› Forums › General Melanoma Community › delaying treatment of stage 4 melanoma
- This topic has 21 replies, 4 voices, and was last updated 11 years, 6 months ago by
kylez.
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- August 5, 2014 at 10:26 pm
I was wondering If anyone could give me some advice?
My Dad was recently diagnosed with melanoma in January this year. He had a wide excision of a mole on his back which was > 4mm depth. A CT scan showed axillary lymph node spread and he went on to having alymph node dissection in April this year. Seven of the thirty nodes were positive for melanoma and was due to have radiotherapy in June but a pre-arranged CT scan done a couple of days prior to starting radiotherapy showed up new nodules in both lungs which the radiologist and oncologist are convinced are melanoma but say that all nodules are too small to biospy. They both suggested leaving alone and scanning in 1 month which has just been done. They then said if the nodules had grown they would start vemurafenib. Dad has his scan and went to see the oncologist yesterday. The nodules have slightly increased in size in some and not in others. They have again suggested scanning in 6 weeks time and again starting vemurafenib if they have grown or sooner if Dad becomes symptomatic. At present Dad is not symptomatic at all, in fact he feels better than he has for a long time. Does this seem reasonable? ?..
My Dad is 72yrs old and has had a kidney transplant 2yrs ago. His Transplant team have stopped 1 of his immunosuppressive drugs and halfed the other with no issue to his kidney function. The oncologist is a melanoma specialist in Manchester (we live in the uk) and is reluctant to start ipilimumab at the moment but will do in the future when needs to.
I really don't know where to start.
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- August 5, 2014 at 11:35 pm
This is a very scary diagnosis to hear about your Dad. You may feel both fearful and helpless. You did not mention in your post what it is that your father wants to do. Is he just following along with the doctor's suggestions? Or does he want to be more aggressive? Has he been to see more than one melanoma specialist to hear different options? I myself saw 4 and I received 4 different recommended treatment plans. It's not a disease that has one simple answer. Your father needs to pursue the treatment path that he is comfortable with (it is his life after all).
In the meantime, you can educate yourself on Melanoma and treatment options and this website is a great place to start! You will find people on this message board that are Stage IV and have been for years (some even with no evidence of disease (NED)) – most folks never say "cured" because who knows if it can pop back up years later or not, but NED is the next best thing (and some of those folks may actually be cured).
I can appreciate your doctor's reluctance to start Ipi given your Dad's kidney situation. Ipi supercharges the immune system and while some folks have minimal side-effects, some have more dramatic side-effects where the immune system begins attacking otherwise healthy cells. There is currently no way to know in advance which sort of side-effects your Dad will have, if any, or whether your Dad will be a responder to Ipi – hence your Doctor's hesitation.
The doctor's approach seems like a reasonable one but if you or your father are at all anxious about delaying treatment, you should consider a consulation with another doctor (doesn't hurt to collect opinions).
I am Stage IV myself and have been delaying treatment (my choice not my doctor's) but with my doctor's cooperation. I am instead focusing on optimizing my overall health through diet, exercise and nutrition with the help of a Naturopath. I get scanned by my oncologist's office every 3-4 months. We have agreed that I will remain on my current protocol until such time that the scans detect a new metastasis or I become symptomatic. I will begin treatment with Ipi at that time (or anti PD1 if they'll let me). In the meantime, I feel better than I have in years and I'm thankful for the extra time of feeling good. From March to June my scan showed no new metastases and no change in 3 spots and moderate growth in two. My next scan is September 9th. I reserve the right to completely change my mind about my approach at any time.
Hang in there.
Maggie
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- August 6, 2014 at 8:48 pm
Hi Maggie,
Thank you so much for taking time to answer. Dad is 'happy' toespecially vemurafenib ng with whatever the Dr suggests he is of the opinion that "Drs know best". I though am a bit more dubious!!
