other than the lungs) things can become difficult because many treatments do not work in the brain and most clinical trials are closed to people with brain mets. 

                                                                                                  susanr
                                                                                                  Participant

                                                                                                    My opinion to your post is as follows.  Melanoma is an aggressive and smart cancer.  You are stage IIIc…remember the lower the stage the better.  I would not be taking the " this is basal cell carcinoma" attitude either by you or your doctor.  Stage IIIc is a stage you need to be in front of the 8 ball…not behind it.  My brother was stage IIIb at time of diagnosis.  He lost his fight after 3 yrs of this battle on 12/6/2012. Stage III patients can go stage IV…it is very common…and can happen within a  year, few years or even like my friend at her 10 year mark.  There are Stage 1 patients that have gone stage IV.  I am not trying to scare but  you need to be a fighter for yourself.  You need to research and be on top of this cancer.   There are many patients who feel great and then go for that scan and there are mets everywhere.  Again, I know from personal experience.  My brother had a clear scan in 12/2011..felt good….then 2/2012 his PET scan "lite up like a Christmas Tree"…..Abdomen, lungs, bone mets.  Take care of yourself…..maybe try different opinions from other MEl. specialist.

                                                                                                    Susan

                                                                                                    susanr
                                                                                                    Participant

                                                                                                      My opinion to your post is as follows.  Melanoma is an aggressive and smart cancer.  You are stage IIIc…remember the lower the stage the better.  I would not be taking the " this is basal cell carcinoma" attitude either by you or your doctor.  Stage IIIc is a stage you need to be in front of the 8 ball…not behind it.  My brother was stage IIIb at time of diagnosis.  He lost his fight after 3 yrs of this battle on 12/6/2012. Stage III patients can go stage IV…it is very common…and can happen within a  year, few years or even like my friend at her 10 year mark.  There are Stage 1 patients that have gone stage IV.  I am not trying to scare but  you need to be a fighter for yourself.  You need to research and be on top of this cancer.   There are many patients who feel great and then go for that scan and there are mets everywhere.  Again, I know from personal experience.  My brother had a clear scan in 12/2011..felt good….then 2/2012 his PET scan "lite up like a Christmas Tree"…..Abdomen, lungs, bone mets.  Take care of yourself…..maybe try different opinions from other MEl. specialist.

                                                                                                      Susan

                                                                                                      susanr
                                                                                                      Participant

                                                                                                        My opinion to your post is as follows.  Melanoma is an aggressive and smart cancer.  You are stage IIIc…remember the lower the stage the better.  I would not be taking the " this is basal cell carcinoma" attitude either by you or your doctor.  Stage IIIc is a stage you need to be in front of the 8 ball…not behind it.  My brother was stage IIIb at time of diagnosis.  He lost his fight after 3 yrs of this battle on 12/6/2012. Stage III patients can go stage IV…it is very common…and can happen within a  year, few years or even like my friend at her 10 year mark.  There are Stage 1 patients that have gone stage IV.  I am not trying to scare but  you need to be a fighter for yourself.  You need to research and be on top of this cancer.   There are many patients who feel great and then go for that scan and there are mets everywhere.  Again, I know from personal experience.  My brother had a clear scan in 12/2011..felt good….then 2/2012 his PET scan "lite up like a Christmas Tree"…..Abdomen, lungs, bone mets.  Take care of yourself…..maybe try different opinions from other MEl. specialist.

                                                                                                        Susan

                                                                                                        randallgford
                                                                                                        Participant

                                                                                                          Maybe because its is 5:00 a.m. and I am awake as usual; this thread is very tough. Someone mentioned

                                                                                                          that even "responders" to ipi and Zelboraf usually only gain 3-6 months. I guess I was kidding myself that

                                                                                                          some people get a long-term response. (There are some longer term NED people on here??) My husb's

                                                                                                          mets are lung liver abdomen ( numberous )Really  only a few months even if he responds??. I thought the question

                                                                                                          was IF he responds. Brain is iffy, he is getting a Novartis MRI (if ins pays) after contrast mri showed 2 small spots. I am trying to keep my daughter away at college from getting too stressed – told her its "treatable" is that wrong? How do you keep a positive attitude? I was doing OK but right about now I just don't know.

                                                                                                          His loving wife of 25 years, Vicki

                                                                                                          randallgford
                                                                                                          Participant

                                                                                                            Maybe because its is 5:00 a.m. and I am awake as usual; this thread is very tough. Someone mentioned

                                                                                                            that even "responders" to ipi and Zelboraf usually only gain 3-6 months. I guess I was kidding myself that

                                                                                                            some people get a long-term response. (There are some longer term NED people on here??) My husb's

                                                                                                            mets are lung liver abdomen ( numberous )Really  only a few months even if he responds??. I thought the question

                                                                                                            was IF he responds. Brain is iffy, he is getting a Novartis MRI (if ins pays) after contrast mri showed 2 small spots. I am trying to keep my daughter away at college from getting too stressed – told her its "treatable" is that wrong? How do you keep a positive attitude? I was doing OK but right about now I just don't know.

                                                                                                            His loving wife of 25 years, Vicki

                                                                                                            randallgford
                                                                                                            Participant

                                                                                                              Maybe because its is 5:00 a.m. and I am awake as usual; this thread is very tough. Someone mentioned

                                                                                                              that even "responders" to ipi and Zelboraf usually only gain 3-6 months. I guess I was kidding myself that

                                                                                                              some people get a long-term response. (There are some longer term NED people on here??) My husb's

                                                                                                              mets are lung liver abdomen ( numberous )Really  only a few months even if he responds??. I thought the question

                                                                                                              was IF he responds. Brain is iffy, he is getting a Novartis MRI (if ins pays) after contrast mri showed 2 small spots. I am trying to keep my daughter away at college from getting too stressed – told her its "treatable" is that wrong? How do you keep a positive attitude? I was doing OK but right about now I just don't know.

                                                                                                              His loving wife of 25 years, Vicki

                                                                                                                POW
                                                                                                                Participant

                                                                                                                  No, Vicki, you're not kidding yourself. Some people DO get long responses, sometimes very long responses– many years or even decades. And Brian could well be one of those. As your doctor told you, he's not treating a stastic he's treating Brian. It is perfectly reasonable for you to feel optimistic and to do everything you can in terms of diet, exercise, and fun to keep Brian's body healthy and his immune system strong.

                                                                                                                  Is there ever a time when you can breathe a sigh of relief and say, "Hooray! The melanoma is gone!"? Probably not– at least not for a long time. There is always the worry that the melanoma will progress again. Always the anxiety before each set of scans wondering if this time the scans will  bring you bad news. Living with this uncertainty is one of othe hardest parts of dealing with the disease. My heart breaks for the young people on this forum who ask themselves, "What will the future bring? If we start a family or have another child, will I be around long enough to raise them?" Nobody knows.

