Do people survive this?

Hi Gaby,

There's always hope.

Weeks after my husband had a tumor out that had wrapped around his spinal cord, we were on a plane (a flight we shouldn't have been on actually).

I sat between my husband and another man. A man who shared with me five minutes into the flight that he was a two-time cancer survivor. The first time he says was 30 YEARS AGO … I wanted to ask but didn't think it was right to ask what kind of cancer – and then he says, "It was melanoma." I wasn't supposed to live this long." He then had a round with prostate cancer.

Did I feel that that man entered our lives for a reason?

Yes, to say there's hope. 

Today as we are waiting for my husband's test to see if a spot that lit up on his PET scan is a return of melanoma or something less sinister – I still sit here hopeful.

This can be a long journey with many ups and downs.

Be strong and hang in there – and never give up hope.

My best to you and your husband.

Kimberly

Hi Gaby,

There's always hope.

Weeks after my husband had a tumor out that had wrapped around his spinal cord, we were on a plane (a flight we shouldn't have been on actually).

I sat between my husband and another man. A man who shared with me five minutes into the flight that he was a two-time cancer survivor. The first time he says was 30 YEARS AGO … I wanted to ask but didn't think it was right to ask what kind of cancer – and then he says, "It was melanoma." I wasn't supposed to live this long." He then had a round with prostate cancer.

Did I feel that that man entered our lives for a reason?

Yes, to say there's hope. 

Today as we are waiting for my husband's test to see if a spot that lit up on his PET scan is a return of melanoma or something less sinister – I still sit here hopeful.

This can be a long journey with many ups and downs.

Be strong and hang in there – and never give up hope.

My best to you and your husband.

Kimberly

Hi Gaby,

There's always hope.

Weeks after my husband had a tumor out that had wrapped around his spinal cord, we were on a plane (a flight we shouldn't have been on actually).

I sat between my husband and another man. A man who shared with me five minutes into the flight that he was a two-time cancer survivor. The first time he says was 30 YEARS AGO … I wanted to ask but didn't think it was right to ask what kind of cancer – and then he says, "It was melanoma." I wasn't supposed to live this long." He then had a round with prostate cancer.

Did I feel that that man entered our lives for a reason?

Yes, to say there's hope. 

Today as we are waiting for my husband's test to see if a spot that lit up on his PET scan is a return of melanoma or something less sinister – I still sit here hopeful.

This can be a long journey with many ups and downs.

Be strong and hang in there – and never give up hope.

My best to you and your husband.

Kimberly

Gaby have you considered a plant-based diet?  I recently saw a documentary about in which a large melanoma tumor shrunk away to nothing with the vegan diet and no other treatment.

Gaby have you considered a plant-based diet?  I recently saw a documentary about in which a large melanoma tumor shrunk away to nothing with the vegan diet and no other treatment.

Gaby have you considered a plant-based diet?  I recently saw a documentary about in which a large melanoma tumor shrunk away to nothing with the vegan diet and no other treatment.

Gaby, I am so sorry that you and your husband have to go through this. The whole melanoma thing is just so stressful and uncertain and it is very hard to live with. 

The problem is that we consumers are used to dealing with medical problems that can be cured. Even if someone is very, very sick, most of the time our doctors can do something to make it better. Whether it be antibiotics or heart bypass surgery, a liver transplant or even some types of cancer– somebody can do something to make it better, especially with a young patient. 

But with melanoma, there is no cure yet.  

The situation with melanoma now is that you try something and hope that it works. If it does work, you stick with it as long as possible– many months, sometimes several years. When it stops working– when the tumors start to grow again– you try another treatment and hope that works for a long, long time. And you continue this way for as long as possible. More and more people are experiencing long-term success with the new treatments. As time goes by, we may learn that their melanoma never recurred so they are "cured". But it will take several more years before we start to get that data.