I always thought that with cancer you had to treat asap but this does not seem to be the case with melanoma?? I may be totally wrong in saying that though? We have spoken with another melanoma specialist and he feels too that this is the best approach ".watch and wait" then treat when either symptomatic or if nodules increase significantly in size. I just feel 'nervous' about the spread of the disease and overall prognosis but again as you have said as long as Dad is happy with the decision thats all that matters. I just don't want it to be the 'wrong'one.
I have read so many articles in recent weeks about various treatment especially about vemurafenib and ipilimumab but I can not find any on delaying treatment until metastases increase in size they all seem to suggest starting as soon as mets are discovered and thats what I am worrid about.
Hope you continue to feel well, take care.
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- August 6, 2014 at 8:48 pm
Hi Maggie,
Thank you so much for taking time to answer. Dad is 'happy' toespecially vemurafenib ng with whatever the Dr suggests he is of the opinion that "Drs know best". I though am a bit more dubious!!
I always thought that with cancer you had to treat asap but this does not seem to be the case with melanoma?? I may be totally wrong in saying that though? We have spoken with another melanoma specialist and he feels too that this is the best approach ".watch and wait" then treat when either symptomatic or if nodules increase significantly in size. I just feel 'nervous' about the spread of the disease and overall prognosis but again as you have said as long as Dad is happy with the decision thats all that matters. I just don't want it to be the 'wrong'one.
I have read so many articles in recent weeks about various treatment especially about vemurafenib and ipilimumab but I can not find any on delaying treatment until metastases increase in size they all seem to suggest starting as soon as mets are discovered and thats what I am worrid about.
Hope you continue to feel well, take care.
-
- August 7, 2014 at 5:15 am
Yes, most people choose not to delay treatment, and understandably so. You want to kick this thing to the curb as fast as possible. But your father's situation is unique given that he is a transplant recipient. The immune suppression drugs he has been on may have allowed the melanoma to gain a foothold in the first place. By reducting the immune suppression drugs, no doubt your docs are hoping that maybe his own immune system might address the cancer now (but not the kidney). Ipi is a strong immune booster and it is therefore possible that it might damage that kidney. It is a difficult balance. Too weak of an immune system and the cancer may spread. Too strong and it may destroy the kidney. It's a balancing act your doctors must perform to find the sweet spot.
Just to be clear, I do not recommend that others wait to begin treatment. Most people think I am crazy for doing so and they may prove right. But it is my choice based on my own risk/benefit analysis of my remaining time on Earth. These treatments do work wonders for those that have a response.
My fear is that I will not be a responder (there's currently no way to know in advance). In which case I will move from treatment to treatment until the end feeling miserable much of the time. If I turn out to not be a responder, I know I will regret not maximizing the time I had to feel healthy and asymptomatic before treatment. On the other hand, if it turns out I am a responder, well, I will still be a responder when my disease is slightly more advanced than it is now (just one new met and I will begin treatment). My oncologist has treated people far more advanced than I am and those that were responders have ended up doing quite well. In the meantime, I am doing whatever I can to boost my immune system naturally (natural ipi? Ha!). it may not be enough, but it makes me feel good right now. And right now is everything. I'll let you know how it all turns out 😉
Best to you and your Dad,
Maggie
-
- August 7, 2014 at 5:15 am
Yes, most people choose not to delay treatment, and understandably so. You want to kick this thing to the curb as fast as possible. But your father's situation is unique given that he is a transplant recipient. The immune suppression drugs he has been on may have allowed the melanoma to gain a foothold in the first place. By reducting the immune suppression drugs, no doubt your docs are hoping that maybe his own immune system might address the cancer now (but not the kidney). Ipi is a strong immune booster and it is therefore possible that it might damage that kidney. It is a difficult balance. Too weak of an immune system and the cancer may spread. Too strong and it may destroy the kidney. It's a balancing act your doctors must perform to find the sweet spot.
Just to be clear, I do not recommend that others wait to begin treatment. Most people think I am crazy for doing so and they may prove right. But it is my choice based on my own risk/benefit analysis of my remaining time on Earth. These treatments do work wonders for those that have a response.