                                                                                                                  It has been my observation that the patients who maintain a positive mental attitude, who go into treatment thinking "THIS is the one that's going to work for me!" are the people who fare best along this journey. They live their lives with joy and enthusiasm and trust in God and their doctors to beat the melanoma. So while it is unavoidable to get the shakes sometimes, especially during the "wee small hours" of the night, try to push those thoughts aside. Consciously decide that you are Brain are going to "beat the beast" together and live your lives accordingly. 

                                                                                                                  randallgford
                                                                                                                  Participant

                                                                                                                    Thank you for your kind reply. I have been reading my spiritual strength books and the sun

                                                                                                                    is up and today is treatment day 1 and I am determined to be optimistic. I have a sister

                                                                                                                    who is epileptic so I have a bit of practice with "one day at a time" and honestly I can do

                                                                                                                    that. Ups and downs are part of it I suppose. Anyway up and onward, due in part to people

                                                                                                                    like you and this board.  Vicki

                                                                                                                    randallgford
                                                                                                                    Participant

                                                                                                                      Thank you for your kind reply. I have been reading my spiritual strength books and the sun

                                                                                                                      is up and today is treatment day 1 and I am determined to be optimistic. I have a sister

                                                                                                                      who is epileptic so I have a bit of practice with "one day at a time" and honestly I can do

                                                                                                                      that. Ups and downs are part of it I suppose. Anyway up and onward, due in part to people

                                                                                                                      like you and this board.  Vicki

                                                                                                                      randallgford
                                                                                                                      Participant

                                                                                                                        Thank you for your kind reply. I have been reading my spiritual strength books and the sun

                                                                                                                        is up and today is treatment day 1 and I am determined to be optimistic. I have a sister

                                                                                                                        who is epileptic so I have a bit of practice with "one day at a time" and honestly I can do

                                                                                                                        that. Ups and downs are part of it I suppose. Anyway up and onward, due in part to people

                                                                                                                        like you and this board.  Vicki

                                                                                                                        POW
                                                                                                                        Participant

                                                                                                                          No, Vicki, you're not kidding yourself. Some people DO get long responses, sometimes very long responses– many years or even decades. And Brian could well be one of those. As your doctor told you, he's not treating a stastic he's treating Brian. It is perfectly reasonable for you to feel optimistic and to do everything you can in terms of diet, exercise, and fun to keep Brian's body healthy and his immune system strong.

                                                                                                                          Is there ever a time when you can breathe a sigh of relief and say, "Hooray! The melanoma is gone!"? Probably not– at least not for a long time. There is always the worry that the melanoma will progress again. Always the anxiety before each set of scans wondering if this time the scans will  bring you bad news. Living with this uncertainty is one of othe hardest parts of dealing with the disease. My heart breaks for the young people on this forum who ask themselves, "What will the future bring? If we start a family or have another child, will I be around long enough to raise them?" Nobody knows.

                                                                                                                          It has been my observation that the patients who maintain a positive mental attitude, who go into treatment thinking "THIS is the one that's going to work for me!" are the people who fare best along this journey. They live their lives with joy and enthusiasm and trust in God and their doctors to beat the melanoma. So while it is unavoidable to get the shakes sometimes, especially during the "wee small hours" of the night, try to push those thoughts aside. Consciously decide that you are Brain are going to "beat the beast" together and live your lives accordingly. 

                                                                                                                          POW
                                                                                                                          Participant

                                                                                                                            No, Vicki, you're not kidding yourself. Some people DO get long responses, sometimes very long responses– many years or even decades. And Brian could well be one of those. As your doctor told you, he's not treating a stastic he's treating Brian. It is perfectly reasonable for you to feel optimistic and to do everything you can in terms of diet, exercise, and fun to keep Brian's body healthy and his immune system strong.

                                                                                                                            Is there ever a time when you can breathe a sigh of relief and say, "Hooray! The melanoma is gone!"? Probably not– at least not for a long time. There is always the worry that the melanoma will progress again. Always the anxiety before each set of scans wondering if this time the scans will  bring you bad news. Living with this uncertainty is one of othe hardest parts of dealing with the disease. My heart breaks for the young people on this forum who ask themselves, "What will the future bring? If we start a family or have another child, will I be around long enough to raise them?" Nobody knows.

                                                                                                                            It has been my observation that the patients who maintain a positive mental attitude, who go into treatment thinking "THIS is the one that's going to work for me!" are the people who fare best along this journey. They live their lives with joy and enthusiasm and trust in God and their doctors to beat the melanoma. So while it is unavoidable to get the shakes sometimes, especially during the "wee small hours" of the night, try to push those thoughts aside. Consciously decide that you are Brain are going to "beat the beast" together and live your lives accordingly. 

                                                                                                                            Janner
                                                                                                                            Participant

                                                                                                                              Don't take my post to mean anything abour YOUR husband's prognosis.  I was addressing a totally different topic concerning scans for people who are NED.  There are long term responders with every treatment and there is no reason to think that your husband won't be one of them.  And unlike statistics, you get to try other trials/treatments if you fail one.  If treatment A doesn't work, treatment B might just be the one.  Statistics are just that, numbers.  And wihle they can be used in an abstract sense to make a point, they predict nothing about your husband and how he reacts to his treatments.  Yes, there are many long term survivors on this site! 

                                                                                                                              I do think I would be more honest with my daughter if I were in that position.  This is a serious diagnosis and, as a daughter,  I'd want to be a part of everything going on even if I wasn't there in person.  Staying at school does keep her from the daily grind of the disease,but it sounds as if she doesn't know what is really happening.  I might feel cheated if I were her.  There is no right or wrong with telling or not going into detail with your daughter – much depends on her personality and your family dynamics.  My father is stage IV right now and I am just projecting myself into the situation (trying to imagine being in college again), but I'd want to be informed.  That's just MY personality.

                                                                                                                              Please continue to have hope!

                                                                                                                              Best wishes,

                                                                                                                              Janner

                                                                                                                              Janner
                                                                                                                              Participant

                                                                                                                                Don't take my post to mean anything abour YOUR husband's prognosis.  I was addressing a totally different topic concerning scans for people who are NED.  There are long term responders with every treatment and there is no reason to think that your husband won't be one of them.  And unlike statistics, you get to try other trials/treatments if you fail one.  If treatment A doesn't work, treatment B might just be the one.  Statistics are just that, numbers.  And wihle they can be used in an abstract sense to make a point, they predict nothing about your husband and how he reacts to his treatments.  Yes, there are many long term survivors on this site! 

