Told to get my affairs in order–It’s back!

I am so sorry to hear of this news.  My husband's situation is different but I can relate to the bumps along the incision.  His popped up overnight, along with another much larger bump, and they grew at an alarming rate daily.  Fortuneately, for him, the melanoma remained regional.  He has had amazing results (and feels good too) with carbo / taxol chemo.  I'm fairly new to this mess but apparently it's an older treatment with mixed results and I don't think many on here are on it.  I think the Yervoy has better results for more people but the others on the board can set you straight on that.  My husband's tumors were growing too fast for Yervoy.  If the Yervoy does not work, you might want to ask your doctor about the carbo / taxol combination.  Prayers help a lot too.

I am so sorry to hear of this news.  My husband's situation is different but I can relate to the bumps along the incision.  His popped up overnight, along with another much larger bump, and they grew at an alarming rate daily.  Fortuneately, for him, the melanoma remained regional.  He has had amazing results (and feels good too) with carbo / taxol chemo.  I'm fairly new to this mess but apparently it's an older treatment with mixed results and I don't think many on here are on it.  I think the Yervoy has better results for more people but the others on the board can set you straight on that.  My husband's tumors were growing too fast for Yervoy.  If the Yervoy does not work, you might want to ask your doctor about the carbo / taxol combination.  Prayers help a lot too.

I am so sorry to hear of this news.  My husband's situation is different but I can relate to the bumps along the incision.  His popped up overnight, along with another much larger bump, and they grew at an alarming rate daily.  Fortuneately, for him, the melanoma remained regional.  He has had amazing results (and feels good too) with carbo / taxol chemo.  I'm fairly new to this mess but apparently it's an older treatment with mixed results and I don't think many on here are on it.  I think the Yervoy has better results for more people but the others on the board can set you straight on that.  My husband's tumors were growing too fast for Yervoy.  If the Yervoy does not work, you might want to ask your doctor about the carbo / taxol combination.  Prayers help a lot too.

I suppose it is good advice to remind anyone who is retired and/or over the age of 65 to get their affairs in order. Having all your important papers in one place can be a real blessing to your family if you should die at any time of any cause. But Stage IV melanoma is not a death sentence! Certainly not anything imminent. What tends to happen now is that you try to "manage" the disease. You try a treatment. It works for a while– several months, maybe a year or so. Then it stops working and you try something else. This new thing may work for several months or a year or so. Then you try something else. This is emotionally (and sometimes physically) hard to deal with. But as Mark Twain said, rumors of your death are greatly exaggerated right now. 

Does your tumor have the  BRAF mutation? If so, there are serveral new treatments available now or soon that will help. There are also a number of clinical trials you could investigate regardless of your BRAF status, particularly since you don't have brain mets (brain mets eliminate you from most clinical trials).  What the "successful" warriors do now is accept that they can manage the disease a few months at a time. They assume that each new type of treatment will work to control the cancer unless and until they learn otherwise. And they live life fully and enjoy every day as much as possible instead of waiting for the other shoe to drop or waiting for the cancer to be cured. 

Yes, having a recurrance is an emotional blow. But you're not at the end of the line. Not by a long shot! This is just a new phase of an evolving condition. 

I suppose it is good advice to remind anyone who is retired and/or over the age of 65 to get their affairs in order. Having all your important papers in one place can be a real blessing to your family if you should die at any time of any cause. But Stage IV melanoma is not a death sentence! Certainly not anything imminent. What tends to happen now is that you try to "manage" the disease. You try a treatment. It works for a while– several months, maybe a year or so. Then it stops working and you try something else. This new thing may work for several months or a year or so. Then you try something else. This is emotionally (and sometimes physically) hard to deal with. But as Mark Twain said, rumors of your death are greatly exaggerated right now. 

Does your tumor have the  BRAF mutation? If so, there are serveral new treatments available now or soon that will help. There are also a number of clinical trials you could investigate regardless of your BRAF status, particularly since you don't have brain mets (brain mets eliminate you from most clinical trials).  What the "successful" warriors do now is accept that they can manage the disease a few months at a time. They assume that each new type of treatment will work to control the cancer unless and until they learn otherwise. And they live life fully and enjoy every day as much as possible instead of waiting for the other shoe to drop or waiting for the cancer to be cured. 

Yes, having a recurrance is an emotional blow. But you're not at the end of the line. Not by a long shot! This is just a new phase of an evolving condition. 

