› Forums › General Melanoma Community › Treatment Options versus Quality of Life – Stage IIIC
- This topic has 36 replies, 7 voices, and was last updated 11 years ago by
oldblue.
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- November 3, 2014 at 8:46 pm
My father had his primary melanoma tumor removed in May 2014 by his general practioner. The spot was on his trunk. Once the biopsy confirmed it was melanoma, he was then referred to a general surgeon to have larger margins removed. In hindsight, he should have been referred to a medical oncologist for surgery rather than the doctor that did the surgery. At his first visit to a cancer center he was told the stage was a 'risky' IIC. On the Breslow scale it was a Stage V and a Stage IV on the Clarks scale. At the first visit, the oncologist told my dad the treatment options for melanoma were not great. The treatments often have harsh side effects without a lot of proven success stories to show they are succesful in extending life. Last month he had an axillary dissection to remove lymph nodes that were detected in a recent scan (the lymph nodes were on the same side as the orginal tumor and under the armpit area). The biopsy of the lymph nodes were positive for 3 lymph nodes with one being fairly large. His cancer is now classified as a Stage IIIC.
Last week he had a visit with the radiation oncologist where it was suggested he has radiation on the trunk where the original tumor was removed extending up to where the recent lymph nodes were removed. He was also told the chance of the melanoma spreading to the brain was fairly likely. He meets with the radiation oncologist later this week as well with the chemo oncologist to discuss treatment options.
My father is in 70's. He is still active (despite having a bit of a hard time recovering from the two surgeries listed above). He also has the following health concerns: high blood pressure, enlarged heart, hardening/calcifications of the arteries, gallstones, cyst on a kidney, colon diverticulosis, background of pulmonary emphysema, small lobe on lung (too small at this point to determine on the PET scan if it's cancer) and bronchiectasis.
While I wish my father would get a second opinion (going to a hospital where there's more of a focus on melanoma), I don't believe he will. When I read the messages on this board, there are obviously treatments that are working for lots of people and I would like to think there's a treatment option that is suitable for him.
I'm curious if any of you have relevant information for someone in a similar situation. After we watched my mother pass away from colon cancer 5 years ago, we know that quality of life is something we shouldn't take for granted.
My questions are: given the area they want to do radiation on, how tough are the side effects – 6 weeks for 5 days a week? I also question why they are wanting to do radiation since he's been told he has an agressive form of melanoma and the radiation is only treating a targeted area. I believe they will also suggest interfuron as a treatment option. The oncologist has already said the side effects can be tough and many people aren't able to tolerate them. For someone around my dad's age with less than perfect health, are there many success stories that show it works without having harsh side effects? Should my dad deny any further treatment, do you know of studies that show how long it takes for the type of cancer he has before there's a recurrence? Should a recurrence happen, is there typically an extended amount of time before the cancer causes such side effects that it's hard to go about your daily life?
I know some of my questions aren't easy to answer but hoping someone in a similar situation has information to share. I'll be going to the doctor with my dad later this week and want to make sure I'm helping to ask the right questions. There's a lot of information to find online but it's when I'm trying to combine multiple aspects that it's harder to discern the information.
Thanks for taking the time to read this.
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- November 3, 2014 at 9:13 pm
First off, there are not a lot of treatment options if you are NED (no evidence of disease). Stage III with no other disease – there are 3 options. Ok, maybe 4. Do nothing. Do localized radiation. Do Interferon. Do a clinical trial.
My Dad was 81 when diagnosed and I wouldn't have let anyone suggest Interferon for him. It has no survival benefit, only a delayed recurrence. So, if it isn't going to change his survival ratings, why should I subject my Dad to this very toxic treatment? It wasn't going to happen.
Clinical trials – may or may not be an option. Your Dad would have to see a specialist who had trials available, but his other health issues may not make him a good candidate. Some trials include Yervoy (ipilimumab) but your Dad's diverticulosis might kick him out of that one – Yervoy can be tough causing colitis and similar issues.