                                                                                                                                I do think I would be more honest with my daughter if I were in that position.  This is a serious diagnosis and, as a daughter,  I'd want to be a part of everything going on even if I wasn't there in person.  Staying at school does keep her from the daily grind of the disease,but it sounds as if she doesn't know what is really happening.  I might feel cheated if I were her.  There is no right or wrong with telling or not going into detail with your daughter – much depends on her personality and your family dynamics.  My father is stage IV right now and I am just projecting myself into the situation (trying to imagine being in college again), but I'd want to be informed.  That's just MY personality.

                                                                                                                                Please continue to have hope!

                                                                                                                                Best wishes,

                                                                                                                                Janner

                                                                                                                                kpcollins31
                                                                                                                                Participant

                                                                                                                                  Wow – I was tied up and unable to check the site until now and look at all these responses. My simplistic takeaway is that just because you feel fine, it does not necessarily mean you are.

                                                                                                                                  Relative to some other questions, I had asked about the BRAF mutation – we do have tissue available to support the test. My oncologist was very familiar with Zelboraf and he indicated we could cross that bridge if we get there. His feeling was that the benefits are often short lived and then the melanoma would likely come back with a vengeance (but it could buy you another 12-13 months). 

                                                                                                                                  I got the impression from some of the above posts that I am not taking the disease seriously because I am not undergoing any treatment currently and I am not going through more frequent scans. My oncologist is a melanoma specialist and we have discussed treatment options and scan frequency. All of us on this board know there is no magic treatment that cures us – some people respond to treatments and others do not. I am relatively young, strong, and ready to fight if/when the time comes. For now, my focus is making sure that my family is taken care of and enjoying time with them.I doubt I am alone in this regard.     

                                                                                                                                  Kevin  

                                                                                                                                  kpcollins31
                                                                                                                                  Participant

                                                                                                                                    Wow – I was tied up and unable to check the site until now and look at all these responses. My simplistic takeaway is that just because you feel fine, it does not necessarily mean you are.

                                                                                                                                    Relative to some other questions, I had asked about the BRAF mutation – we do have tissue available to support the test. My oncologist was very familiar with Zelboraf and he indicated we could cross that bridge if we get there. His feeling was that the benefits are often short lived and then the melanoma would likely come back with a vengeance (but it could buy you another 12-13 months). 

                                                                                                                                    I got the impression from some of the above posts that I am not taking the disease seriously because I am not undergoing any treatment currently and I am not going through more frequent scans. My oncologist is a melanoma specialist and we have discussed treatment options and scan frequency. All of us on this board know there is no magic treatment that cures us – some people respond to treatments and others do not. I am relatively young, strong, and ready to fight if/when the time comes. For now, my focus is making sure that my family is taken care of and enjoying time with them.I doubt I am alone in this regard.     

                                                                                                                                    Kevin  

                                                                                                                                    _Paul_
                                                                                                                                    Participant

                                                                                                                                      Like someone else said having a positive outlook is one of your best weapons. It just makes sense any way you look at it. I know that I have an increased risk of recurrence because I am stage 3. But I also know that right now I am physically unaffected by the disease (i.e. don't have any symptoms). So even if I have a recurrence and a shorter lifespan, I would not be making the most of the remaining time if I was to be caught up in self-pity and fear. That would be a huge waste of my precious time!

                                                                                                                                      My melanoma oncologist and I had a long discussion about scans. She says there is no evidence to support that scans actually increase lifespans. Those who have scans showing recurrence and who undergo heroic surgeries and treatments do not statistically live longer as a group than those not receiving scans in the first place. From what I understand the statistical variance with melanoma is quite large. It is more "random" than other cancers.

                                                                                                                                      So one can take this information in different ways. Each of us suffering from the disease is likely to have a unique experience from one another which in my mind is very hopeful. Even though I have a higher risk of recurrence my journey through this disease may very well have a positive outcome. On the other hand the randomness can drive one nuts.

                                                                                                                                      Given all that for me it just makes sense to do my best to fight back (e.g. clinical trial, healthy lifestyle, limit sugar [not hard since I am also diabetic!]), assume the best until I know otherwise, trust in God and accept his will.

                                                                                                                                      – Paul.

                                                                                                                                      _Paul_
                                                                                                                                      Participant

                                                                                                                                        Like someone else said having a positive outlook is one of your best weapons. It just makes sense any way you look at it. I know that I have an increased risk of recurrence because I am stage 3. But I also know that right now I am physically unaffected by the disease (i.e. don't have any symptoms). So even if I have a recurrence and a shorter lifespan, I would not be making the most of the remaining time if I was to be caught up in self-pity and fear. That would be a huge waste of my precious time!

                                                                                                                                        My melanoma oncologist and I had a long discussion about scans. She says there is no evidence to support that scans actually increase lifespans. Those who have scans showing recurrence and who undergo heroic surgeries and treatments do not statistically live longer as a group than those not receiving scans in the first place. From what I understand the statistical variance with melanoma is quite large. It is more "random" than other cancers.

                                                                                                                                        So one can take this information in different ways. Each of us suffering from the disease is likely to have a unique experience from one another which in my mind is very hopeful. Even though I have a higher risk of recurrence my journey through this disease may very well have a positive outcome. On the other hand the randomness can drive one nuts.

                                                                                                                                        Given all that for me it just makes sense to do my best to fight back (e.g. clinical trial, healthy lifestyle, limit sugar [not hard since I am also diabetic!]), assume the best until I know otherwise, trust in God and accept his will.

                                                                                                                                        – Paul.

                                                                                                                                        dellriol
                                                                                                                                        Participant

                                                                                                                                          In my case, we are now doing brain MRI and body CT bimonthly.  I'm not sure I care if the scans increase my chances of long term survival…..I just want to KNOW where I stand.  I don't like the idea of giving melanoma a six month to twelve month headstart in this race…..it already gets enough of an advantage….I'm a pretty positive person, determined to fight  this.But I like having a "scorecard" to know how it's going.

                                                                                                                                          dellriol
                                                                                                                                          Participant

                                                                                                                                            In my case, we are now doing brain MRI and body CT bimonthly.  I'm not sure I care if the scans increase my chances of long term survival…..I just want to KNOW where I stand.  I don't like the idea of giving melanoma a six month to twelve month headstart in this race…..it already gets enough of an advantage….I'm a pretty positive person, determined to fight  this.But I like having a "scorecard" to know how it's going.

