› Forums › Mucosal Melanoma Community › Interferon or Cisplatin and Temozolomide
- This topic has 15 replies, 3 voices, and was last updated 8 years, 2 months ago by
mary1233.
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- January 27, 2016 at 6:15 am
Father has mucosal melanoma. Had a recurrence after four years from diagnosis. It was removed surgically and now our options are watch and wait or choosing chemo with interferon or Cisplatin and Temozolomide. Anyone else been faced with this decision have any advice? I did ask about ipi but was told there was only one study using it as adjuvant therapy, the dose seemed too high and risky, and it was for those in stage III with a positive lymph node. So oncologist made it sound like it wasn't an option. Thank you to all in advance.
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- January 27, 2016 at 7:41 am
See if he has a C-KIT mutation which is more common with mucosal mel. If so, there are some inhibitors that may work better. Personally, I don't think interferon is worth much if anything, especially for mucosal mel which seems to be more resistant to treatment.
Sounds like you are being offered interferon or chemo, neither of which works well, period. Go for a clinical trial if you can get into one. Look up clinicaltrials.gov.
You always have a choice, you can get a second opinion, ask questions about newer drugs etc. You have to be your own advocate with this, not all oncologists stay on top of the rapid advances in melanoma treatment. Heck, it is hard for us patients – that is a good thing which means there is much going on in the field!
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- January 27, 2016 at 7:41 am
See if he has a C-KIT mutation which is more common with mucosal mel. If so, there are some inhibitors that may work better. Personally, I don't think interferon is worth much if anything, especially for mucosal mel which seems to be more resistant to treatment.
Sounds like you are being offered interferon or chemo, neither of which works well, period. Go for a clinical trial if you can get into one. Look up clinicaltrials.gov.
You always have a choice, you can get a second opinion, ask questions about newer drugs etc. You have to be your own advocate with this, not all oncologists stay on top of the rapid advances in melanoma treatment. Heck, it is hard for us patients – that is a good thing which means there is much going on in the field!
-
- January 27, 2016 at 7:41 am
See if he has a C-KIT mutation which is more common with mucosal mel. If so, there are some inhibitors that may work better. Personally, I don't think interferon is worth much if anything, especially for mucosal mel which seems to be more resistant to treatment.
Sounds like you are being offered interferon or chemo, neither of which works well, period. Go for a clinical trial if you can get into one. Look up clinicaltrials.gov.
You always have a choice, you can get a second opinion, ask questions about newer drugs etc. You have to be your own advocate with this, not all oncologists stay on top of the rapid advances in melanoma treatment. Heck, it is hard for us patients – that is a good thing which means there is much going on in the field!
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- January 27, 2016 at 1:44 pm
Ashley – my best to your father.
I was diagnosed with mucosal melanoma in late 2012. Like your father, it was removed surgically. I went on the cisplatin and temozolomide therapy for six rounds and am without recurrence at this point. Whether this was due to the surgery or the chemo, they cannot say.
Mucosal melanoma is rare so there is very little information, This therapy is based on a Phase II study out of China where mucosal melanoma is more prevalent than here. It compared treatments for mucosal melanoma patients who had complete resections. The arms were watch only, interferon, or the cisplatin/temozolomide. Look it up – the results for the cisplatin/temozolomide were the most successful.
The treatment had the usual side effects of nausea and fatique – not great but certainly manageable. A friend of mine told me that breathing was another side effect of treatment.
Another thing to consider is that ipi has a very low efficacy rate with mucosal melanoma.
Hope this helps.
Mary
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- January 29, 2016 at 8:47 pm
Thank you Mary for your input. I have seen the study its just so hard to decide when its only 1 study and not much else is out there for mucosal.
As far as the breathing side effect does that mean that they may have trouble breathing?
Also, I haven't come across any articles explaining the efficacy of ipi or pd-1 drugs specifically for mucosal melanoma. Could you possibly refer me to this information?
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- February 1, 2016 at 8:48 pm
I am not good at this. If the link does not work it is in the May 28, 2013 Dermatology times issue – Ipilimumab therapy in advanced mucosal melanoma cases yields mixed outcomes.
http://www.cancernetwork.com/smr-2015/nivolumab-shows-promise-mucosal-melanoma
The second link refers to the combination therapy of anti PD-1 and ipilimumab which looks to be more effective.
Things have changed greatly since I had my treatment even though it was just three years ago. There was nothing availabe in immunotherapy for mucosal melanoma in the adjuvant setting. The chemo has kept me going although my oncologist told me that if the cancer returns, immunotherapy will be the option we try first.
The one thing I have learned, as you have also, is that there is almost no information out there. This is so rare that I would not feel safe going anywhere other than a major cancer center. I want an oncologist who has treated mucosal melanoma and who is in on the research so he/she is aware of the results of trials before the results are published. I go to Memorial Sloan Kettering. If I were in your father's position, I would stay within the top 10 of oncology centers in US News and World report. There is a difference.
