› Forums › General Melanoma Community › Stage IV – Not taking treatment – What to expect?
- This topic has 36 replies, 8 voices, and was last updated 10 years, 4 months ago by
Squash.
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- April 12, 2015 at 3:24 am
My dad was diagnosed with melanoma last summer (originally diagnosed as Stage 2b but Breslow scale 5). His primary tumor on his trunk was removed in May. In October it was discovered it had spread to nearby lymph nodes and a baseball sized lymph node full of cancer was removed. The radiation oncologist strongly encouraged radiation (which I tried to discourage my dad from taking). In December he started 30 sessions of radiation. CT scans after radiation showed the cancer had spread to both lungs (at least 10 spots).
Dad is 73 and has less than a healthy heart and lungs before the cancer had metastasized to his lungs and several other issues common with aging. Because of the side effects of treatment and the low success rate, he has opted not to take treatments. He could change his mind but would have to before the cancer burden was too high on his body.
Recently he has feeling good and had returned to normal activities. He's still pretty active and enjoys outdoor activities, wood working, etc. But, most of this week he has felt nauseous and has slept a lot during the day. This is very unusual for him. So, at this point, I would like to think it's just some bug he's picked up but can't help but wonder if it's the cancer making him sick. I will call the nurse on Monday to get her input but I also would appreciate if others would share their knowledge. I live a few hours away from my dad so I know a time will come when I will have to spend a lot more time taking care of him but with a full time job, my own family, the unknown is tough. So, if anyone has a family member that has gone through something similar as my dad, I would appreciate the candid feedback.
Thank you.
Melissa
- Replies
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- April 12, 2015 at 4:15 am
I assume he was seeing a melanoma specialist. It really is aggravating but I imagine he wasn't stage 4 until it went to his lungs. At the near lymph node he was probably 3.until a recent trial of either yervoy or pd1 there wasn't much that great for stage 3. It sounds like the docs were hoping with the surgery followed by the radiation they could hope to keep it from spreading. That effort is probably why he is still fairly ok.
Now that he's stage 4 if your dad wants to live he needs the stage 4 meds. He needs tested for the braf mutation. If that comes back positive he can take the tafinlar mekenist combo pills. If negative or if the docs prefer he can start the immunotherapy iv med of 4 doses called yervoy. If that doesn't work there are two types of pd1 iv meds. Those are the newer standard treatments and of course there are trials plus the older meds. I'm no doc of course but in my opinion he should start yervoy right away.
With melanoma especially at this stage you need a med or some treatment that works on the entire body. That is what those meds try to do all of which I think have only been around in the last 10 years and less. Without such a med working he will only get worse in my opinion.
I've had the combo pills plus another braf called zelboraf. I've also had yervoy. Now I'm on the keytruda pd1. All within 21 months. Also had 10 zones radiated in that time. Radiation can be very rough but it has helped me but the med that works is the key to surviving this. After 11 months of the meds not working I wouldnt be here except keytruda has worked some. So been on it 10 months so far. Also nutrition is critical especially to rebuild the body after radiation.
Artie
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- April 12, 2015 at 1:53 pm
Artie – thanks for the reply. You are correct and it wasn't stage iv until the lung diagnosis. He does not see a melanoma specialist. I suggested this several months ago but he wasn't interested. He lives in a small town in a rural area and has an hour drive to the closest cancer center. He doesn't want to travel any further than the hour (frustrating for a daughter:(). We lost my mother to colon cancer 6 years ago at the age of 62. LIving through that and seeing that living longer isn't always the right choice (quality vs quantity). My dad was also diagnosed with aggressive prostrate cancer the year my mother passed away. He did radiation for that and has remained clear.
His cancer did test positive for the BRAF gene. The doctor discussed the tafinlar mekenist combo pills as an option. But, she told him they would change his quality of life. And, that a lot of people can't even continue on them due to the side effects. And, then once you fail on those pills, you move to the next option. The doctor was honest with Dad about the side effects which are good but it also has him scared of treatments..especially when he's feeling good.
Thank you for sharing your success story and I'm so glad the treatments are working for you. It seems like the real advances to melanoma over the last few years are so promising. Maybe Dad will decide he wants to fight it but I think he's scared and doesn't want the cancer drugs do to him what happened to my mom.