It is very unfortunate but very true that living with melanoma is now your "new normal". You and your husband will probably be dealing with side effects of various treatments for a long time. You will become concerned about every ache and pain and bump wondering if it means that a new tumor has popped up someplace. You will start to get anxious weeks before every scheduled scan worrying that it will reveal that your treatment is not working and losing sleep at night wondering what treatment you should try next if the scan results are disappointing. 

The way that people seem to deal with this is to consciously cultivate a "positive mental attitude". You talk to your doctors and do your own resarch (like here on the MPIP forum) and choose the treatment that you think is the best available option for you. Once you have made your choice, believe whole-heartedly that it will work. If you are a religous person, prayer is very helpful. Read the posts here from people who have had long-term success with that treatment and believe that you will have the same results. And then try to put the anxiety out of your mind and live your life as joyfully as possible.

If the treatment doesn't work or if it works for a while and then stops working, never never second guess yourself that you made the wrong choice. Nobody knows which treatment will work for which patient– not even the doctors. All any of us can do is make the best decision we can with the information we have at the time and never look back. Just pull yourself together and find the next promising new treatment that you would like to try. And there are many, many new melanoma treatments available now with more in the clinical trial pipeline. 

Nobody can make you feel better; nobody can make your anxiety go away. But if you can manage to accept that this is what you're going to have to deal with for a while and hold onto your belief that you WILL beat melanoma, you can have a lot of joy and a lot of love in  your life even while living with melanoma. 

Gaby, I am so sorry that you and your husband have to go through this. The whole melanoma thing is just so stressful and uncertain and it is very hard to live with. 

The problem is that we consumers are used to dealing with medical problems that can be cured. Even if someone is very, very sick, most of the time our doctors can do something to make it better. Whether it be antibiotics or heart bypass surgery, a liver transplant or even some types of cancer– somebody can do something to make it better, especially with a young patient. 

But with melanoma, there is no cure yet.  

The situation with melanoma now is that you try something and hope that it works. If it does work, you stick with it as long as possible– many months, sometimes several years. When it stops working– when the tumors start to grow again– you try another treatment and hope that works for a long, long time. And you continue this way for as long as possible. More and more people are experiencing long-term success with the new treatments. As time goes by, we may learn that their melanoma never recurred so they are "cured". But it will take several more years before we start to get that data.

It is very unfortunate but very true that living with melanoma is now your "new normal". You and your husband will probably be dealing with side effects of various treatments for a long time. You will become concerned about every ache and pain and bump wondering if it means that a new tumor has popped up someplace. You will start to get anxious weeks before every scheduled scan worrying that it will reveal that your treatment is not working and losing sleep at night wondering what treatment you should try next if the scan results are disappointing. 

The way that people seem to deal with this is to consciously cultivate a "positive mental attitude". You talk to your doctors and do your own resarch (like here on the MPIP forum) and choose the treatment that you think is the best available option for you. Once you have made your choice, believe whole-heartedly that it will work. If you are a religous person, prayer is very helpful. Read the posts here from people who have had long-term success with that treatment and believe that you will have the same results. And then try to put the anxiety out of your mind and live your life as joyfully as possible.

If the treatment doesn't work or if it works for a while and then stops working, never never second guess yourself that you made the wrong choice. Nobody knows which treatment will work for which patient– not even the doctors. All any of us can do is make the best decision we can with the information we have at the time and never look back. Just pull yourself together and find the next promising new treatment that you would like to try. And there are many, many new melanoma treatments available now with more in the clinical trial pipeline. 

Nobody can make you feel better; nobody can make your anxiety go away. But if you can manage to accept that this is what you're going to have to deal with for a while and hold onto your belief that you WILL beat melanoma, you can have a lot of joy and a lot of love in  your life even while living with melanoma. 

Gaby, I am so sorry that you and your husband have to go through this. The whole melanoma thing is just so stressful and uncertain and it is very hard to live with. 

The problem is that we consumers are used to dealing with medical problems that can be cured. Even if someone is very, very sick, most of the time our doctors can do something to make it better. Whether it be antibiotics or heart bypass surgery, a liver transplant or even some types of cancer– somebody can do something to make it better, especially with a young patient. 