Radiation – can kill some cells locally, but has limited benefit otherwise. I'm not sure I'd want my Dad to have a large field radiated if it is likely that the melanoma might already be elsewhere? Just for reference, my Dad did have lung radiation for lung cancer, not melanoma. 3 sessions of very high dose. It caused him some skin burns and lots of fatigue. For the lung cancer, it ended up being curative. But I'd personally want a second opinion because I'm not positive how much the radiation will buy you. However, it is a valid option.
There really are no other options for stage IIIC. Stage IV does have the option of more clinical trials and possibly "Keytruda", but he's not stage IV at this time. Truthfully, he really needs to see a specialist who can lay out all the options. My Dad chose "quality" over "quantity". He was stage II at 81. He finally passed away at 89 from melanoma, but had few treatments — with quality always in mind.
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- November 4, 2014 at 1:34 am
Janner – thank you so much for your very thorough response. I'm sorry you also had to go through this with your dad. However, it's nice to hear his story that he fought it for 8 years while focusing on quality of life. Most of your comments help validate my thoughts on treatment options.
Thanks again!
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- November 4, 2014 at 1:34 am
Janner – thank you so much for your very thorough response. I'm sorry you also had to go through this with your dad. However, it's nice to hear his story that he fought it for 8 years while focusing on quality of life. Most of your comments help validate my thoughts on treatment options.
Thanks again!
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- November 5, 2014 at 10:23 am
Hi Anonymous,
Ty Bollinger wrote a book called "Cancer, Step Outside the Box."
He also recently produced a series of interviews with different health
professionals on alternative and complimentary cancer treatments
called "The Truth about Cancer." Very informative.
There are ways to deal with cancer, even Melanoma, other than standard of care.
I had Malig Mel 23 years ago. It re-emerged 3 years ago in axillary
lymph node as St 3C. I am fully informed on standard treatment and
see my oncologist regularly. I have a surgeon, radiologist, and Naturopathic Oncologist
on my team. The naturo/Onco is my main guide and I keep my docs informed. I have, after the first year, had a couple of surgeries and
a few months ago Steriotactic highdose radiation post 2nd surgery
(now St 4) on a tumor which was , as it turned out, only partially resectable. Initially I did hyperthermia
treatments, full body and local in Canadal, Vit C and alpha lipoic acid IVs, a series of supplements,
low dose pharmecuticals, Mistletoe injctions, dietary changes… I am listing a few things to say that there
are options. The thing is, the patient has to embrace the possibility and make changes in
their lifestyle. I am, at his point, tumor free-NED. I did everything I could to support my immune
system and avoided things that would harm it. My oncologist says I'm remarkable. All I can tell you is that in the world… there is a lot more going on in cancer treatment. I wish you and your dad well. Ann
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- November 5, 2014 at 10:23 am
Hi Anonymous,
Ty Bollinger wrote a book called "Cancer, Step Outside the Box."
He also recently produced a series of interviews with different health
professionals on alternative and complimentary cancer treatments
called "The Truth about Cancer." Very informative.
There are ways to deal with cancer, even Melanoma, other than standard of care.
I had Malig Mel 23 years ago. It re-emerged 3 years ago in axillary
lymph node as St 3C. I am fully informed on standard treatment and
see my oncologist regularly. I have a surgeon, radiologist, and Naturopathic Oncologist
on my team. The naturo/Onco is my main guide and I keep my docs informed. I have, after the first year, had a couple of surgeries and
a few months ago Steriotactic highdose radiation post 2nd surgery
(now St 4) on a tumor which was , as it turned out, only partially resectable. Initially I did hyperthermia
treatments, full body and local in Canadal, Vit C and alpha lipoic acid IVs, a series of supplements,
low dose pharmecuticals, Mistletoe injctions, dietary changes… I am listing a few things to say that there
are options. The thing is, the patient has to embrace the possibility and make changes in
their lifestyle. I am, at his point, tumor free-NED. I did everything I could to support my immune
system and avoided things that would harm it. My oncologist says I'm remarkable. All I can tell you is that in the world… there is a lot more going on in cancer treatment. I wish you and your dad well. Ann
-
- November 5, 2014 at 10:23 am
Hi Anonymous,
Ty Bollinger wrote a book called "Cancer, Step Outside the Box."