Thank you,
Melissa
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- April 12, 2015 at 7:08 pm
Yes the chemo stuff can be horrible. The braf combo I was on about 8 weeks. Everyone is different but for me the main side affect was the fevers. Typically about 103 and I didn't even know I had a fever. Towards the end I had 3 bad days of shakes shivers and fever and I threw up twice. So yes those pills can be a little rough but once off them I recovered quickly within a couple days. The first med I was on was zelboraf and for me it was a horrible over 24 side affects. But again once I was off the pills I recovered quickly within a few days.
Yervoy though was easy for me. It actually made me feel better. A super mild rash and a couple times of mild stomach churning was about it. But everyone is different.
PD1 keytruda has been the easiest. For about the first week was a mild fever off and on of about 101 that went away on its own,. A mild rash and some grogginess. After that first week it's only been the mild fever which I haven't even had that in several months so it's like taking nothing. The worse part is having to have an Iv put in every 3 weeks since I didn't get a port put in yet but even that has gotten a lot better. The past several times they get it fine on the first try.
Granted there are risks and side affects to these meds. Some people can have serious issues like colitis and things. But for me that has been my experience. Nothing like the chemo my poor cousins son went through for 30 months who we just laid to his final rest last weekend. He was such a fighter I don't know how he could put up with it. I certainly couldn't so I'm quite glad I can do immunotherapy instead. It's been way easier than chemo from what I've seen.
Artie
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- April 12, 2015 at 7:08 pm
Yes the chemo stuff can be horrible. The braf combo I was on about 8 weeks. Everyone is different but for me the main side affect was the fevers. Typically about 103 and I didn't even know I had a fever. Towards the end I had 3 bad days of shakes shivers and fever and I threw up twice. So yes those pills can be a little rough but once off them I recovered quickly within a couple days. The first med I was on was zelboraf and for me it was a horrible over 24 side affects. But again once I was off the pills I recovered quickly within a few days.
Yervoy though was easy for me. It actually made me feel better. A super mild rash and a couple times of mild stomach churning was about it. But everyone is different.
PD1 keytruda has been the easiest. For about the first week was a mild fever off and on of about 101 that went away on its own,. A mild rash and some grogginess. After that first week it's only been the mild fever which I haven't even had that in several months so it's like taking nothing. The worse part is having to have an Iv put in every 3 weeks since I didn't get a port put in yet but even that has gotten a lot better. The past several times they get it fine on the first try.
Granted there are risks and side affects to these meds. Some people can have serious issues like colitis and things. But for me that has been my experience. Nothing like the chemo my poor cousins son went through for 30 months who we just laid to his final rest last weekend. He was such a fighter I don't know how he could put up with it. I certainly couldn't so I'm quite glad I can do immunotherapy instead. It's been way easier than chemo from what I've seen.
Artie
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- April 12, 2015 at 7:08 pm
Yes the chemo stuff can be horrible. The braf combo I was on about 8 weeks. Everyone is different but for me the main side affect was the fevers. Typically about 103 and I didn't even know I had a fever. Towards the end I had 3 bad days of shakes shivers and fever and I threw up twice. So yes those pills can be a little rough but once off them I recovered quickly within a couple days. The first med I was on was zelboraf and for me it was a horrible over 24 side affects. But again once I was off the pills I recovered quickly within a few days.
Yervoy though was easy for me. It actually made me feel better. A super mild rash and a couple times of mild stomach churning was about it. But everyone is different.
PD1 keytruda has been the easiest. For about the first week was a mild fever off and on of about 101 that went away on its own,. A mild rash and some grogginess. After that first week it's only been the mild fever which I haven't even had that in several months so it's like taking nothing. The worse part is having to have an Iv put in every 3 weeks since I didn't get a port put in yet but even that has gotten a lot better. The past several times they get it fine on the first try.
Granted there are risks and side affects to these meds. Some people can have serious issues like colitis and things. But for me that has been my experience. Nothing like the chemo my poor cousins son went through for 30 months who we just laid to his final rest last weekend. He was such a fighter I don't know how he could put up with it. I certainly couldn't so I'm quite glad I can do immunotherapy instead. It's been way easier than chemo from what I've seen.