                                                                                                                                            bkinman
                                                                                                                                            Participant

                                                                                                                                              I am in your camp.  I just want to know.  My first occurance was in 2008. Nothing in lymphnodes.  Felt a knot on same arm in May 2012 no other symptoms. Had it removed – melanoma. Took Yervoy, felt another knot on arm Jan 2013 – melanoma again.  Did PET and had spot on liver.  Have BRAF so now am on Zelboraf. Liver met went from 2.4 cm (jan) – 4 cm (feb) to 2.2 cm April (started z in Jan).

                                                                                                                                               

                                                                                                                                              I have never had any "symptoms" of Melanoma, only the knots I felt in my arm.  I just want to know, I will do the scans as frequently as possible.

                                                                                                                                               

                                                                                                                                              Becky smiley

                                                                                                                                              bkinman
                                                                                                                                              Participant

                                                                                                                                                I am in your camp.  I just want to know.  My first occurance was in 2008. Nothing in lymphnodes.  Felt a knot on same arm in May 2012 no other symptoms. Had it removed – melanoma. Took Yervoy, felt another knot on arm Jan 2013 – melanoma again.  Did PET and had spot on liver.  Have BRAF so now am on Zelboraf. Liver met went from 2.4 cm (jan) – 4 cm (feb) to 2.2 cm April (started z in Jan).

                                                                                                                                                 

                                                                                                                                                I have never had any "symptoms" of Melanoma, only the knots I felt in my arm.  I just want to know, I will do the scans as frequently as possible.

                                                                                                                                                 

                                                                                                                                                Becky smiley

                                                                                                                                                bkinman
                                                                                                                                                Participant

                                                                                                                                                  I am in your camp.  I just want to know.  My first occurance was in 2008. Nothing in lymphnodes.  Felt a knot on same arm in May 2012 no other symptoms. Had it removed – melanoma. Took Yervoy, felt another knot on arm Jan 2013 – melanoma again.  Did PET and had spot on liver.  Have BRAF so now am on Zelboraf. Liver met went from 2.4 cm (jan) – 4 cm (feb) to 2.2 cm April (started z in Jan).

                                                                                                                                                   

                                                                                                                                                  I have never had any "symptoms" of Melanoma, only the knots I felt in my arm.  I just want to know, I will do the scans as frequently as possible.

                                                                                                                                                   

                                                                                                                                                  Becky smiley

                                                                                                                                                  dellriol
                                                                                                                                                  Participant

                                                                                                                                                    In my case, we are now doing brain MRI and body CT bimonthly.  I'm not sure I care if the scans increase my chances of long term survival…..I just want to KNOW where I stand.  I don't like the idea of giving melanoma a six month to twelve month headstart in this race…..it already gets enough of an advantage….I'm a pretty positive person, determined to fight  this.But I like having a "scorecard" to know how it's going.

                                                                                                                                                    _Paul_
                                                                                                                                                    Participant

                                                                                                                                                      Like someone else said having a positive outlook is one of your best weapons. It just makes sense any way you look at it. I know that I have an increased risk of recurrence because I am stage 3. But I also know that right now I am physically unaffected by the disease (i.e. don't have any symptoms). So even if I have a recurrence and a shorter lifespan, I would not be making the most of the remaining time if I was to be caught up in self-pity and fear. That would be a huge waste of my precious time!

                                                                                                                                                      My melanoma oncologist and I had a long discussion about scans. She says there is no evidence to support that scans actually increase lifespans. Those who have scans showing recurrence and who undergo heroic surgeries and treatments do not statistically live longer as a group than those not receiving scans in the first place. From what I understand the statistical variance with melanoma is quite large. It is more "random" than other cancers.

                                                                                                                                                      So one can take this information in different ways. Each of us suffering from the disease is likely to have a unique experience from one another which in my mind is very hopeful. Even though I have a higher risk of recurrence my journey through this disease may very well have a positive outcome. On the other hand the randomness can drive one nuts.

                                                                                                                                                      Given all that for me it just makes sense to do my best to fight back (e.g. clinical trial, healthy lifestyle, limit sugar [not hard since I am also diabetic!]), assume the best until I know otherwise, trust in God and accept his will.

                                                                                                                                                      – Paul.

                                                                                                                                                      kpcollins31
                                                                                                                                                      Participant

                                                                                                                                                        Wow – I was tied up and unable to check the site until now and look at all these responses. My simplistic takeaway is that just because you feel fine, it does not necessarily mean you are.

                                                                                                                                                        Relative to some other questions, I had asked about the BRAF mutation – we do have tissue available to support the test. My oncologist was very familiar with Zelboraf and he indicated we could cross that bridge if we get there. His feeling was that the benefits are often short lived and then the melanoma would likely come back with a vengeance (but it could buy you another 12-13 months). 

                                                                                                                                                        I got the impression from some of the above posts that I am not taking the disease seriously because I am not undergoing any treatment currently and I am not going through more frequent scans. My oncologist is a melanoma specialist and we have discussed treatment options and scan frequency. All of us on this board know there is no magic treatment that cures us – some people respond to treatments and others do not. I am relatively young, strong, and ready to fight if/when the time comes. For now, my focus is making sure that my family is taken care of and enjoying time with them.I doubt I am alone in this regard.     

                                                                                                                                                        Kevin  

                                                                                                                                                        Janner
                                                                                                                                                        Participant

                                                                                                                                                          Don't take my post to mean anything abour YOUR husband's prognosis.  I was addressing a totally different topic concerning scans for people who are NED.  There are long term responders with every treatment and there is no reason to think that your husband won't be one of them.  And unlike statistics, you get to try other trials/treatments if you fail one.  If treatment A doesn't work, treatment B might just be the one.  Statistics are just that, numbers.  And wihle they can be used in an abstract sense to make a point, they predict nothing about your husband and how he reacts to his treatments.  Yes, there are many long term survivors on this site! 

                                                                                                                                                          I do think I would be more honest with my daughter if I were in that position.  This is a serious diagnosis and, as a daughter,  I'd want to be a part of everything going on even if I wasn't there in person.  Staying at school does keep her from the daily grind of the disease,but it sounds as if she doesn't know what is really happening.  I might feel cheated if I were her.  There is no right or wrong with telling or not going into detail with your daughter – much depends on her personality and your family dynamics.  My father is stage IV right now and I am just projecting myself into the situation (trying to imagine being in college again), but I'd want to be informed.  That's just MY personality.

                                                                                                                                                          Please continue to have hope!