He also recently produced a series of interviews with different health
professionals on alternative and complimentary cancer treatments
called "The Truth about Cancer." Very informative.
There are ways to deal with cancer, even Melanoma, other than standard of care.
I had Malig Mel 23 years ago. It re-emerged 3 years ago in axillary
lymph node as St 3C. I am fully informed on standard treatment and
see my oncologist regularly. I have a surgeon, radiologist, and Naturopathic Oncologist
on my team. The naturo/Onco is my main guide and I keep my docs informed. I have, after the first year, had a couple of surgeries and
a few months ago Steriotactic highdose radiation post 2nd surgery
(now St 4) on a tumor which was , as it turned out, only partially resectable. Initially I did hyperthermia
treatments, full body and local in Canadal, Vit C and alpha lipoic acid IVs, a series of supplements,
low dose pharmecuticals, Mistletoe injctions, dietary changes… I am listing a few things to say that there
are options. The thing is, the patient has to embrace the possibility and make changes in
their lifestyle. I am, at his point, tumor free-NED. I did everything I could to support my immune
system and avoided things that would harm it. My oncologist says I'm remarkable. All I can tell you is that in the world… there is a lot more going on in cancer treatment. I wish you and your dad well. Ann
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- November 4, 2014 at 1:34 am
Janner – thank you so much for your very thorough response. I'm sorry you also had to go through this with your dad. However, it's nice to hear his story that he fought it for 8 years while focusing on quality of life. Most of your comments help validate my thoughts on treatment options.
Thanks again!
-
- November 3, 2014 at 9:13 pm
First off, there are not a lot of treatment options if you are NED (no evidence of disease). Stage III with no other disease – there are 3 options. Ok, maybe 4. Do nothing. Do localized radiation. Do Interferon. Do a clinical trial.
My Dad was 81 when diagnosed and I wouldn't have let anyone suggest Interferon for him. It has no survival benefit, only a delayed recurrence. So, if it isn't going to change his survival ratings, why should I subject my Dad to this very toxic treatment? It wasn't going to happen.
Clinical trials – may or may not be an option. Your Dad would have to see a specialist who had trials available, but his other health issues may not make him a good candidate. Some trials include Yervoy (ipilimumab) but your Dad's diverticulosis might kick him out of that one – Yervoy can be tough causing colitis and similar issues.
Radiation – can kill some cells locally, but has limited benefit otherwise. I'm not sure I'd want my Dad to have a large field radiated if it is likely that the melanoma might already be elsewhere? Just for reference, my Dad did have lung radiation for lung cancer, not melanoma. 3 sessions of very high dose. It caused him some skin burns and lots of fatigue. For the lung cancer, it ended up being curative. But I'd personally want a second opinion because I'm not positive how much the radiation will buy you. However, it is a valid option.
There really are no other options for stage IIIC. Stage IV does have the option of more clinical trials and possibly "Keytruda", but he's not stage IV at this time. Truthfully, he really needs to see a specialist who can lay out all the options. My Dad chose "quality" over "quantity". He was stage II at 81. He finally passed away at 89 from melanoma, but had few treatments — with quality always in mind.
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- November 3, 2014 at 9:13 pm
First off, there are not a lot of treatment options if you are NED (no evidence of disease). Stage III with no other disease – there are 3 options. Ok, maybe 4. Do nothing. Do localized radiation. Do Interferon. Do a clinical trial.