Artie
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- April 12, 2015 at 1:53 pm
Artie – thanks for the reply. You are correct and it wasn't stage iv until the lung diagnosis. He does not see a melanoma specialist. I suggested this several months ago but he wasn't interested. He lives in a small town in a rural area and has an hour drive to the closest cancer center. He doesn't want to travel any further than the hour (frustrating for a daughter:(). We lost my mother to colon cancer 6 years ago at the age of 62. LIving through that and seeing that living longer isn't always the right choice (quality vs quantity). My dad was also diagnosed with aggressive prostrate cancer the year my mother passed away. He did radiation for that and has remained clear.
His cancer did test positive for the BRAF gene. The doctor discussed the tafinlar mekenist combo pills as an option. But, she told him they would change his quality of life. And, that a lot of people can't even continue on them due to the side effects. And, then once you fail on those pills, you move to the next option. The doctor was honest with Dad about the side effects which are good but it also has him scared of treatments..especially when he's feeling good.
Thank you for sharing your success story and I'm so glad the treatments are working for you. It seems like the real advances to melanoma over the last few years are so promising. Maybe Dad will decide he wants to fight it but I think he's scared and doesn't want the cancer drugs do to him what happened to my mom.
Thank you,
Melissa
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- April 12, 2015 at 1:53 pm
Artie – thanks for the reply. You are correct and it wasn't stage iv until the lung diagnosis. He does not see a melanoma specialist. I suggested this several months ago but he wasn't interested. He lives in a small town in a rural area and has an hour drive to the closest cancer center. He doesn't want to travel any further than the hour (frustrating for a daughter:(). We lost my mother to colon cancer 6 years ago at the age of 62. LIving through that and seeing that living longer isn't always the right choice (quality vs quantity). My dad was also diagnosed with aggressive prostrate cancer the year my mother passed away. He did radiation for that and has remained clear.
His cancer did test positive for the BRAF gene. The doctor discussed the tafinlar mekenist combo pills as an option. But, she told him they would change his quality of life. And, that a lot of people can't even continue on them due to the side effects. And, then once you fail on those pills, you move to the next option. The doctor was honest with Dad about the side effects which are good but it also has him scared of treatments..especially when he's feeling good.
Thank you for sharing your success story and I'm so glad the treatments are working for you. It seems like the real advances to melanoma over the last few years are so promising. Maybe Dad will decide he wants to fight it but I think he's scared and doesn't want the cancer drugs do to him what happened to my mom.
Thank you,
Melissa
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- April 12, 2015 at 4:15 am
I assume he was seeing a melanoma specialist. It really is aggravating but I imagine he wasn't stage 4 until it went to his lungs. At the near lymph node he was probably 3.until a recent trial of either yervoy or pd1 there wasn't much that great for stage 3. It sounds like the docs were hoping with the surgery followed by the radiation they could hope to keep it from spreading. That effort is probably why he is still fairly ok.
Now that he's stage 4 if your dad wants to live he needs the stage 4 meds. He needs tested for the braf mutation. If that comes back positive he can take the tafinlar mekenist combo pills. If negative or if the docs prefer he can start the immunotherapy iv med of 4 doses called yervoy. If that doesn't work there are two types of pd1 iv meds. Those are the newer standard treatments and of course there are trials plus the older meds. I'm no doc of course but in my opinion he should start yervoy right away.
With melanoma especially at this stage you need a med or some treatment that works on the entire body. That is what those meds try to do all of which I think have only been around in the last 10 years and less. Without such a med working he will only get worse in my opinion.
I've had the combo pills plus another braf called zelboraf. I've also had yervoy. Now I'm on the keytruda pd1. All within 21 months. Also had 10 zones radiated in that time. Radiation can be very rough but it has helped me but the med that works is the key to surviving this. After 11 months of the meds not working I wouldnt be here except keytruda has worked some. So been on it 10 months so far. Also nutrition is critical especially to rebuild the body after radiation.