But with melanoma, there is no cure yet.  

The situation with melanoma now is that you try something and hope that it works. If it does work, you stick with it as long as possible– many months, sometimes several years. When it stops working– when the tumors start to grow again– you try another treatment and hope that works for a long, long time. And you continue this way for as long as possible. More and more people are experiencing long-term success with the new treatments. As time goes by, we may learn that their melanoma never recurred so they are "cured". But it will take several more years before we start to get that data.

It is very unfortunate but very true that living with melanoma is now your "new normal". You and your husband will probably be dealing with side effects of various treatments for a long time. You will become concerned about every ache and pain and bump wondering if it means that a new tumor has popped up someplace. You will start to get anxious weeks before every scheduled scan worrying that it will reveal that your treatment is not working and losing sleep at night wondering what treatment you should try next if the scan results are disappointing. 

The way that people seem to deal with this is to consciously cultivate a "positive mental attitude". You talk to your doctors and do your own resarch (like here on the MPIP forum) and choose the treatment that you think is the best available option for you. Once you have made your choice, believe whole-heartedly that it will work. If you are a religous person, prayer is very helpful. Read the posts here from people who have had long-term success with that treatment and believe that you will have the same results. And then try to put the anxiety out of your mind and live your life as joyfully as possible.

If the treatment doesn't work or if it works for a while and then stops working, never never second guess yourself that you made the wrong choice. Nobody knows which treatment will work for which patient– not even the doctors. All any of us can do is make the best decision we can with the information we have at the time and never look back. Just pull yourself together and find the next promising new treatment that you would like to try. And there are many, many new melanoma treatments available now with more in the clinical trial pipeline. 

Nobody can make you feel better; nobody can make your anxiety go away. But if you can manage to accept that this is what you're going to have to deal with for a while and hold onto your belief that you WILL beat melanoma, you can have a lot of joy and a lot of love in  your life even while living with melanoma. 

Gaby – I'm so sorry for what you are going through.  The advice from POW & HopefulOne is spot-on.  There is ALWAYS hope. Remember that you are not alone – most of us that read and contribute to this forum know exactly what you are feeling.  Like POW stated, this is your new normal, and for your sake as well as your husband's, a Positive Mental Attitude is key. What helps me (and what I feel I can control) is to educate myself as much as possible about melanoma, keep my husband as healthy as possible, and to be as prepared as possible for whatever may come. I try to keep myself busy and keep my family's life as 'normal' as possible. Is it difficult sometimes? Absolutely! But I consider the alternatives and I'm of no use to anyone if I can't function at a healthy level. At one point last year I was inconsolable & in a catatonic state for 3 days. I saw what it was doing my husband, my kids and my life and I knew I had to somehow snap out of it. It's not easy living with this beast hanging over your head, but if you can find ways of coping (seeing a psychologist, yoga, meditation, etc.), you will be able to enjoy life without letting melanoma take over your life.

Have Faith and Beat the Beast!

Julie

Gaby – I'm so sorry for what you are going through.  The advice from POW & HopefulOne is spot-on.  There is ALWAYS hope. Remember that you are not alone – most of us that read and contribute to this forum know exactly what you are feeling.  Like POW stated, this is your new normal, and for your sake as well as your husband's, a Positive Mental Attitude is key. What helps me (and what I feel I can control) is to educate myself as much as possible about melanoma, keep my husband as healthy as possible, and to be as prepared as possible for whatever may come. I try to keep myself busy and keep my family's life as 'normal' as possible. Is it difficult sometimes? Absolutely! But I consider the alternatives and I'm of no use to anyone if I can't function at a healthy level. At one point last year I was inconsolable & in a catatonic state for 3 days. I saw what it was doing my husband, my kids and my life and I knew I had to somehow snap out of it. It's not easy living with this beast hanging over your head, but if you can find ways of coping (seeing a psychologist, yoga, meditation, etc.), you will be able to enjoy life without letting melanoma take over your life.