My Dad was 81 when diagnosed and I wouldn't have let anyone suggest Interferon for him. It has no survival benefit, only a delayed recurrence. So, if it isn't going to change his survival ratings, why should I subject my Dad to this very toxic treatment? It wasn't going to happen.
Clinical trials – may or may not be an option. Your Dad would have to see a specialist who had trials available, but his other health issues may not make him a good candidate. Some trials include Yervoy (ipilimumab) but your Dad's diverticulosis might kick him out of that one – Yervoy can be tough causing colitis and similar issues.
Radiation – can kill some cells locally, but has limited benefit otherwise. I'm not sure I'd want my Dad to have a large field radiated if it is likely that the melanoma might already be elsewhere? Just for reference, my Dad did have lung radiation for lung cancer, not melanoma. 3 sessions of very high dose. It caused him some skin burns and lots of fatigue. For the lung cancer, it ended up being curative. But I'd personally want a second opinion because I'm not positive how much the radiation will buy you. However, it is a valid option.
There really are no other options for stage IIIC. Stage IV does have the option of more clinical trials and possibly "Keytruda", but he's not stage IV at this time. Truthfully, he really needs to see a specialist who can lay out all the options. My Dad chose "quality" over "quantity". He was stage II at 81. He finally passed away at 89 from melanoma, but had few treatments — with quality always in mind.
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- November 4, 2014 at 4:52 am
I am stage 3 C and had a neck dissection with 5 lymph nodes involved and removed Feb 2014..I had no radiation, did the 30 day HD interferon in April and failed it, spread to my lungs and still had 2 lymph nodes positive for melanoma, was then put on Yervoy and finished it Aug 13 and spots in lungs are GONE and only one left in my neck but has shrank to half it size..Scans again in Dec..Good luck..Only side effects was some fatigue and slight hair loss..
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- November 4, 2014 at 4:52 am
I am stage 3 C and had a neck dissection with 5 lymph nodes involved and removed Feb 2014..I had no radiation, did the 30 day HD interferon in April and failed it, spread to my lungs and still had 2 lymph nodes positive for melanoma, was then put on Yervoy and finished it Aug 13 and spots in lungs are GONE and only one left in my neck but has shrank to half it size..Scans again in Dec..Good luck..Only side effects was some fatigue and slight hair loss..
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- November 4, 2014 at 4:52 am
I am stage 3 C and had a neck dissection with 5 lymph nodes involved and removed Feb 2014..I had no radiation, did the 30 day HD interferon in April and failed it, spread to my lungs and still had 2 lymph nodes positive for melanoma, was then put on Yervoy and finished it Aug 13 and spots in lungs are GONE and only one left in my neck but has shrank to half it size..Scans again in Dec..Good luck..Only side effects was some fatigue and slight hair loss..
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- November 4, 2014 at 7:22 am
My dad was a couple months shy of 82 when he was diagnosed as IIIC with his primary near his knee. That tumor was removed (surgery in hospital since the tumor depth was 20 mm), and the plan was to watch and wait with check-ups every six months. Another tumor appeared about five months later in the same spot. That one was also removed in the hospital. (With both surgeries, however, I insisted on local anesthesia given his age and heart issues.)
Two months later, about three more tumors appeared, and a PET/CT showed mets in his lungs and hip bone, which pushed him to Stage IV. They weren't able to remove the new tumors since his skin is already so tightly stretched from the previous surgeries. He's now done two infusions of Yervoy and his first with Keytruda. He's had no side effects so far, save a mild rash and a little itchiness since the first Keytruda infusion.
My dad had a sextuple bypass three years ago and has peripheral artery disease, though that hasn't caused him any problems. He has a good amount of neuropathic pain from the tumors on his leg but feels well otherwise.