I suppose it is good advice to remind anyone who is retired and/or over the age of 65 to get their affairs in order. Having all your important papers in one place can be a real blessing to your family if you should die at any time of any cause. But Stage IV melanoma is not a death sentence! Certainly not anything imminent. What tends to happen now is that you try to "manage" the disease. You try a treatment. It works for a while– several months, maybe a year or so. Then it stops working and you try something else. This new thing may work for several months or a year or so. Then you try something else. This is emotionally (and sometimes physically) hard to deal with. But as Mark Twain said, rumors of your death are greatly exaggerated right now. 

Does your tumor have the  BRAF mutation? If so, there are serveral new treatments available now or soon that will help. There are also a number of clinical trials you could investigate regardless of your BRAF status, particularly since you don't have brain mets (brain mets eliminate you from most clinical trials).  What the "successful" warriors do now is accept that they can manage the disease a few months at a time. They assume that each new type of treatment will work to control the cancer unless and until they learn otherwise. And they live life fully and enjoy every day as much as possible instead of waiting for the other shoe to drop or waiting for the cancer to be cured. 

Yes, having a recurrance is an emotional blow. But you're not at the end of the line. Not by a long shot! This is just a new phase of an evolving condition. 

Don’t give up yet. Stage 4 is not death sentence! My husband has been stage 4 for almost 22 months and as of his last scan, he is NED. 4 surgeries (small bowel resection, thoracotomy, craniotomy, and gamma knife), one round of Yervoy and 12 months of Zelboraf got him to where he is. Try to take it day at a time. Our theory is that each day that he is alive, is one day closer to the next medication getting approved. As his oncologist told him at diagnosis, if you have to have melanoma, now is a very good time to have it…there are options. Make sure to have the biopsy checked for the BRaf mutation…Zelboraf has been a miracle drug for my husband. You might also look into Pd-1 trials if Yervoy doesn’t work. Keep in mind that Yervoy can take time…up to 6 months to work.

Don’t give up yet. Stage 4 is not death sentence! My husband has been stage 4 for almost 22 months and as of his last scan, he is NED. 4 surgeries (small bowel resection, thoracotomy, craniotomy, and gamma knife), one round of Yervoy and 12 months of Zelboraf got him to where he is. Try to take it day at a time. Our theory is that each day that he is alive, is one day closer to the next medication getting approved. As his oncologist told him at diagnosis, if you have to have melanoma, now is a very good time to have it…there are options. Make sure to have the biopsy checked for the BRaf mutation…Zelboraf has been a miracle drug for my husband. You might also look into Pd-1 trials if Yervoy doesn’t work. Keep in mind that Yervoy can take time…up to 6 months to work.

Don’t give up yet. Stage 4 is not death sentence! My husband has been stage 4 for almost 22 months and as of his last scan, he is NED. 4 surgeries (small bowel resection, thoracotomy, craniotomy, and gamma knife), one round of Yervoy and 12 months of Zelboraf got him to where he is. Try to take it day at a time. Our theory is that each day that he is alive, is one day closer to the next medication getting approved. As his oncologist told him at diagnosis, if you have to have melanoma, now is a very good time to have it…there are options. Make sure to have the biopsy checked for the BRaf mutation…Zelboraf has been a miracle drug for my husband. You might also look into Pd-1 trials if Yervoy doesn’t work. Keep in mind that Yervoy can take time…up to 6 months to work.

I can't speak to your future treatment, but I can address health care workers' predictive abilities….they stink.  I was told (over the phone at work) that my cancer was terminal.  That was 6 years ago and every now and then I call that poorly trained PA  and say "Hi, I'm still heeeerrrrrre".

Explore options, do your research, console your husband, but don't automatically assume others have crystal balls.

I can't speak to your future treatment, but I can address health care workers' predictive abilities….they stink.  I was told (over the phone at work) that my cancer was terminal.  That was 6 years ago and every now and then I call that poorly trained PA  and say "Hi, I'm still heeeerrrrrre".

Explore options, do your research, console your husband, but don't automatically assume others have crystal balls.

I can't speak to your future treatment, but I can address health care workers' predictive abilities….they stink.  I was told (over the phone at work) that my cancer was terminal.  That was 6 years ago and every now and then I call that poorly trained PA  and say "Hi, I'm still heeeerrrrrre".

Explore options, do your research, console your husband, but don't automatically assume others have crystal balls.

Hi,
Just wondering if it has been confined to your leg. My husband has modular mm stage 3 and 3 recurrences all in his left leg. In may he had a limb perfusion since then NED. Another pet scheduled in 3 weeks. We go to mayo in Rochester.

Hi,
Just wondering if it has been confined to your leg. My husband has modular mm stage 3 and 3 recurrences all in his left leg. In may he had a limb perfusion since then NED. Another pet scheduled in 3 weeks. We go to mayo in Rochester.