Artie
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- April 12, 2015 at 4:15 am
I assume he was seeing a melanoma specialist. It really is aggravating but I imagine he wasn't stage 4 until it went to his lungs. At the near lymph node he was probably 3.until a recent trial of either yervoy or pd1 there wasn't much that great for stage 3. It sounds like the docs were hoping with the surgery followed by the radiation they could hope to keep it from spreading. That effort is probably why he is still fairly ok.
Now that he's stage 4 if your dad wants to live he needs the stage 4 meds. He needs tested for the braf mutation. If that comes back positive he can take the tafinlar mekenist combo pills. If negative or if the docs prefer he can start the immunotherapy iv med of 4 doses called yervoy. If that doesn't work there are two types of pd1 iv meds. Those are the newer standard treatments and of course there are trials plus the older meds. I'm no doc of course but in my opinion he should start yervoy right away.
With melanoma especially at this stage you need a med or some treatment that works on the entire body. That is what those meds try to do all of which I think have only been around in the last 10 years and less. Without such a med working he will only get worse in my opinion.
I've had the combo pills plus another braf called zelboraf. I've also had yervoy. Now I'm on the keytruda pd1. All within 21 months. Also had 10 zones radiated in that time. Radiation can be very rough but it has helped me but the med that works is the key to surviving this. After 11 months of the meds not working I wouldnt be here except keytruda has worked some. So been on it 10 months so far. Also nutrition is critical especially to rebuild the body after radiation.
Artie
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- April 12, 2015 at 4:54 am
Artie is absolutely on point. Please make sure your dad is seeing a melanoma specialist. There are things thay may help or actually eradicate your father's disease. Celeste
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- April 12, 2015 at 1:59 pm
Thank you Celeste. I've spent many hours over the last couple of weeks reading the history of your journey with melanoma. You have such a great amount of courage and your story is so inspirational. Congrats on remaining NED for so many years! I've never enjoyed working out or excercising but after reading your story, you've even motivitated me to get moving a bit more:)
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- April 12, 2015 at 3:42 pm
You are sweet to say that! I'm glad you are feeling motivated!!! HA! It is very difficult to help loved ones when they are dealing with melanoma or any other disease process, since ultimately everyone has to make their own decisions about what is right for them. Hang in there. I wish you and your dad my best. C
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- April 12, 2015 at 3:42 pm
You are sweet to say that! I'm glad you are feeling motivated!!! HA! It is very difficult to help loved ones when they are dealing with melanoma or any other disease process, since ultimately everyone has to make their own decisions about what is right for them. Hang in there. I wish you and your dad my best. C
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- April 12, 2015 at 3:42 pm
You are sweet to say that! I'm glad you are feeling motivated!!! HA! It is very difficult to help loved ones when they are dealing with melanoma or any other disease process, since ultimately everyone has to make their own decisions about what is right for them. Hang in there. I wish you and your dad my best. C
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- April 12, 2015 at 1:59 pm
Thank you Celeste. I've spent many hours over the last couple of weeks reading the history of your journey with melanoma. You have such a great amount of courage and your story is so inspirational. Congrats on remaining NED for so many years! I've never enjoyed working out or excercising but after reading your story, you've even motivitated me to get moving a bit more:)
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- April 12, 2015 at 1:59 pm
Thank you Celeste. I've spent many hours over the last couple of weeks reading the history of your journey with melanoma. You have such a great amount of courage and your story is so inspirational. Congrats on remaining NED for so many years! I've never enjoyed working out or excercising but after reading your story, you've even motivitated me to get moving a bit more:)
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- April 12, 2015 at 5:22 am
Why did you discourage him from doing radiation?
Was it because of the sied effects and the possibility that it sreads the cancer quicker and makes the cancer more aggressive?
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- April 12, 2015 at 4:46 pm
Hi Melissa,
im so sorry you're going through this!
One thing you may want to talk with your dad about is hospice. They are ver good at knowing what comes next and how to manage what today brings. Each hospice has their own parameters, but the ones I've seen can be called sooner rather than later. And if your dad recovers, he can go off of it.
Just a thought,
Peace!
julie
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- April 12, 2015 at 4:46 pm
Hi Melissa,
im so sorry you're going through this!