I guess my suggestion would be to watch and wait. Once he advances to Stage IV, he'll have better treatment options open to him. My dad goes to the UCSF Melanoma Clinic, and that's what they recommended for him, though obviously each case is different. I'd definitely push him to see a melanoma specialist. Best of luck to you — it sucks to see our parents go through this and to feel so powerless to help.
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- November 4, 2014 at 7:22 am
My dad was a couple months shy of 82 when he was diagnosed as IIIC with his primary near his knee. That tumor was removed (surgery in hospital since the tumor depth was 20 mm), and the plan was to watch and wait with check-ups every six months. Another tumor appeared about five months later in the same spot. That one was also removed in the hospital. (With both surgeries, however, I insisted on local anesthesia given his age and heart issues.)
Two months later, about three more tumors appeared, and a PET/CT showed mets in his lungs and hip bone, which pushed him to Stage IV. They weren't able to remove the new tumors since his skin is already so tightly stretched from the previous surgeries. He's now done two infusions of Yervoy and his first with Keytruda. He's had no side effects so far, save a mild rash and a little itchiness since the first Keytruda infusion.
My dad had a sextuple bypass three years ago and has peripheral artery disease, though that hasn't caused him any problems. He has a good amount of neuropathic pain from the tumors on his leg but feels well otherwise.
I guess my suggestion would be to watch and wait. Once he advances to Stage IV, he'll have better treatment options open to him. My dad goes to the UCSF Melanoma Clinic, and that's what they recommended for him, though obviously each case is different. I'd definitely push him to see a melanoma specialist. Best of luck to you — it sucks to see our parents go through this and to feel so powerless to help.
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- November 4, 2014 at 7:22 am
My dad was a couple months shy of 82 when he was diagnosed as IIIC with his primary near his knee. That tumor was removed (surgery in hospital since the tumor depth was 20 mm), and the plan was to watch and wait with check-ups every six months. Another tumor appeared about five months later in the same spot. That one was also removed in the hospital. (With both surgeries, however, I insisted on local anesthesia given his age and heart issues.)
Two months later, about three more tumors appeared, and a PET/CT showed mets in his lungs and hip bone, which pushed him to Stage IV. They weren't able to remove the new tumors since his skin is already so tightly stretched from the previous surgeries. He's now done two infusions of Yervoy and his first with Keytruda. He's had no side effects so far, save a mild rash and a little itchiness since the first Keytruda infusion.
My dad had a sextuple bypass three years ago and has peripheral artery disease, though that hasn't caused him any problems. He has a good amount of neuropathic pain from the tumors on his leg but feels well otherwise.
I guess my suggestion would be to watch and wait. Once he advances to Stage IV, he'll have better treatment options open to him. My dad goes to the UCSF Melanoma Clinic, and that's what they recommended for him, though obviously each case is different. I'd definitely push him to see a melanoma specialist. Best of luck to you — it sucks to see our parents go through this and to feel so powerless to help.
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- November 4, 2014 at 5:22 pm
Thank you for taking the time to respond. I totally agree…cancer sucks and it's so hard now to see both my parents faced with it. It's reassuring for me to read that if he chooses to not have any treatment now there are success stories for people once it has progressed to Stage IV. Best of luck to your father and I hope Yervoy and Keytruda provides fantastic results!
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- November 4, 2014 at 5:22 pm
Thank you for taking the time to respond. I totally agree…cancer sucks and it's so hard now to see both my parents faced with it. It's reassuring for me to read that if he chooses to not have any treatment now there are success stories for people once it has progressed to Stage IV. Best of luck to your father and I hope Yervoy and Keytruda provides fantastic results!
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- November 4, 2014 at 5:22 pm
Thank you for taking the time to respond. I totally agree…cancer sucks and it's so hard now to see both my parents faced with it. It's reassuring for me to read that if he chooses to not have any treatment now there are success stories for people once it has progressed to Stage IV. Best of luck to your father and I hope Yervoy and Keytruda provides fantastic results!
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