Hi,
Just wondering if it has been confined to your leg. My husband has modular mm stage 3 and 3 recurrences all in his left leg. In may he had a limb perfusion since then NED. Another pet scheduled in 3 weeks. We go to mayo in Rochester.

So sorry its back. Good luck with Yervoy.  My husband recently began the same treatment…just had his 2nd infusion.  So far no real side effects.  I am curious about the bumps going up your leg.  My husband has a bumpy rash on his shins.  This began just before his treatment began so we don't associate it with the Yervoy.  Were you told why this occurred?    All good thoughts your way and looking to positive yervoy treatments.

So sorry its back. Good luck with Yervoy.  My husband recently began the same treatment…just had his 2nd infusion.  So far no real side effects.  I am curious about the bumps going up your leg.  My husband has a bumpy rash on his shins.  This began just before his treatment began so we don't associate it with the Yervoy.  Were you told why this occurred?    All good thoughts your way and looking to positive yervoy treatments.

So sorry its back. Good luck with Yervoy.  My husband recently began the same treatment…just had his 2nd infusion.  So far no real side effects.  I am curious about the bumps going up your leg.  My husband has a bumpy rash on his shins.  This began just before his treatment began so we don't associate it with the Yervoy.  Were you told why this occurred?    All good thoughts your way and looking to positive yervoy treatments.

hi love,

I write on behalf of my husband Kevin who became an angel not too long ago. And i just want to say that your are a beautiful person, and your strength is an inspiration to everyone on here.

The doctors may have said "get your affairs in order",  but "it aint over till the fat lady sings baby", an even when she does, whether its a week or 20 years from now, im confident that the journey you'll go on after this one will be divine.

But until then, love your loved ones fiercely, and keep a smile on your face and be proud that you will come out as the true winner in the end.

It's not about beating the cancer, It's about not letting the cancer beat you 🙂

Sending you plenty of healing love vibes.

 

 

-himynameisbrenda

wife of

himynameiskevin

hi love,

I write on behalf of my husband Kevin who became an angel not too long ago. And i just want to say that your are a beautiful person, and your strength is an inspiration to everyone on here.

The doctors may have said "get your affairs in order",  but "it aint over till the fat lady sings baby", an even when she does, whether its a week or 20 years from now, im confident that the journey you'll go on after this one will be divine.

But until then, love your loved ones fiercely, and keep a smile on your face and be proud that you will come out as the true winner in the end.

It's not about beating the cancer, It's about not letting the cancer beat you 🙂

Sending you plenty of healing love vibes.

 

 

-himynameisbrenda

wife of

himynameiskevin

hi love,

I write on behalf of my husband Kevin who became an angel not too long ago. And i just want to say that your are a beautiful person, and your strength is an inspiration to everyone on here.

The doctors may have said "get your affairs in order",  but "it aint over till the fat lady sings baby", an even when she does, whether its a week or 20 years from now, im confident that the journey you'll go on after this one will be divine.

But until then, love your loved ones fiercely, and keep a smile on your face and be proud that you will come out as the true winner in the end.

It's not about beating the cancer, It's about not letting the cancer beat you 🙂

Sending you plenty of healing love vibes.

 

 

-himynameisbrenda

wife of

himynameiskevin

Yep, I was told to get my affairs in order in Feb 2007.   (Innumerable lung tumors.) Just wish my wife would learn what she would need to survive without me, she won't even try to learn.   Guess what that does to my emotional state?

   I tried IL-2 with one of the world's most experienced IL-2 Oncologists for 20 months at UVA before the holding pattern ended and I developed innumerable new lung tumors, a neck tumor and a new groin tumor, as well as rpid growth of the older innumerable lung tumors – Jan/Feb 2009.  (My liver tujmjors never strted growing again fter the IL-2 stopped their growth. 

   I learned of the one peer reviewed article published by one Oncologist on one patient, and also spoke with Dr.  Wen Jen Hwu from MDA.  I learned that my aften mucousal melanoma and Acral Lentiginous Melanoma both often have either or both the c-kit over-amplication and one of the C-kit DNA mutations.  At that time Gleevec was the FDA approved drug for GIST, CML and some lymphoma's (which also often have c-kit over-amplications and/or C-kit mutations.  My Oncologist researched what I presented to him and the melanoma team at UVA, for the first time put a c-kit melanoma patient (me) on Gleevec.  Within 30 days all my old and new innumerable tumors stopped their rapid growth and had stabilized!  Since then studies hve shown that Gleevec and it's 4 or so successors often have a positive effect at controling some of the different c-kit melanoma's.

   The first of the c-kit tests can be conductedd at any local lab to see if the c-kit amplification factor is present.  If it is present then tumor material should be sent to a specialized lab to test for whether it contains one of the c-kit  DNA mutations and which one.  Different Targeted drugs may make a difference based on which C-kit mutation one has. 

