Do People Survive This?

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

Jason

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

Jason

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

Best of luck in your journey with mel.

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

Best of luck in your journey with mel.

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

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

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

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

Hi Monica,

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

 Best of success and God Bless,

 Jim M.

Hi Monica,

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

 Best of success and God Bless,

 Jim M.

Hi Monica,

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

Hugs

Sharyn

Stage IV

Hi Monica,

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

Hugs

Sharyn

Stage IV

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

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

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

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

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

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

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

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

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

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

Dear Monica,

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

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

Is that positive enough for you?

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

KatyWI, stage IV, NED four months

Dear Monica,

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

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

Is that positive enough for you?

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

KatyWI, stage IV, NED four months

Monica,

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

Monica,

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

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

Joyce from MA

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

Joyce from MA

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

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

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

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

Hi Monica,

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

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

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

Hope you are one of them! Good luck!

dian in spokane

Stage IV, NED 15 months

Hi Monica,

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

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

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

Hope you are one of them! Good luck!

dian in spokane

Stage IV, NED 15 months

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

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

Hey Monica,

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

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

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

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

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

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

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

You aren't alone.

*hugs*

Andy

Hey Monica,

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

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

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

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

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

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

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

You aren't alone.

*hugs*

Andy

Hello Monica,

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

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

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

Take care,

Bruce in NH

10 Year Melanoma Survivor

Hello Monica,

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

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

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

Take care,

Bruce in NH

10 Year Melanoma Survivor

Monica

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

Monica

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

Hi Monica,

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

Jessica Theisen

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

Hi Monica,

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

Jessica Theisen

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

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

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

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

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

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

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

Monica,

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

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

Don't stop living while your waiting,

Linda

Monica,

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

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

Don't stop living while your waiting,

Linda

Hi Monica,

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

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

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

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

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

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

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

…

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

– By: Sri Chinmoy

Hi Monica,

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

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

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

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

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

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

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

…

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

– By: Sri Chinmoy

 Hi Monica,

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

Akilyn

 Hi Monica,

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

Akilyn

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hi Monica.

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

Best wishes for a long life.

Hi Monica.

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

Best wishes for a long life.

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

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

Hi there! 

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

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

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

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

Hi there! 

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

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

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

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

Hi there! 

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

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

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

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

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

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