                                                                                                                                                          Best wishes,

                                                                                                                                                          Janner

                                                                                                                                                        JC
                                                                                                                                                        Participant

                                                                                                                                                          You went from Stage I less than 1mm to Stage IV?  That's why I don't buy "low risk, don't worry"

                                                                                                                                                          JC
                                                                                                                                                          Participant

                                                                                                                                                            You went from Stage I less than 1mm to Stage IV?  That's why I don't buy "low risk, don't worry"

                                                                                                                                                            JC
                                                                                                                                                            Participant

                                                                                                                                                              You went from Stage I less than 1mm to Stage IV?  That's why I don't buy "low risk, don't worry"

                                                                                                                                                              JoshF
                                                                                                                                                              Participant

                                                                                                                                                                KpCollins-

                                                                                                                                                                Interesting timing on this topic. I just went for scans and have been NED for 22 months. My onc considers this 2 years and says that scans at this point would be more harmful than good. He is a melanoma specialist and is well known and respected in Chicago. Now here's the kicker…I never had a primary that my dermatologist was concerned about. Yes I had 1 or 2 things removed in past but came back clear. During a visit I asked him about a tiny lump in face. He said probably a sebaceous cyst…..well it was melanoma. Once I found specialist he went through old path slides to rule out previous mole removals….all clear. I had the PET/CT…all clear. My oncologist felt this was a primary dermal melanoma which soke of the fine people on this board educated me on. It's rare but he said it is not out of the realm and given that this lump in my cheek was there for a year; he felt is was likely. Anyway,  went to have wide excision of cheek as margins from derm removing "cyst" weren't clear and had SLNB under right jaw bone. Finally, margins^ SLNB clear and no treatment. Tumor was pea sized…width was 5.7mm and depth would be considered stage III but he didn't stage me and said it was irrelevant as I'm NED now and had no lymph node involvement. I asked about blood stream and given that lump in my cheek was there for close to 18 months he felt it was highly unlikely or would be first case in his close to 25 years of delaing with melanoma.

                                                                                                                                                                 Now the point of my story…I was really uncomfortable about my situation as many people who are told they are OK end up in horrible situations with this disease. So I went to another melanoma specialist who said I'm stage 4 and should be scanned every 3 months with brain MRI every 6 months. He said primary dermal is 2-3% of cases and hard to distinguisg because it presents as metastatic. But he also said umknown primary is 2-3% as well….yes I was more confused. Anyway, I followed his follow up plan but continued seeing both doctors. They differed on everything…chance of recurrence (one said 30% and the other said 10%), metastatic vs. primary dermal etc… The more aggressive onc dropped out of my insurance plan at end of 2012 so I scheduled first set of scans in 2013 with more conservative onc which brings us today. I freaked a bit when I was told scans wouldn't be necessary as my risk of recurrence drops significantly now that I'm close to 2 years (5% chance or less). I too wonder how I can stay diligent as I feel great, stay active and obviously are much more protective of my skin. I was told blood tests for LDH levels will assist them in determining metatstatic disease. My onc isn't opposed to scans but says he weighs risk and reward and feels it's more risk. Yes I'm freaked out and think daily about micro cells floating around waiting to cause trouble. So I know your thought process and you have to do what makes you comfortable. I'm going to ask for annual scans or at least for 2014 & 2015 then maybe feel comfortable…I hope. Best of luck to you.

                                                                                                                                                                 

                                                                                                                                                                Josh

                                                                                                                                                                JoshF
                                                                                                                                                                Participant

                                                                                                                                                                  KpCollins-

                                                                                                                                                                  Interesting timing on this topic. I just went for scans and have been NED for 22 months. My onc considers this 2 years and says that scans at this point would be more harmful than good. He is a melanoma specialist and is well known and respected in Chicago. Now here's the kicker…I never had a primary that my dermatologist was concerned about. Yes I had 1 or 2 things removed in past but came back clear. During a visit I asked him about a tiny lump in face. He said probably a sebaceous cyst…..well it was melanoma. Once I found specialist he went through old path slides to rule out previous mole removals….all clear. I had the PET/CT…all clear. My oncologist felt this was a primary dermal melanoma which soke of the fine people on this board educated me on. It's rare but he said it is not out of the realm and given that this lump in my cheek was there for a year; he felt is was likely. Anyway,  went to have wide excision of cheek as margins from derm removing "cyst" weren't clear and had SLNB under right jaw bone. Finally, margins^ SLNB clear and no treatment. Tumor was pea sized…width was 5.7mm and depth would be considered stage III but he didn't stage me and said it was irrelevant as I'm NED now and had no lymph node involvement. I asked about blood stream and given that lump in my cheek was there for close to 18 months he felt it was highly unlikely or would be first case in his close to 25 years of delaing with melanoma.

                                                                                                                                                                   Now the point of my story…I was really uncomfortable about my situation as many people who are told they are OK end up in horrible situations with this disease. So I went to another melanoma specialist who said I'm stage 4 and should be scanned every 3 months with brain MRI every 6 months. He said primary dermal is 2-3% of cases and hard to distinguisg because it presents as metastatic. But he also said umknown primary is 2-3% as well….yes I was more confused. Anyway, I followed his follow up plan but continued seeing both doctors. They differed on everything…chance of recurrence (one said 30% and the other said 10%), metastatic vs. primary dermal etc… The more aggressive onc dropped out of my insurance plan at end of 2012 so I scheduled first set of scans in 2013 with more conservative onc which brings us today. I freaked a bit when I was told scans wouldn't be necessary as my risk of recurrence drops significantly now that I'm close to 2 years (5% chance or less). I too wonder how I can stay diligent as I feel great, stay active and obviously are much more protective of my skin. I was told blood tests for LDH levels will assist them in determining metatstatic disease. My onc isn't opposed to scans but says he weighs risk and reward and feels it's more risk. Yes I'm freaked out and think daily about micro cells floating around waiting to cause trouble. So I know your thought process and you have to do what makes you comfortable. I'm going to ask for annual scans or at least for 2014 & 2015 then maybe feel comfortable…I hope. Best of luck to you.

                                                                                                                                                                   

                                                                                                                                                                  Josh

                                                                                                                                                                  JoshF
                                                                                                                                                                  Participant

                                                                                                                                                                    KpCollins-

                                                                                                                                                                    Interesting timing on this topic. I just went for scans and have been NED for 22 months. My onc considers this 2 years and says that scans at this point would be more harmful than good. He is a melanoma specialist and is well known and respected in Chicago. Now here's the kicker…I never had a primary that my dermatologist was concerned about. Yes I had 1 or 2 things removed in past but came back clear. During a visit I asked him about a tiny lump in face. He said probably a sebaceous cyst…..well it was melanoma. Once I found specialist he went through old path slides to rule out previous mole removals….all clear. I had the PET/CT…all clear. My oncologist felt this was a primary dermal melanoma which soke of the fine people on this board educated me on. It's rare but he said it is not out of the realm and given that this lump in my cheek was there for a year; he felt is was likely. Anyway,  went to have wide excision of cheek as margins from derm removing "cyst" weren't clear and had SLNB under right jaw bone. Finally, margins^ SLNB clear and no treatment. Tumor was pea sized…width was 5.7mm and depth would be considered stage III but he didn't stage me and said it was irrelevant as I'm NED now and had no lymph node involvement. I asked about blood stream and given that lump in my cheek was there for close to 18 months he felt it was highly unlikely or would be first case in his close to 25 years of delaing with melanoma.