Get at least the initial c-kit amplifiction test.

 

PS, I not only have received a couple of new grandchildren, but also am now a Great-Grandfather.  Long after I was supposed to have been gone!  My Grand children asked me how come the latest is GREAT Grandchild while they are only grandchildren!

Yep, I was told to get my affairs in order in Feb 2007.   (Innumerable lung tumors.) Just wish my wife would learn what she would need to survive without me, she won't even try to learn.   Guess what that does to my emotional state?

   I tried IL-2 with one of the world's most experienced IL-2 Oncologists for 20 months at UVA before the holding pattern ended and I developed innumerable new lung tumors, a neck tumor and a new groin tumor, as well as rpid growth of the older innumerable lung tumors – Jan/Feb 2009.  (My liver tujmjors never strted growing again fter the IL-2 stopped their growth. 

   I learned of the one peer reviewed article published by one Oncologist on one patient, and also spoke with Dr.  Wen Jen Hwu from MDA.  I learned that my aften mucousal melanoma and Acral Lentiginous Melanoma both often have either or both the c-kit over-amplication and one of the C-kit DNA mutations.  At that time Gleevec was the FDA approved drug for GIST, CML and some lymphoma's (which also often have c-kit over-amplications and/or C-kit mutations.  My Oncologist researched what I presented to him and the melanoma team at UVA, for the first time put a c-kit melanoma patient (me) on Gleevec.  Within 30 days all my old and new innumerable tumors stopped their rapid growth and had stabilized!  Since then studies hve shown that Gleevec and it's 4 or so successors often have a positive effect at controling some of the different c-kit melanoma's.

   The first of the c-kit tests can be conductedd at any local lab to see if the c-kit amplification factor is present.  If it is present then tumor material should be sent to a specialized lab to test for whether it contains one of the c-kit  DNA mutations and which one.  Different Targeted drugs may make a difference based on which C-kit mutation one has. 

Get at least the initial c-kit amplifiction test.

 

PS, I not only have received a couple of new grandchildren, but also am now a Great-Grandfather.  Long after I was supposed to have been gone!  My Grand children asked me how come the latest is GREAT Grandchild while they are only grandchildren!

Yep, I was told to get my affairs in order in Feb 2007.   (Innumerable lung tumors.) Just wish my wife would learn what she would need to survive without me, she won't even try to learn.   Guess what that does to my emotional state?

   I tried IL-2 with one of the world's most experienced IL-2 Oncologists for 20 months at UVA before the holding pattern ended and I developed innumerable new lung tumors, a neck tumor and a new groin tumor, as well as rpid growth of the older innumerable lung tumors – Jan/Feb 2009.  (My liver tujmjors never strted growing again fter the IL-2 stopped their growth. 

   I learned of the one peer reviewed article published by one Oncologist on one patient, and also spoke with Dr.  Wen Jen Hwu from MDA.  I learned that my aften mucousal melanoma and Acral Lentiginous Melanoma both often have either or both the c-kit over-amplication and one of the C-kit DNA mutations.  At that time Gleevec was the FDA approved drug for GIST, CML and some lymphoma's (which also often have c-kit over-amplications and/or C-kit mutations.  My Oncologist researched what I presented to him and the melanoma team at UVA, for the first time put a c-kit melanoma patient (me) on Gleevec.  Within 30 days all my old and new innumerable tumors stopped their rapid growth and had stabilized!  Since then studies hve shown that Gleevec and it's 4 or so successors often have a positive effect at controling some of the different c-kit melanoma's.

   The first of the c-kit tests can be conductedd at any local lab to see if the c-kit amplification factor is present.  If it is present then tumor material should be sent to a specialized lab to test for whether it contains one of the c-kit  DNA mutations and which one.  Different Targeted drugs may make a difference based on which C-kit mutation one has. 

Get at least the initial c-kit amplifiction test.

 

PS, I not only have received a couple of new grandchildren, but also am now a Great-Grandfather.  Long after I was supposed to have been gone!  My Grand children asked me how come the latest is GREAT Grandchild while they are only grandchildren!

Share with everyone else in your bad news.Praying that the Yervoy does what it is supposed to do.Know that we are all pulling for you.just reading these posts in a small way have a healing power.Beat the Beast.  Al

Share with everyone else in your bad news.Praying that the Yervoy does what it is supposed to do.Know that we are all pulling for you.just reading these posts in a small way have a healing power.Beat the Beast.  Al

Share with everyone else in your bad news.Praying that the Yervoy does what it is supposed to do.Know that we are all pulling for you.just reading these posts in a small way have a healing power.Beat the Beast.  Al