Have Faith and Beat the Beast!

Julie

Gaby – I'm so sorry for what you are going through.  The advice from POW & HopefulOne is spot-on.  There is ALWAYS hope. Remember that you are not alone – most of us that read and contribute to this forum know exactly what you are feeling.  Like POW stated, this is your new normal, and for your sake as well as your husband's, a Positive Mental Attitude is key. What helps me (and what I feel I can control) is to educate myself as much as possible about melanoma, keep my husband as healthy as possible, and to be as prepared as possible for whatever may come. I try to keep myself busy and keep my family's life as 'normal' as possible. Is it difficult sometimes? Absolutely! But I consider the alternatives and I'm of no use to anyone if I can't function at a healthy level. At one point last year I was inconsolable & in a catatonic state for 3 days. I saw what it was doing my husband, my kids and my life and I knew I had to somehow snap out of it. It's not easy living with this beast hanging over your head, but if you can find ways of coping (seeing a psychologist, yoga, meditation, etc.), you will be able to enjoy life without letting melanoma take over your life.

Have Faith and Beat the Beast!

Julie

From what I have read, Melanoma CAN be cured in the later stages.  Not for a high percentage of people, but for some.  Even at stage 4.  50% of stage  3 a and b people are alive at 10 years.  Also, Melanoma can regress on its own, though very rare, it has happened.  There have been cures with TIL and IL2 for 5 or 6 percent of the people who take it from the studies I have read.  Europe has a study going in relation to Yervoy or Ipi responders.  About 17 percent of people treated with Ipi were alive  at 7 years and those who were alive at that 7 year point were alive at ten years.  If you are alive at ten years and taking no treatment, then that's a cure in my book. So yes, there is hope.  Best wishes to you and your husband. 

From what I have read, Melanoma CAN be cured in the later stages.  Not for a high percentage of people, but for some.  Even at stage 4.  50% of stage  3 a and b people are alive at 10 years.  Also, Melanoma can regress on its own, though very rare, it has happened.  There have been cures with TIL and IL2 for 5 or 6 percent of the people who take it from the studies I have read.  Europe has a study going in relation to Yervoy or Ipi responders.  About 17 percent of people treated with Ipi were alive  at 7 years and those who were alive at that 7 year point were alive at ten years.  If you are alive at ten years and taking no treatment, then that's a cure in my book. So yes, there is hope.  Best wishes to you and your husband. 

From what I have read, Melanoma CAN be cured in the later stages.  Not for a high percentage of people, but for some.  Even at stage 4.  50% of stage  3 a and b people are alive at 10 years.  Also, Melanoma can regress on its own, though very rare, it has happened.  There have been cures with TIL and IL2 for 5 or 6 percent of the people who take it from the studies I have read.  Europe has a study going in relation to Yervoy or Ipi responders.  About 17 percent of people treated with Ipi were alive  at 7 years and those who were alive at that 7 year point were alive at ten years.  If you are alive at ten years and taking no treatment, then that's a cure in my book. So yes, there is hope.  Best wishes to you and your husband. 

Hi Gaby, I m sorry for this gut-wrenching experience for you and your husband. A short answer to your title "..yes, people do survive this." As you will see on this board, there are people here who have been living with a stg IV diagnosis for some years. I was initially diagnosed in 2002, and progressed to stg IV in 2005. I have had many many moments of living in that time period! I thank God for each day, as I know they are a gift from Him. Treatments are advancing rapidly, and even though this is not an easy journey, there is hope. Hang in there and take one step at a time. Use those on here as a sounding board and place of experience and combined knowledge and support.

So so sorry you are here!