My fear is that I will not be a responder (there's currently no way to know in advance). In which case I will move from treatment to treatment until the end feeling miserable much of the time. If I turn out to not be a responder, I know I will regret not maximizing the time I had to feel healthy and asymptomatic before treatment. On the other hand, if it turns out I am a responder, well, I will still be a responder when my disease is slightly more advanced than it is now (just one new met and I will begin treatment). My oncologist has treated people far more advanced than I am and those that were responders have ended up doing quite well. In the meantime, I am doing whatever I can to boost my immune system naturally (natural ipi? Ha!). it may not be enough, but it makes me feel good right now. And right now is everything. I'll let you know how it all turns out 😉
Best to you and your Dad,
Maggie
-
- August 7, 2014 at 5:15 am
Yes, most people choose not to delay treatment, and understandably so. You want to kick this thing to the curb as fast as possible. But your father's situation is unique given that he is a transplant recipient. The immune suppression drugs he has been on may have allowed the melanoma to gain a foothold in the first place. By reducting the immune suppression drugs, no doubt your docs are hoping that maybe his own immune system might address the cancer now (but not the kidney). Ipi is a strong immune booster and it is therefore possible that it might damage that kidney. It is a difficult balance. Too weak of an immune system and the cancer may spread. Too strong and it may destroy the kidney. It's a balancing act your doctors must perform to find the sweet spot.
Just to be clear, I do not recommend that others wait to begin treatment. Most people think I am crazy for doing so and they may prove right. But it is my choice based on my own risk/benefit analysis of my remaining time on Earth. These treatments do work wonders for those that have a response.
My fear is that I will not be a responder (there's currently no way to know in advance). In which case I will move from treatment to treatment until the end feeling miserable much of the time. If I turn out to not be a responder, I know I will regret not maximizing the time I had to feel healthy and asymptomatic before treatment. On the other hand, if it turns out I am a responder, well, I will still be a responder when my disease is slightly more advanced than it is now (just one new met and I will begin treatment). My oncologist has treated people far more advanced than I am and those that were responders have ended up doing quite well. In the meantime, I am doing whatever I can to boost my immune system naturally (natural ipi? Ha!). it may not be enough, but it makes me feel good right now. And right now is everything. I'll let you know how it all turns out 😉
Best to you and your Dad,
Maggie
-
- August 6, 2014 at 8:48 pm
Hi Maggie,
Thank you so much for taking time to answer. Dad is 'happy' toespecially vemurafenib ng with whatever the Dr suggests he is of the opinion that "Drs know best". I though am a bit more dubious!!
I always thought that with cancer you had to treat asap but this does not seem to be the case with melanoma?? I may be totally wrong in saying that though? We have spoken with another melanoma specialist and he feels too that this is the best approach ".watch and wait" then treat when either symptomatic or if nodules increase significantly in size. I just feel 'nervous' about the spread of the disease and overall prognosis but again as you have said as long as Dad is happy with the decision thats all that matters. I just don't want it to be the 'wrong'one.
I have read so many articles in recent weeks about various treatment especially about vemurafenib and ipilimumab but I can not find any on delaying treatment until metastases increase in size they all seem to suggest starting as soon as mets are discovered and thats what I am worrid about.
Hope you continue to feel well, take care.
-
- August 5, 2014 at 11:35 pm
This is a very scary diagnosis to hear about your Dad. You may feel both fearful and helpless. You did not mention in your post what it is that your father wants to do. Is he just following along with the doctor's suggestions? Or does he want to be more aggressive? Has he been to see more than one melanoma specialist to hear different options? I myself saw 4 and I received 4 different recommended treatment plans. It's not a disease that has one simple answer. Your father needs to pursue the treatment path that he is comfortable with (it is his life after all).
In the meantime, you can educate yourself on Melanoma and treatment options and this website is a great place to start! You will find people on this message board that are Stage IV and have been for years (some even with no evidence of disease (NED)) – most folks never say "cured" because who knows if it can pop back up years later or not, but NED is the next best thing (and some of those folks may actually be cured).