One thing you may want to talk with your dad about is hospice. They are ver good at knowing what comes next and how to manage what today brings. Each hospice has their own parameters, but the ones I've seen can be called sooner rather than later. And if your dad recovers, he can go off of it.
Just a thought,
Peace!
julie
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- April 12, 2015 at 4:46 pm
Hi Melissa,
im so sorry you're going through this!
One thing you may want to talk with your dad about is hospice. They are ver good at knowing what comes next and how to manage what today brings. Each hospice has their own parameters, but the ones I've seen can be called sooner rather than later. And if your dad recovers, he can go off of it.
Just a thought,
Peace!
julie
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- April 19, 2015 at 4:00 pm
I have never heard that radiation can cause the melanoma to spread quicker and become more agressive. My husband had 30 treatments of radiation to his neck and 5 to his brain. He was diagnosed with melanoma and died within 9 months. It just seemed to be so out of control,
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- April 20, 2015 at 3:20 am
Yes in fact according to research radiation can make the cancer 30x more aggressive.
This research was ;published in the Cancer Journal in 2012 and the research was done at UCLA.
So i wouldnt do radiation myself given those risks.
I cant post the link as copy and paste doesnt seem to work.
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- April 20, 2015 at 3:20 am
Yes in fact according to research radiation can make the cancer 30x more aggressive.
This research was ;published in the Cancer Journal in 2012 and the research was done at UCLA.
So i wouldnt do radiation myself given those risks.
I cant post the link as copy and paste doesnt seem to work.
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- April 20, 2015 at 3:20 am
Yes in fact according to research radiation can make the cancer 30x more aggressive.
This research was ;published in the Cancer Journal in 2012 and the research was done at UCLA.
So i wouldnt do radiation myself given those risks.
I cant post the link as copy and paste doesnt seem to work.
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- April 19, 2015 at 4:00 pm
I have never heard that radiation can cause the melanoma to spread quicker and become more agressive. My husband had 30 treatments of radiation to his neck and 5 to his brain. He was diagnosed with melanoma and died within 9 months. It just seemed to be so out of control,
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- April 19, 2015 at 4:00 pm
I have never heard that radiation can cause the melanoma to spread quicker and become more agressive. My husband had 30 treatments of radiation to his neck and 5 to his brain. He was diagnosed with melanoma and died within 9 months. It just seemed to be so out of control,
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- April 13, 2015 at 5:59 am
Does your Dad realize that he can get brain mets? Without treatment he could have the cancer spread to his brain and have dementia like symptoms that progress to Alzheimer's like symptoms… A terrible way to live or die. Would he want this? – This may or may not happen, but something he needs to understand it.
My Mom is Stage IV and is healthier now I think than she was when she treatment in late 2013 and she didn't feel sick then… She was one of the lucky one's that Yervoy works like gangbusters for and she ended up with 25 brain mets… No cognitive issues. Knock on wood… – She did have gamma knife radiation for the brain mets and they think that really helped stimulate her immune system… Synergistic affect.
Getting to a melanoma specialist even for a second opinion on where things stand and options would be a good idea. A local doctor could still provide treatment or he may feel a connection with the specialist. You never know…
If he decides not to get treatment make sure all of his affairs are in order and he decides in advance what medical attention he wants when… My Mom took care of all of this and it was done about 3 weeks after the diagnosis. It makes a big difference during a crisis and after someone dies. – My Dad died many years ago and we were lucky to have had everything done days before he died. It would have been a nightmare if that had not happened.
Good luck.
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- April 13, 2015 at 5:59 am
Does your Dad realize that he can get brain mets? Without treatment he could have the cancer spread to his brain and have dementia like symptoms that progress to Alzheimer's like symptoms… A terrible way to live or die. Would he want this? – This may or may not happen, but something he needs to understand it.
My Mom is Stage IV and is healthier now I think than she was when she treatment in late 2013 and she didn't feel sick then… She was one of the lucky one's that Yervoy works like gangbusters for and she ended up with 25 brain mets… No cognitive issues. Knock on wood… – She did have gamma knife radiation for the brain mets and they think that really helped stimulate her immune system… Synergistic affect.