Tina

Hi Gaby, I m sorry for this gut-wrenching experience for you and your husband. A short answer to your title "..yes, people do survive this." As you will see on this board, there are people here who have been living with a stg IV diagnosis for some years. I was initially diagnosed in 2002, and progressed to stg IV in 2005. I have had many many moments of living in that time period! I thank God for each day, as I know they are a gift from Him. Treatments are advancing rapidly, and even though this is not an easy journey, there is hope. Hang in there and take one step at a time. Use those on here as a sounding board and place of experience and combined knowledge and support.

So so sorry you are here!

Tina

Hi Gaby, I m sorry for this gut-wrenching experience for you and your husband. A short answer to your title "..yes, people do survive this." As you will see on this board, there are people here who have been living with a stg IV diagnosis for some years. I was initially diagnosed in 2002, and progressed to stg IV in 2005. I have had many many moments of living in that time period! I thank God for each day, as I know they are a gift from Him. Treatments are advancing rapidly, and even though this is not an easy journey, there is hope. Hang in there and take one step at a time. Use those on here as a sounding board and place of experience and combined knowledge and support.

So so sorry you are here!

Tina

Hey Gaby,

So sorry for the hurt I can feel in your words.  But, I am in a league with Mom/RN and Tina.  Firstly, we are actually living with melanoma…some folks who wax poetic about what it's like to live it….do NOT!  Anyhow, from just that arbitrary point alone…I am entering my second decade as a Stage IV melanoma….patient? survivor? endurer? wrangler? fighter?  I don't know.  Call me what you like.  I am a mom, sister, lover, friend.  I am a reader and writer.  A caregiver to children.  A lover of good food, good friends, travel and adventure.   And yes, I have melanoma.  I have worked full time through the ten years of my diagnosis except for about 5 months where I had to be zapped and surgically scarred, etc.  I still run and work out.  I still worry about bills and home repairs.  Just had to deal with some septic tank issues.  Melanoma doesn't spare you that!!!  But, I am also here.  VERY here.  As are your husband and TIna and Mom.  It is not always easy.  In fact, sometimes it is extremely hard.  Hard to endure and hard to watch your loved ones endure.  But….we are here.  And, so are you.

But, even better.  I have data!!!  Melanoma world is different now.  It is not perfect.  It is not easy.  And many, many of my dear ones….met on this strange journey I have been on are no longer here with me.  But, Mom is right…there are some DURABLE cures these days.  Here's what the big dogs of melanoma world are saying:

Sznol:  ...for our own patients and for some of the patients treated in the phase 2 trials, we have had follow-up going beyond 5, 6, or 7 years that shows no evidence of relapse.  You can actually start using the word cure for some of these patients.

See the whole interview of Sznol by Weber from my blog post on Nov 25, 2012.

Hodi:  Regarding some patients treated with ipi (Yervoy) "…these results are consistent with our findings from randomized trials and confirm the durability of the plateau in overall survival, previously shown to extend to 5 years but now shown to extend up to 10 years."

See the whole report on my blog post:   Melanoma patients…alive and kicking 10 years after ipi! , from November 3, 2013.

And there's much, much more data out there.  Do not despair.  LIVE LIFE LARGE!  You have the chance to fully realize how precious it really is.  For those who ask when I am going to die…I steal a line and say, "Not today!"

It gets better, I promise.  Besides, I know lots of folks with no nasty diagnosis hanging over their head who never really live at all…even if they live to be 99.  It's a choice.  Hang in there.  Celeste

Hey Gaby,

So sorry for the hurt I can feel in your words.  But, I am in a league with Mom/RN and Tina.  Firstly, we are actually living with melanoma…some folks who wax poetic about what it's like to live it….do NOT!  Anyhow, from just that arbitrary point alone…I am entering my second decade as a Stage IV melanoma….patient? survivor? endurer? wrangler? fighter?  I don't know.  Call me what you like.  I am a mom, sister, lover, friend.  I am a reader and writer.  A caregiver to children.  A lover of good food, good friends, travel and adventure.   And yes, I have melanoma.  I have worked full time through the ten years of my diagnosis except for about 5 months where I had to be zapped and surgically scarred, etc.  I still run and work out.  I still worry about bills and home repairs.  Just had to deal with some septic tank issues.  Melanoma doesn't spare you that!!!  But, I am also here.  VERY here.  As are your husband and TIna and Mom.  It is not always easy.  In fact, sometimes it is extremely hard.  Hard to endure and hard to watch your loved ones endure.  But….we are here.  And, so are you.