I can appreciate your doctor's reluctance to start Ipi given your Dad's kidney situation. Ipi supercharges the immune system and while some folks have minimal side-effects, some have more dramatic side-effects where the immune system begins attacking otherwise healthy cells. There is currently no way to know in advance which sort of side-effects your Dad will have, if any, or whether your Dad will be a responder to Ipi – hence your Doctor's hesitation.
The doctor's approach seems like a reasonable one but if you or your father are at all anxious about delaying treatment, you should consider a consulation with another doctor (doesn't hurt to collect opinions).
I am Stage IV myself and have been delaying treatment (my choice not my doctor's) but with my doctor's cooperation. I am instead focusing on optimizing my overall health through diet, exercise and nutrition with the help of a Naturopath. I get scanned by my oncologist's office every 3-4 months. We have agreed that I will remain on my current protocol until such time that the scans detect a new metastasis or I become symptomatic. I will begin treatment with Ipi at that time (or anti PD1 if they'll let me). In the meantime, I feel better than I have in years and I'm thankful for the extra time of feeling good. From March to June my scan showed no new metastases and no change in 3 spots and moderate growth in two. My next scan is September 9th. I reserve the right to completely change my mind about my approach at any time.
Hang in there.
Maggie
-
- August 5, 2014 at 11:35 pm
This is a very scary diagnosis to hear about your Dad. You may feel both fearful and helpless. You did not mention in your post what it is that your father wants to do. Is he just following along with the doctor's suggestions? Or does he want to be more aggressive? Has he been to see more than one melanoma specialist to hear different options? I myself saw 4 and I received 4 different recommended treatment plans. It's not a disease that has one simple answer. Your father needs to pursue the treatment path that he is comfortable with (it is his life after all).
In the meantime, you can educate yourself on Melanoma and treatment options and this website is a great place to start! You will find people on this message board that are Stage IV and have been for years (some even with no evidence of disease (NED)) – most folks never say "cured" because who knows if it can pop back up years later or not, but NED is the next best thing (and some of those folks may actually be cured).
I can appreciate your doctor's reluctance to start Ipi given your Dad's kidney situation. Ipi supercharges the immune system and while some folks have minimal side-effects, some have more dramatic side-effects where the immune system begins attacking otherwise healthy cells. There is currently no way to know in advance which sort of side-effects your Dad will have, if any, or whether your Dad will be a responder to Ipi – hence your Doctor's hesitation.
The doctor's approach seems like a reasonable one but if you or your father are at all anxious about delaying treatment, you should consider a consulation with another doctor (doesn't hurt to collect opinions).
I am Stage IV myself and have been delaying treatment (my choice not my doctor's) but with my doctor's cooperation. I am instead focusing on optimizing my overall health through diet, exercise and nutrition with the help of a Naturopath. I get scanned by my oncologist's office every 3-4 months. We have agreed that I will remain on my current protocol until such time that the scans detect a new metastasis or I become symptomatic. I will begin treatment with Ipi at that time (or anti PD1 if they'll let me). In the meantime, I feel better than I have in years and I'm thankful for the extra time of feeling good. From March to June my scan showed no new metastases and no change in 3 spots and moderate growth in two. My next scan is September 9th. I reserve the right to completely change my mind about my approach at any time.
Hang in there.
Maggie
-
- August 6, 2014 at 4:15 am
Hi,
Maggie gave you some great advice and I'd highly recommend that you seek other oppions and really ask your Dad what he want's to do.
Also vermurafenib also does not last forever, at some point he'd likely need to use something else. They've combined Vermurafenib with a MEK inhibtor with good results, but I don't know if they would nix the combo due to the transplant….
My Mom has stage IV and we were all set for a trial until we found out that she had brain mets… One doctor said he'd start with vermurafenib followed by ipi. Another said he'd start with ipi, move to vermurafenib and if necessary go to a PD1 through a compasionate care program. – This was December 2013.