                                                                                                                                                                     Now the point of my story…I was really uncomfortable about my situation as many people who are told they are OK end up in horrible situations with this disease. So I went to another melanoma specialist who said I'm stage 4 and should be scanned every 3 months with brain MRI every 6 months. He said primary dermal is 2-3% of cases and hard to distinguisg because it presents as metastatic. But he also said umknown primary is 2-3% as well….yes I was more confused. Anyway, I followed his follow up plan but continued seeing both doctors. They differed on everything…chance of recurrence (one said 30% and the other said 10%), metastatic vs. primary dermal etc… The more aggressive onc dropped out of my insurance plan at end of 2012 so I scheduled first set of scans in 2013 with more conservative onc which brings us today. I freaked a bit when I was told scans wouldn't be necessary as my risk of recurrence drops significantly now that I'm close to 2 years (5% chance or less). I too wonder how I can stay diligent as I feel great, stay active and obviously are much more protective of my skin. I was told blood tests for LDH levels will assist them in determining metatstatic disease. My onc isn't opposed to scans but says he weighs risk and reward and feels it's more risk. Yes I'm freaked out and think daily about micro cells floating around waiting to cause trouble. So I know your thought process and you have to do what makes you comfortable. I'm going to ask for annual scans or at least for 2014 & 2015 then maybe feel comfortable…I hope. Best of luck to you.

                                                                                                                                                                     

                                                                                                                                                                    Josh

                                                                                                                                                                    JC
                                                                                                                                                                    Participant

                                                                                                                                                                      who are your chicago docs?  which is the conservative one?  maybe try a 3rd and see what they say?

                                                                                                                                                                      JC
                                                                                                                                                                      Participant

                                                                                                                                                                        who are your chicago docs?  which is the conservative one?  maybe try a 3rd and see what they say?

                                                                                                                                                                          JoshF
                                                                                                                                                                          Participant

                                                                                                                                                                            Kaufman at Rush and Richards at Lutheran General. I thought about going to Northwestern, Loyola or U of Chicago….any suggestions or experiences you can offer?

                                                                                                                                                                            JoshF
                                                                                                                                                                            Participant

                                                                                                                                                                              Kaufman at Rush and Richards at Lutheran General. I thought about going to Northwestern, Loyola or U of Chicago….any suggestions or experiences you can offer?

                                                                                                                                                                              JoshF
                                                                                                                                                                              Participant

                                                                                                                                                                                Kaufman at Rush and Richards at Lutheran General. I thought about going to Northwestern, Loyola or U of Chicago….any suggestions or experiences you can offer?

                                                                                                                                                                              JC
                                                                                                                                                                              Participant

                                                                                                                                                                                who are your chicago docs?  which is the conservative one?  maybe try a 3rd and see what they say?

                                                                                                                                                                                JC
                                                                                                                                                                                Participant

                                                                                                                                                                                  What I know of:

                                                                                                                                                                                  Dr Kaufman at Rush

                                                                                                                                                                                  Dr Kuzel at Northwestern

                                                                                                                                                                                  Dr Brockstein at NorthShore

                                                                                                                                                                                  Dr Gajewski at U of Chicago

                                                                                                                                                                                  Dr Richards at Lutheran General

                                                                                                                                                                                  Dr Clark at Loyola

                                                                                                                                                                                   

                                                                                                                                                                                  Might not hurt to see what Kuzel would recommend if you make an appt at Northwestern

                                                                                                                                                                                  JC
                                                                                                                                                                                  Participant

                                                                                                                                                                                    What I know of:

                                                                                                                                                                                    Dr Kaufman at Rush

                                                                                                                                                                                    Dr Kuzel at Northwestern

                                                                                                                                                                                    Dr Brockstein at NorthShore

                                                                                                                                                                                    Dr Gajewski at U of Chicago

                                                                                                                                                                                    Dr Richards at Lutheran General

                                                                                                                                                                                    Dr Clark at Loyola

                                                                                                                                                                                     

                                                                                                                                                                                    Might not hurt to see what Kuzel would recommend if you make an appt at Northwestern

                                                                                                                                                                                    JC
                                                                                                                                                                                    Participant

                                                                                                                                                                                      What I know of:

                                                                                                                                                                                      Dr Kaufman at Rush

                                                                                                                                                                                      Dr Kuzel at Northwestern

                                                                                                                                                                                      Dr Brockstein at NorthShore

                                                                                                                                                                                      Dr Gajewski at U of Chicago

                                                                                                                                                                                      Dr Richards at Lutheran General

                                                                                                                                                                                      Dr Clark at Loyola

                                                                                                                                                                                       

                                                                                                                                                                                      Might not hurt to see what Kuzel would recommend if you make an appt at Northwestern

                                                                                                                                                                                      JC
                                                                                                                                                                                      Participant

                                                                                                                                                                                        or even going outside Chicago to maybe Madison (UW Carbone Cancer Center)?   

                                                                                                                                                                                        JC
                                                                                                                                                                                        Participant

                                                                                                                                                                                          or even going outside Chicago to maybe Madison (UW Carbone Cancer Center)?   

                                                                                                                                                                                          JC
                                                                                                                                                                                          Participant

                                                                                                                                                                                            or even going outside Chicago to maybe Madison (UW Carbone Cancer Center)?   

                                                                                                                                                                                            vicuk
                                                                                                                                                                                            Participant

                                                                                                                                                                                              Hi there,

                                                                                                                                                                                              My friend is stage iv and is as fit as a fiddle. She's now outlived her prognosis. She is training for a 10k and 5k race at the moment. I think though, from what I have found out about this disease, that i would want her to be scanned often even at stage 3. If you are scanned, you know what you are dealing with. She feels great and we say that as long as she hasnt lost weight, can pass stools/water ok, no daft headaches, no trouble breathing/ coughing, no pain in her hips and double vision, shakes etc, then things will probs be ok but only until her next scan and to lessen scanxiety. In my humble opinion, for either piece of mind or to arm up for stage iv battle, I would be wanting scans. You can be in front of the 8 ball at stage 4 nowadays. I have read about many people living with this disease for many years at stage iv and now I feel that great things are coming. Don'tjust go on what one bloke( doctor or not) says. What do you think/want? It's getting a balance between knowing what's going on and living your life.

                                                                                                                                                                                              I once read at the start of my research, that many cases of melanoma were only diagnosed on the autopsy table.