Hope this helps.
Mary
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- February 1, 2016 at 8:48 pm
I am not good at this. If the link does not work it is in the May 28, 2013 Dermatology times issue – Ipilimumab therapy in advanced mucosal melanoma cases yields mixed outcomes.
http://www.cancernetwork.com/smr-2015/nivolumab-shows-promise-mucosal-melanoma
The second link refers to the combination therapy of anti PD-1 and ipilimumab which looks to be more effective.
Things have changed greatly since I had my treatment even though it was just three years ago. There was nothing availabe in immunotherapy for mucosal melanoma in the adjuvant setting. The chemo has kept me going although my oncologist told me that if the cancer returns, immunotherapy will be the option we try first.
The one thing I have learned, as you have also, is that there is almost no information out there. This is so rare that I would not feel safe going anywhere other than a major cancer center. I want an oncologist who has treated mucosal melanoma and who is in on the research so he/she is aware of the results of trials before the results are published. I go to Memorial Sloan Kettering. If I were in your father's position, I would stay within the top 10 of oncology centers in US News and World report. There is a difference.
Hope this helps.
Mary
-
- February 1, 2016 at 8:48 pm
I am not good at this. If the link does not work it is in the May 28, 2013 Dermatology times issue – Ipilimumab therapy in advanced mucosal melanoma cases yields mixed outcomes.
http://www.cancernetwork.com/smr-2015/nivolumab-shows-promise-mucosal-melanoma
The second link refers to the combination therapy of anti PD-1 and ipilimumab which looks to be more effective.
Things have changed greatly since I had my treatment even though it was just three years ago. There was nothing availabe in immunotherapy for mucosal melanoma in the adjuvant setting. The chemo has kept me going although my oncologist told me that if the cancer returns, immunotherapy will be the option we try first.
The one thing I have learned, as you have also, is that there is almost no information out there. This is so rare that I would not feel safe going anywhere other than a major cancer center. I want an oncologist who has treated mucosal melanoma and who is in on the research so he/she is aware of the results of trials before the results are published. I go to Memorial Sloan Kettering. If I were in your father's position, I would stay within the top 10 of oncology centers in US News and World report. There is a difference.
Hope this helps.
Mary
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- January 29, 2016 at 8:47 pm
Thank you Mary for your input. I have seen the study its just so hard to decide when its only 1 study and not much else is out there for mucosal.
As far as the breathing side effect does that mean that they may have trouble breathing?
Also, I haven't come across any articles explaining the efficacy of ipi or pd-1 drugs specifically for mucosal melanoma. Could you possibly refer me to this information?
-
- January 29, 2016 at 8:47 pm
Thank you Mary for your input. I have seen the study its just so hard to decide when its only 1 study and not much else is out there for mucosal.
As far as the breathing side effect does that mean that they may have trouble breathing?
Also, I haven't come across any articles explaining the efficacy of ipi or pd-1 drugs specifically for mucosal melanoma. Could you possibly refer me to this information?
-
- January 27, 2016 at 1:44 pm
Ashley – my best to your father.
I was diagnosed with mucosal melanoma in late 2012. Like your father, it was removed surgically. I went on the cisplatin and temozolomide therapy for six rounds and am without recurrence at this point. Whether this was due to the surgery or the chemo, they cannot say.
Mucosal melanoma is rare so there is very little information, This therapy is based on a Phase II study out of China where mucosal melanoma is more prevalent than here. It compared treatments for mucosal melanoma patients who had complete resections. The arms were watch only, interferon, or the cisplatin/temozolomide. Look it up – the results for the cisplatin/temozolomide were the most successful.
The treatment had the usual side effects of nausea and fatique – not great but certainly manageable. A friend of mine told me that breathing was another side effect of treatment.
Another thing to consider is that ipi has a very low efficacy rate with mucosal melanoma.
Hope this helps.
Mary
-
- January 27, 2016 at 1:44 pm
Ashley – my best to your father.
I was diagnosed with mucosal melanoma in late 2012. Like your father, it was removed surgically. I went on the cisplatin and temozolomide therapy for six rounds and am without recurrence at this point. Whether this was due to the surgery or the chemo, they cannot say.
Mucosal melanoma is rare so there is very little information, This therapy is based on a Phase II study out of China where mucosal melanoma is more prevalent than here. It compared treatments for mucosal melanoma patients who had complete resections. The arms were watch only, interferon, or the cisplatin/temozolomide. Look it up – the results for the cisplatin/temozolomide were the most successful.
The treatment had the usual side effects of nausea and fatique – not great but certainly manageable. A friend of mine told me that breathing was another side effect of treatment.
Another thing to consider is that ipi has a very low efficacy rate with mucosal melanoma.
Hope this helps.
Mary
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