My Mom had her brain mets treated with gamma knife radiation and went on ipi 4 days later. The results on ipi have been astonishing and they started within days of treatment. – She had 18 tumors on her scalp and they began to tingle and harden within 3 days. By day 21 they had shrunk. By day 42 the largest was gone and many had either disappeared or shrunk dramatically. She got colitis and didn't get her 3rd infusion then, but much later. She ended up with more brain mets and got thoes treated too.
Today you can't find anything but a speck or two on her head and everything is getting smaller or stable and looking less like disease and more like calcium deposits. And her last 2 MRI's of her brain show nothing new and everything looking great.
My Mom depended on me to get educated, ask questions and then ask more… Alone she would not have gotten a second oppinion (we had 4, all specialists) and she probablly would not have chosen ipi… We are lucky we went to more than one specialist. One saved her from undiagnosed brain mets another proposed the right drug, ipi.
Good Luck.
-
- August 6, 2014 at 8:59 pm
Thank you too for answering.
It is so difficult to get my head around 'not treating' cancer for the time being. I keep thinking that surely they must want to treat it to stop it spreading even further but melanoma seems to be a very different cancer?? Dad is happy to go with this at the moment as he does feel so well and has no symptoms what so ever so I will just have to respect his decision and hope I don't regret it at a later stage. We did speak to another specialist and their opinion is 'watch and wait' too so we will see what his next scan in 6weeks shows and take it from there.
Hope you mum keeps well.
-
- August 6, 2014 at 8:59 pm
Thank you too for answering.
It is so difficult to get my head around 'not treating' cancer for the time being. I keep thinking that surely they must want to treat it to stop it spreading even further but melanoma seems to be a very different cancer?? Dad is happy to go with this at the moment as he does feel so well and has no symptoms what so ever so I will just have to respect his decision and hope I don't regret it at a later stage. We did speak to another specialist and their opinion is 'watch and wait' too so we will see what his next scan in 6weeks shows and take it from there.
Hope you mum keeps well.
-
- August 7, 2014 at 5:29 am
I had stage I lesions in 2001 and 2008. Then in 2009-2010 I had a period of 2.5 months of 'wait and watch' for 8 lesions they found in my lungs. They did a chest CT scan in Dec 2009. Then wait and watch till another chest CT scan March 2010. Most had grown slightly (largest was 9mm).
They gave me the option of a second round of 'wait or watch' or to do a VATS lung biopsy surgery to positively confirm melanoma. They wouldn't start treatment for me without confirmation. Since it came back positive, that's when they allowed me to chose to proceed with systemic treatment (which I did).
I don't know how closely that parallels your situation, but it is how my case was handled 4 years ago. I hope that helps. Best of luck with this to your Dad.
– Kyle
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- August 7, 2014 at 5:29 am
I had stage I lesions in 2001 and 2008. Then in 2009-2010 I had a period of 2.5 months of 'wait and watch' for 8 lesions they found in my lungs. They did a chest CT scan in Dec 2009. Then wait and watch till another chest CT scan March 2010. Most had grown slightly (largest was 9mm).
They gave me the option of a second round of 'wait or watch' or to do a VATS lung biopsy surgery to positively confirm melanoma. They wouldn't start treatment for me without confirmation. Since it came back positive, that's when they allowed me to chose to proceed with systemic treatment (which I did).
I don't know how closely that parallels your situation, but it is how my case was handled 4 years ago. I hope that helps. Best of luck with this to your Dad.
– Kyle
-
- August 7, 2014 at 5:29 am
I had stage I lesions in 2001 and 2008. Then in 2009-2010 I had a period of 2.5 months of 'wait and watch' for 8 lesions they found in my lungs. They did a chest CT scan in Dec 2009. Then wait and watch till another chest CT scan March 2010. Most had grown slightly (largest was 9mm).