Getting to a melanoma specialist even for a second opinion on where things stand and options would be a good idea. A local doctor could still provide treatment or he may feel a connection with the specialist. You never know…
If he decides not to get treatment make sure all of his affairs are in order and he decides in advance what medical attention he wants when… My Mom took care of all of this and it was done about 3 weeks after the diagnosis. It makes a big difference during a crisis and after someone dies. – My Dad died many years ago and we were lucky to have had everything done days before he died. It would have been a nightmare if that had not happened.
Good luck.
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- April 13, 2015 at 5:59 am
Does your Dad realize that he can get brain mets? Without treatment he could have the cancer spread to his brain and have dementia like symptoms that progress to Alzheimer's like symptoms… A terrible way to live or die. Would he want this? – This may or may not happen, but something he needs to understand it.
My Mom is Stage IV and is healthier now I think than she was when she treatment in late 2013 and she didn't feel sick then… She was one of the lucky one's that Yervoy works like gangbusters for and she ended up with 25 brain mets… No cognitive issues. Knock on wood… – She did have gamma knife radiation for the brain mets and they think that really helped stimulate her immune system… Synergistic affect.
Getting to a melanoma specialist even for a second opinion on where things stand and options would be a good idea. A local doctor could still provide treatment or he may feel a connection with the specialist. You never know…
If he decides not to get treatment make sure all of his affairs are in order and he decides in advance what medical attention he wants when… My Mom took care of all of this and it was done about 3 weeks after the diagnosis. It makes a big difference during a crisis and after someone dies. – My Dad died many years ago and we were lucky to have had everything done days before he died. It would have been a nightmare if that had not happened.
Good luck.
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- April 15, 2015 at 12:04 am
It's just hard to know how fast things will happen. My Dad was 81 when diagnosed with a stage IIA lesion. He didn't do the SNB so quite possibly could have been stage III at that point. 5 years later, he had a palpable lymph node under his arm. We cherry picked that know it wasn't a cure but hopefully would buy more time. We stopped scanning about that time. My Dad just hated spending all his time at the VA – it took away quality of life. He had other cancers (prostate, lung, thyroid), but it was assumed that the melanoma took him at 89. We know he had intransits on the skin below the lymph basic so knew it had continued to spread. He did radiation treatment for his lung cancer and hormone therapy for the prostate, and both of those seemed to be quiescent in the later stages of his life. I had to fight the establishment thru some of his consults because he chose his own path versus standard protocol. Let your Dad call the shots – it's hard, but it's his choice. l
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- April 15, 2015 at 12:04 am
It's just hard to know how fast things will happen. My Dad was 81 when diagnosed with a stage IIA lesion. He didn't do the SNB so quite possibly could have been stage III at that point. 5 years later, he had a palpable lymph node under his arm. We cherry picked that know it wasn't a cure but hopefully would buy more time. We stopped scanning about that time. My Dad just hated spending all his time at the VA – it took away quality of life. He had other cancers (prostate, lung, thyroid), but it was assumed that the melanoma took him at 89. We know he had intransits on the skin below the lymph basic so knew it had continued to spread. He did radiation treatment for his lung cancer and hormone therapy for the prostate, and both of those seemed to be quiescent in the later stages of his life. I had to fight the establishment thru some of his consults because he chose his own path versus standard protocol. Let your Dad call the shots – it's hard, but it's his choice. l
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- April 15, 2015 at 12:04 am
It's just hard to know how fast things will happen. My Dad was 81 when diagnosed with a stage IIA lesion. He didn't do the SNB so quite possibly could have been stage III at that point. 5 years later, he had a palpable lymph node under his arm. We cherry picked that know it wasn't a cure but hopefully would buy more time. We stopped scanning about that time. My Dad just hated spending all his time at the VA – it took away quality of life. He had other cancers (prostate, lung, thyroid), but it was assumed that the melanoma took him at 89. We know he had intransits on the skin below the lymph basic so knew it had continued to spread. He did radiation treatment for his lung cancer and hormone therapy for the prostate, and both of those seemed to be quiescent in the later stages of his life. I had to fight the establishment thru some of his consults because he chose his own path versus standard protocol. Let your Dad call the shots – it's hard, but it's his choice. l
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