› Forums › Mucosal Melanoma Community › Vulvar Mucosal Melanoma Treatments?
- This topic has 24 replies, 5 voices, and was last updated 7 years, 4 months ago by
Joannxbuc.
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- December 5, 2016 at 8:24 pm
I received a diagonosis of Vulvar Mucosal Melanoma October 2016. After two surgeries to excise the area, my Staging is IIB3. All cancer cells have been removed, no lymph node involvement and no other tumors present. I have seen doctors at Mayo Clinic and locally. With a 50-50 chance of the melanoma coming back, my options are 1) Do nothing. 2) Cisplatin with Temozdomide 3) Ipilimumab. First option is out of the question. I want to be just as aggressive as the cancer is. The two remaining treatments; the Chemo (Cisplatin) is backed up with the ONE study done with Stage II and Stage III MM patients. This is the ONLY study done exclusively on mucosal melanoma. The results were very favorable. The second treatment, Ipilimumab (according to my research) is for 'advanced' mucosal melanoma or skin cancer. I do not have skin cancer…that would have been an awkward sunbathing position! Both treatments are promising. I feel I have one chance to get this right and typically I can't pick the winner out of a one horse race. I've read several threads here, and I hear a lot about Ipillimumab (Yervoy) but most are concerning more advanced staging or skin cancer. I would like to hear if someone has done a head to head comparison on the two treatment options…or opinions or arguments for or against Cisplatin w/Temozdomide and/or Ipilimumab for Stage 2B3 and wanting to stay 2B3. God Bless and Thank You!
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- December 6, 2016 at 2:11 pm
Where are you being treated? I hope that chemo wasn't a pushed option. So many other options are better. Have you been tested to find out if your braf positive or negative? Also Ckit? I would lookup a great Facebook group, "Mucosal Melanoma Warriors"
Lots of great advice, guidance and support from this special group.
Wishing you the best!
Wendy XO
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- December 6, 2016 at 2:11 pm
Where are you being treated? I hope that chemo wasn't a pushed option. So many other options are better. Have you been tested to find out if your braf positive or negative? Also Ckit? I would lookup a great Facebook group, "Mucosal Melanoma Warriors"
Lots of great advice, guidance and support from this special group.
Wishing you the best!
Wendy XO
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- December 6, 2016 at 2:11 pm
Where are you being treated? I hope that chemo wasn't a pushed option. So many other options are better. Have you been tested to find out if your braf positive or negative? Also Ckit? I would lookup a great Facebook group, "Mucosal Melanoma Warriors"
Lots of great advice, guidance and support from this special group.
Wishing you the best!
Wendy XO
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- December 6, 2016 at 4:31 pm
You should really find a melanoma specialist, and even further, find a melanoma specialist that has dealt with mucosal patients. If that means a bit of travel, that might seem like a lot, but it could mean a world of difference in your care and treatment. Others on here don't live near a mel specialist, but they find one and travel once in a while for check ups, then they make sure that their local oncologist and the specialist are in contact and the specialist calls all the shots as far as treatments and what not.
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- December 6, 2016 at 4:31 pm
You should really find a melanoma specialist, and even further, find a melanoma specialist that has dealt with mucosal patients. If that means a bit of travel, that might seem like a lot, but it could mean a world of difference in your care and treatment. Others on here don't live near a mel specialist, but they find one and travel once in a while for check ups, then they make sure that their local oncologist and the specialist are in contact and the specialist calls all the shots as far as treatments and what not.
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- December 6, 2016 at 10:02 pm
You are right. This has been such a whirl wind, I didn't check my local Oncologists creds. I couldn't agree more, Melanoma Oncologist is my best bet! Sometimes we miss the obvious. I will certainly be bringing this up tomorrow in my appointment!.
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- December 6, 2016 at 10:02 pm
You are right. This has been such a whirl wind, I didn't check my local Oncologists creds. I couldn't agree more, Melanoma Oncologist is my best bet! Sometimes we miss the obvious. I will certainly be bringing this up tomorrow in my appointment!.
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- December 6, 2016 at 10:02 pm
You are right. This has been such a whirl wind, I didn't check my local Oncologists creds. I couldn't agree more, Melanoma Oncologist is my best bet! Sometimes we miss the obvious. I will certainly be bringing this up tomorrow in my appointment!.
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- December 6, 2016 at 4:31 pm
You should really find a melanoma specialist, and even further, find a melanoma specialist that has dealt with mucosal patients. If that means a bit of travel, that might seem like a lot, but it could mean a world of difference in your care and treatment. Others on here don't live near a mel specialist, but they find one and travel once in a while for check ups, then they make sure that their local oncologist and the specialist are in contact and the specialist calls all the shots as far as treatments and what not.
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- December 6, 2016 at 6:30 pm
Sorry for your diagnosis.
I was diagnosed four years ago with vaginal mucosal melanoma with local lymph node involvement. The treatment plan offered to me at Sloan Kettering was the cisplatin/temozolomide – like you I was facing the high chance that it would come back. It has not. I was told that it was considered to be an aggressive treatment which was what I wanted.
I have been told, however, if it does recur, I will be looking at immunotherapy.
Best wishes to you. Let us know what you decide.
Mary
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- December 6, 2016 at 6:30 pm
Sorry for your diagnosis.