But, even better.  I have data!!!  Melanoma world is different now.  It is not perfect.  It is not easy.  And many, many of my dear ones….met on this strange journey I have been on are no longer here with me.  But, Mom is right…there are some DURABLE cures these days.  Here's what the big dogs of melanoma world are saying:

Sznol:  ...for our own patients and for some of the patients treated in the phase 2 trials, we have had follow-up going beyond 5, 6, or 7 years that shows no evidence of relapse.  You can actually start using the word cure for some of these patients.

See the whole interview of Sznol by Weber from my blog post on Nov 25, 2012.

Hodi:  Regarding some patients treated with ipi (Yervoy) "…these results are consistent with our findings from randomized trials and confirm the durability of the plateau in overall survival, previously shown to extend to 5 years but now shown to extend up to 10 years."

See the whole report on my blog post:   Melanoma patients…alive and kicking 10 years after ipi! , from November 3, 2013.

And there's much, much more data out there.  Do not despair.  LIVE LIFE LARGE!  You have the chance to fully realize how precious it really is.  For those who ask when I am going to die…I steal a line and say, "Not today!"

It gets better, I promise.  Besides, I know lots of folks with no nasty diagnosis hanging over their head who never really live at all…even if they live to be 99.  It's a choice.  Hang in there.  Celeste

Hey Gaby,

So sorry for the hurt I can feel in your words.  But, I am in a league with Mom/RN and Tina.  Firstly, we are actually living with melanoma…some folks who wax poetic about what it's like to live it….do NOT!  Anyhow, from just that arbitrary point alone…I am entering my second decade as a Stage IV melanoma….patient? survivor? endurer? wrangler? fighter?  I don't know.  Call me what you like.  I am a mom, sister, lover, friend.  I am a reader and writer.  A caregiver to children.  A lover of good food, good friends, travel and adventure.   And yes, I have melanoma.  I have worked full time through the ten years of my diagnosis except for about 5 months where I had to be zapped and surgically scarred, etc.  I still run and work out.  I still worry about bills and home repairs.  Just had to deal with some septic tank issues.  Melanoma doesn't spare you that!!!  But, I am also here.  VERY here.  As are your husband and TIna and Mom.  It is not always easy.  In fact, sometimes it is extremely hard.  Hard to endure and hard to watch your loved ones endure.  But….we are here.  And, so are you.

But, even better.  I have data!!!  Melanoma world is different now.  It is not perfect.  It is not easy.  And many, many of my dear ones….met on this strange journey I have been on are no longer here with me.  But, Mom is right…there are some DURABLE cures these days.  Here's what the big dogs of melanoma world are saying:

Sznol:  ...for our own patients and for some of the patients treated in the phase 2 trials, we have had follow-up going beyond 5, 6, or 7 years that shows no evidence of relapse.  You can actually start using the word cure for some of these patients.

See the whole interview of Sznol by Weber from my blog post on Nov 25, 2012.

Hodi:  Regarding some patients treated with ipi (Yervoy) "…these results are consistent with our findings from randomized trials and confirm the durability of the plateau in overall survival, previously shown to extend to 5 years but now shown to extend up to 10 years."

See the whole report on my blog post:   Melanoma patients…alive and kicking 10 years after ipi! , from November 3, 2013.

And there's much, much more data out there.  Do not despair.  LIVE LIFE LARGE!  You have the chance to fully realize how precious it really is.  For those who ask when I am going to die…I steal a line and say, "Not today!"

It gets better, I promise.  Besides, I know lots of folks with no nasty diagnosis hanging over their head who never really live at all…even if they live to be 99.  It's a choice.  Hang in there.  Celeste