                                                                                                                                                                                              Best regards,

                                                                                                                                                                                              Vic.

                                                                                                                                                                                              vicuk
                                                                                                                                                                                              Participant

                                                                                                                                                                                                Hi there,

                                                                                                                                                                                                My friend is stage iv and is as fit as a fiddle. She's now outlived her prognosis. She is training for a 10k and 5k race at the moment. I think though, from what I have found out about this disease, that i would want her to be scanned often even at stage 3. If you are scanned, you know what you are dealing with. She feels great and we say that as long as she hasnt lost weight, can pass stools/water ok, no daft headaches, no trouble breathing/ coughing, no pain in her hips and double vision, shakes etc, then things will probs be ok but only until her next scan and to lessen scanxiety. In my humble opinion, for either piece of mind or to arm up for stage iv battle, I would be wanting scans. You can be in front of the 8 ball at stage 4 nowadays. I have read about many people living with this disease for many years at stage iv and now I feel that great things are coming. Don'tjust go on what one bloke( doctor or not) says. What do you think/want? It's getting a balance between knowing what's going on and living your life.

                                                                                                                                                                                                I once read at the start of my research, that many cases of melanoma were only diagnosed on the autopsy table.

                                                                                                                                                                                                Best regards,

                                                                                                                                                                                                Vic.

                                                                                                                                                                                                vicuk
                                                                                                                                                                                                Participant

                                                                                                                                                                                                  Hi there,

                                                                                                                                                                                                  My friend is stage iv and is as fit as a fiddle. She's now outlived her prognosis. She is training for a 10k and 5k race at the moment. I think though, from what I have found out about this disease, that i would want her to be scanned often even at stage 3. If you are scanned, you know what you are dealing with. She feels great and we say that as long as she hasnt lost weight, can pass stools/water ok, no daft headaches, no trouble breathing/ coughing, no pain in her hips and double vision, shakes etc, then things will probs be ok but only until her next scan and to lessen scanxiety. In my humble opinion, for either piece of mind or to arm up for stage iv battle, I would be wanting scans. You can be in front of the 8 ball at stage 4 nowadays. I have read about many people living with this disease for many years at stage iv and now I feel that great things are coming. Don'tjust go on what one bloke( doctor or not) says. What do you think/want? It's getting a balance between knowing what's going on and living your life.

                                                                                                                                                                                                  I once read at the start of my research, that many cases of melanoma were only diagnosed on the autopsy table.

                                                                                                                                                                                                  Best regards,

                                                                                                                                                                                                  Vic.

                                                                                                                                                                                                  Charlie S
                                                                                                                                                                                                  Participant

                                                                                                                                                                                                    Interesting how many people jump to conclusions  The State of North Carolina is fortunate to be one of few states that have THREE Comprehsive Cancer Centers; Wake Forest Baptist is one of them.

                                                                                                                                                                                                    Now.  Melanoma is not a disease of infection.  I know, I know, it seems like a word game, but the words are important, so bear with me.

                                                                                                                                                                                                    There are no "few sentinel nodes". A sentinel node is one, it is singular, it is isolated, it does not have a plural; it is the only and nothing else tthan the FIRST lymph node in the draining pathway chain of a primary. and it can either be negative (no signs of further involvement) or it can have micro-mets ( cellular evidence of melanoma), or it could be worse.

                                                                                                                                                                                                    In your case, you did not mention what brought you to have surgery to remove that one lymph node in your upper arm.

                                                                                                                                                                                                    Did you have something on your skin that was removed before or did you just have a swollen node only?

                                                                                                                                                                                                    It IS important.

                                                                                                                                                                                                    Although I get your concerns, it is unclear how this problem started and without that information neither you nor I have a clue.

                                                                                                                                                                                                    Charlie S

                                                                                                                                                                                                     

                                                                                                                                                                                                    Charlie S
                                                                                                                                                                                                    Participant

                                                                                                                                                                                                      Interesting how many people jump to conclusions  The State of North Carolina is fortunate to be one of few states that have THREE Comprehsive Cancer Centers; Wake Forest Baptist is one of them.

                                                                                                                                                                                                      Now.  Melanoma is not a disease of infection.  I know, I know, it seems like a word game, but the words are important, so bear with me.

                                                                                                                                                                                                      There are no "few sentinel nodes". A sentinel node is one, it is singular, it is isolated, it does not have a plural; it is the only and nothing else tthan the FIRST lymph node in the draining pathway chain of a primary. and it can either be negative (no signs of further involvement) or it can have micro-mets ( cellular evidence of melanoma), or it could be worse.

                                                                                                                                                                                                      In your case, you did not mention what brought you to have surgery to remove that one lymph node in your upper arm.

                                                                                                                                                                                                      Did you have something on your skin that was removed before or did you just have a swollen node only?

                                                                                                                                                                                                      It IS important.

                                                                                                                                                                                                      Although I get your concerns, it is unclear how this problem started and without that information neither you nor I have a clue.

                                                                                                                                                                                                      Charlie S

                                                                                                                                                                                                       

                                                                                                                                                                                                        kpcollins31
                                                                                                                                                                                                        Participant

                                                                                                                                                                                                          I tried to fill out the profile to give the full picture, but here is the snapshot… the primary was on my left forearm (diagnosed Feb 2011)… it was large and put me at 2c right off the bat. This single swollen node was noticed and removed in Sep 2012 from my left upper arm (inside of arm around the same elevation as biceps/triceps). While only a single node was found, it did exhibit extracapsular extension which I understand is not a good thing.  

                                                                                                                                                                                                          kpcollins31
                                                                                                                                                                                                          Participant

                                                                                                                                                                                                            I tried to fill out the profile to give the full picture, but here is the snapshot… the primary was on my left forearm (diagnosed Feb 2011)… it was large and put me at 2c right off the bat. This single swollen node was noticed and removed in Sep 2012 from my left upper arm (inside of arm around the same elevation as biceps/triceps). While only a single node was found, it did exhibit extracapsular extension which I understand is not a good thing.  

                                                                                                                                                                                                            kpcollins31
                                                                                                                                                                                                            Participant

                                                                                                                                                                                                              I tried to fill out the profile to give the full picture, but here is the snapshot… the primary was on my left forearm (diagnosed Feb 2011)… it was large and put me at 2c right off the bat. This single swollen node was noticed and removed in Sep 2012 from my left upper arm (inside of arm around the same elevation as biceps/triceps). While only a single node was found, it did exhibit extracapsular extension which I understand is not a good thing.  