I was diagnosed four years ago with vaginal mucosal melanoma with local lymph node involvement. The treatment plan offered to me at Sloan Kettering was the cisplatin/temozolomide – like you I was facing the high chance that it would come back. It has not. I was told that it was considered to be an aggressive treatment which was what I wanted.
I have been told, however, if it does recur, I will be looking at immunotherapy.
Best wishes to you. Let us know what you decide.
Mary
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- December 6, 2016 at 10:00 pm
It is extremely encouraging to hear you are still in the game after four years Mary!! Thank you for that, as today has been a bad day. Thank you for your reply! The treatment plan the Melanoma Oncologist at Mayo recommend is the same…cisplatin/tmeozolomide above immunotherapy. My thoughts are to keep immunotherapy in the tool box for IF it comes back. My lymph nodes were clear and I am thankful for my prayer warriors. I have an appointment tomorrow with my local Oncologist who is recommending the immunotherapy. Have an appointment next week with a 3rd Oncologists..Melanoma Oncologist, at the Med Center. This disease has been extremely hard to wrap my head around as I am a planner and when the answers to your questions over and over again is "they don't know", it is very discouraging. I need ground beneath my feet, I am a fighter, but I feel like I am swinging in the wind. My time is running out on figuring out a treatment, I need to decide. Prayers for your continued success in being disease free Mary!! I will keep you posted.
R
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- December 6, 2016 at 10:00 pm
It is extremely encouraging to hear you are still in the game after four years Mary!! Thank you for that, as today has been a bad day. Thank you for your reply! The treatment plan the Melanoma Oncologist at Mayo recommend is the same…cisplatin/tmeozolomide above immunotherapy. My thoughts are to keep immunotherapy in the tool box for IF it comes back. My lymph nodes were clear and I am thankful for my prayer warriors. I have an appointment tomorrow with my local Oncologist who is recommending the immunotherapy. Have an appointment next week with a 3rd Oncologists..Melanoma Oncologist, at the Med Center. This disease has been extremely hard to wrap my head around as I am a planner and when the answers to your questions over and over again is "they don't know", it is very discouraging. I need ground beneath my feet, I am a fighter, but I feel like I am swinging in the wind. My time is running out on figuring out a treatment, I need to decide. Prayers for your continued success in being disease free Mary!! I will keep you posted.
R
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- December 6, 2016 at 10:00 pm
It is extremely encouraging to hear you are still in the game after four years Mary!! Thank you for that, as today has been a bad day. Thank you for your reply! The treatment plan the Melanoma Oncologist at Mayo recommend is the same…cisplatin/tmeozolomide above immunotherapy. My thoughts are to keep immunotherapy in the tool box for IF it comes back. My lymph nodes were clear and I am thankful for my prayer warriors. I have an appointment tomorrow with my local Oncologist who is recommending the immunotherapy. Have an appointment next week with a 3rd Oncologists..Melanoma Oncologist, at the Med Center. This disease has been extremely hard to wrap my head around as I am a planner and when the answers to your questions over and over again is "they don't know", it is very discouraging. I need ground beneath my feet, I am a fighter, but I feel like I am swinging in the wind. My time is running out on figuring out a treatment, I need to decide. Prayers for your continued success in being disease free Mary!! I will keep you posted.
R
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- December 6, 2016 at 6:30 pm
Sorry for your diagnosis.
I was diagnosed four years ago with vaginal mucosal melanoma with local lymph node involvement. The treatment plan offered to me at Sloan Kettering was the cisplatin/temozolomide – like you I was facing the high chance that it would come back. It has not. I was told that it was considered to be an aggressive treatment which was what I wanted.
I have been told, however, if it does recur, I will be looking at immunotherapy.
Best wishes to you. Let us know what you decide.
Mary
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- December 15, 2016 at 8:40 pm
Hi. Also diagnosed vulval melanoma 9/14. Had surgery, staged at IIb. Did interferon for about 10 months. 5/16 showed lung spot which showed no growth until 12/16 scan. Waiting for biopsy report–worried, confused about what I should do. So please let all of us know what you think about options. What do you understand difference between mucosal and skin melanoma? I have a melanoma oncologist at Dana Farber in Boston. I am 65 yo woman. Doesn't seem like a lot of data or experience with MM. thanks–
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- December 15, 2016 at 8:40 pm
Hi. Also diagnosed vulval melanoma 9/14. Had surgery, staged at IIb. Did interferon for about 10 months. 5/16 showed lung spot which showed no growth until 12/16 scan. Waiting for biopsy report–worried, confused about what I should do. So please let all of us know what you think about options. What do you understand difference between mucosal and skin melanoma? I have a melanoma oncologist at Dana Farber in Boston. I am 65 yo woman. Doesn't seem like a lot of data or experience with MM. thanks–
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- December 15, 2016 at 8:40 pm
Hi. Also diagnosed vulval melanoma 9/14. Had surgery, staged at IIb. Did interferon for about 10 months. 5/16 showed lung spot which showed no growth until 12/16 scan. Waiting for biopsy report–worried, confused about what I should do. So please let all of us know what you think about options. What do you understand difference between mucosal and skin melanoma? I have a melanoma oncologist at Dana Farber in Boston. I am 65 yo woman. Doesn't seem like a lot of data or experience with MM. thanks–
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Tagged: cutaneous melanoma, mucosal melanoma
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