They gave me the option of a second round of 'wait or watch' or to do a VATS lung biopsy surgery to positively confirm melanoma. They wouldn't start treatment for me without confirmation. Since it came back positive, that's when they allowed me to chose to proceed with systemic treatment (which I did).
I don't know how closely that parallels your situation, but it is how my case was handled 4 years ago. I hope that helps. Best of luck with this to your Dad.
– Kyle
-
- August 6, 2014 at 8:59 pm
Thank you too for answering.
It is so difficult to get my head around 'not treating' cancer for the time being. I keep thinking that surely they must want to treat it to stop it spreading even further but melanoma seems to be a very different cancer?? Dad is happy to go with this at the moment as he does feel so well and has no symptoms what so ever so I will just have to respect his decision and hope I don't regret it at a later stage. We did speak to another specialist and their opinion is 'watch and wait' too so we will see what his next scan in 6weeks shows and take it from there.
Hope you mum keeps well.
-
- August 6, 2014 at 4:15 am
Hi,
Maggie gave you some great advice and I'd highly recommend that you seek other oppions and really ask your Dad what he want's to do.
Also vermurafenib also does not last forever, at some point he'd likely need to use something else. They've combined Vermurafenib with a MEK inhibtor with good results, but I don't know if they would nix the combo due to the transplant….
My Mom has stage IV and we were all set for a trial until we found out that she had brain mets… One doctor said he'd start with vermurafenib followed by ipi. Another said he'd start with ipi, move to vermurafenib and if necessary go to a PD1 through a compasionate care program. – This was December 2013.
My Mom had her brain mets treated with gamma knife radiation and went on ipi 4 days later. The results on ipi have been astonishing and they started within days of treatment. – She had 18 tumors on her scalp and they began to tingle and harden within 3 days. By day 21 they had shrunk. By day 42 the largest was gone and many had either disappeared or shrunk dramatically. She got colitis and didn't get her 3rd infusion then, but much later. She ended up with more brain mets and got thoes treated too.
Today you can't find anything but a speck or two on her head and everything is getting smaller or stable and looking less like disease and more like calcium deposits. And her last 2 MRI's of her brain show nothing new and everything looking great.
My Mom depended on me to get educated, ask questions and then ask more… Alone she would not have gotten a second oppinion (we had 4, all specialists) and she probablly would not have chosen ipi… We are lucky we went to more than one specialist. One saved her from undiagnosed brain mets another proposed the right drug, ipi.
Good Luck.
-
- August 6, 2014 at 4:15 am
Hi,
Maggie gave you some great advice and I'd highly recommend that you seek other oppions and really ask your Dad what he want's to do.
Also vermurafenib also does not last forever, at some point he'd likely need to use something else. They've combined Vermurafenib with a MEK inhibtor with good results, but I don't know if they would nix the combo due to the transplant….
My Mom has stage IV and we were all set for a trial until we found out that she had brain mets… One doctor said he'd start with vermurafenib followed by ipi. Another said he'd start with ipi, move to vermurafenib and if necessary go to a PD1 through a compasionate care program. – This was December 2013.
My Mom had her brain mets treated with gamma knife radiation and went on ipi 4 days later. The results on ipi have been astonishing and they started within days of treatment. – She had 18 tumors on her scalp and they began to tingle and harden within 3 days. By day 21 they had shrunk. By day 42 the largest was gone and many had either disappeared or shrunk dramatically. She got colitis and didn't get her 3rd infusion then, but much later. She ended up with more brain mets and got thoes treated too.
Today you can't find anything but a speck or two on her head and everything is getting smaller or stable and looking less like disease and more like calcium deposits. And her last 2 MRI's of her brain show nothing new and everything looking great.
My Mom depended on me to get educated, ask questions and then ask more… Alone she would not have gotten a second oppinion (we had 4, all specialists) and she probablly would not have chosen ipi… We are lucky we went to more than one specialist. One saved her from undiagnosed brain mets another proposed the right drug, ipi.
Good Luck.
-
Tagged: cutaneous melanoma
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