                                                                                                                                                                                                            Charlie S
                                                                                                                                                                                                            Participant

                                                                                                                                                                                                              Interesting how many people jump to conclusions  The State of North Carolina is fortunate to be one of few states that have THREE Comprehsive Cancer Centers; Wake Forest Baptist is one of them.

                                                                                                                                                                                                              Now.  Melanoma is not a disease of infection.  I know, I know, it seems like a word game, but the words are important, so bear with me.

                                                                                                                                                                                                              There are no "few sentinel nodes". A sentinel node is one, it is singular, it is isolated, it does not have a plural; it is the only and nothing else tthan the FIRST lymph node in the draining pathway chain of a primary. and it can either be negative (no signs of further involvement) or it can have micro-mets ( cellular evidence of melanoma), or it could be worse.

                                                                                                                                                                                                              In your case, you did not mention what brought you to have surgery to remove that one lymph node in your upper arm.

                                                                                                                                                                                                              Did you have something on your skin that was removed before or did you just have a swollen node only?

                                                                                                                                                                                                              It IS important.

                                                                                                                                                                                                              Although I get your concerns, it is unclear how this problem started and without that information neither you nor I have a clue.

                                                                                                                                                                                                              Charlie S

                                                                                                                                                                                                               

                                                                                                                                                                                                              buffcody
                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                I don't have the full reference.  Maybe someone else does and can present it.  The latest webinar a few weeks ago on this site presented a brilliant hour plus long interview with three leading melanoma expert oncologists from different melanoma centers of excellence who had a combined total of more than 75 years experience working with metastatic melanoma patients.  They were unanimous in their scepticism about frequent scans.  They spoke of the importance of careful regular physical examinations, blood testing, and questioning in depth of patients for any sign of change from the time of previous metastasis.  They also believed in targeted scanning when symptoms were present.  I had been of the mind that very regular full body and brain scans were absolutely necessary before watching this webinar.  Now my opinion had changed.  I'm still being scanned at least every three months.  But I will be much more comfortable now if my doctor decides on less scanning in the future when this change seems called for. 

                                                                                                                                                                                                                buffcody
                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                  I don't have the full reference.  Maybe someone else does and can present it.  The latest webinar a few weeks ago on this site presented a brilliant hour plus long interview with three leading melanoma expert oncologists from different melanoma centers of excellence who had a combined total of more than 75 years experience working with metastatic melanoma patients.  They were unanimous in their scepticism about frequent scans.  They spoke of the importance of careful regular physical examinations, blood testing, and questioning in depth of patients for any sign of change from the time of previous metastasis.  They also believed in targeted scanning when symptoms were present.  I had been of the mind that very regular full body and brain scans were absolutely necessary before watching this webinar.  Now my opinion had changed.  I'm still being scanned at least every three months.  But I will be much more comfortable now if my doctor decides on less scanning in the future when this change seems called for. 

                                                                                                                                                                                                                  buffcody
                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                    I don't have the full reference.  Maybe someone else does and can present it.  The latest webinar a few weeks ago on this site presented a brilliant hour plus long interview with three leading melanoma expert oncologists from different melanoma centers of excellence who had a combined total of more than 75 years experience working with metastatic melanoma patients.  They were unanimous in their scepticism about frequent scans.  They spoke of the importance of careful regular physical examinations, blood testing, and questioning in depth of patients for any sign of change from the time of previous metastasis.  They also believed in targeted scanning when symptoms were present.  I had been of the mind that very regular full body and brain scans were absolutely necessary before watching this webinar.  Now my opinion had changed.  I'm still being scanned at least every three months.  But I will be much more comfortable now if my doctor decides on less scanning in the future when this change seems called for. 

                                                                                                                                                                                                                    LuckyMan51
                                                                                                                                                                                                                    Participant
                                                                                                                                                                                                                      I am a huge believer in scans as its the only way to see inside and allow early intervention. My lung 1st met was diagnosed after a routine scan following a strep infection in the blood. Surgically removed. All clear for 6 mos until a small brain met detected and cyber knife removed. The combo of radiation and the yervoy/ Ippy was prescribed in the hope of stimulating a T cell hyper attack of the broken up brain tumor looking for an abscopal effect response. If I hadn’t been getting these scans I would not have found the lung met later, and not have found the brain met later and possibly would have had a tumor load that would have made the chosen course of treatment less likely. If medical science has the technology why wait until you have a more advanced issue to address the root problem. I feel great and am in excellent health and nobody would ever have any suspicions otherwise but I know and my Drs know that this proactive attack on the Melanoma is what works for me. Lots of choices in this treatment and its important for each of us to be comfortable with their own choice of treatment. Best of luck in facing the challenge but stay vigilant as this beast climbs in the windows late at night.
                                                                                                                                                                                                                      LuckyMan51
                                                                                                                                                                                                                      Participant
                                                                                                                                                                                                                        I am a huge believer in scans as its the only way to see inside and allow early intervention. My lung 1st met was diagnosed after a routine scan following a strep infection in the blood. Surgically removed. All clear for 6 mos until a small brain met detected and cyber knife removed. The combo of radiation and the yervoy/ Ippy was prescribed in the hope of stimulating a T cell hyper attack of the broken up brain tumor looking for an abscopal effect response. If I hadn’t been getting these scans I would not have found the lung met later, and not have found the brain met later and possibly would have had a tumor load that would have made the chosen course of treatment less likely. If medical science has the technology why wait until you have a more advanced issue to address the root problem. I feel great and am in excellent health and nobody would ever have any suspicions otherwise but I know and my Drs know that this proactive attack on the Melanoma is what works for me. Lots of choices in this treatment and its important for each of us to be comfortable with their own choice of treatment. Best of luck in facing the challenge but stay vigilant as this beast climbs in the windows late at night.
                                                                                                                                                                                                                        LuckyMan51
                                                                                                                                                                                                                        Participant
                                                                                                                                                                                                                          I am a huge believer in scans as its the only way to see inside and allow early intervention. My lung 1st met was diagnosed after a routine scan following a strep infection in the blood. Surgically removed. All clear for 6 mos until a small brain met detected and cyber knife removed. The combo of radiation and the yervoy/ Ippy was prescribed in the hope of stimulating a T cell hyper attack of the broken up brain tumor looking for an abscopal effect response. If I hadn’t been getting these scans I would not have found the lung met later, and not have found the brain met later and possibly would have had a tumor load that would have made the chosen course of treatment less likely. If medical science has the technology why wait until you have a more advanced issue to address the root problem. I feel great and am in excellent health and nobody would ever have any suspicions otherwise but I know and my Drs know that this proactive attack on the Melanoma is what works for me. Lots of choices in this treatment and its important for each of us to be comfortable with their own choice of treatment. Best of luck in facing the challenge but stay vigilant as this beast climbs in the windows late at night.
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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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