Joannxbuc

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–

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–

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–

I have been on Taf/Mek for about 6 months–which I know is the likely start of the end of usefulness for this medication. It has worked well for me in reducing size of tumors and maybe limiting spread. I've had minimal side effects: some fatigue, a couple of weeks of 101+ degree fevers in month 2–which went away, minor rashes that come and go (and are not really bothersome). My oncologist is upbeat (but are they always that way?–other than yours being shocked). He seems pleased with the effects of the Taf/Mek medication and says that there are lots of other things to try. I did do 1 dose of IPI/NIVO before this (but side effects had to stop that treatment). I will be wishing you terrific results and a long good course on this drug. It's been good for me, JoAnn

I was diagnosed with mucosal melanoma in a "gyn" area in 2014 (stage 2B). At that time no spread was shown. I did 10 months of interferon. One year later, mets were shown in my lungs (stage 4). In the winter 2016, I did 1x treatment of IPI/NIVO and developed colitis, so was taken off that drug without completing full 4x dose protocol. Turns out, I am BRAF+ and have been on targeted therapy drugs since May 2016. I have had really good results with that.  It is difficult dealing with the uncertainty of this disease. But new drugs are here and more are on the way. You have to believe in that. And stay off the web (except for this board). Those two things will make your days better. Very best wishes to you and your wife, Joann

Hi–could not figure out how to respond to the original question: sorry! I have been on regular does MEK/TAF for almost 6 months. I've had two scans which have showed good response–I have my 6 month scans next week (so wish me luck!). Anyhow right off, I had mild joint pains and some skins rashes (but the rashes were so much less that other drugs that I had been on (e.g., interferon, 1 dose of ipi/nivo) that it didn't seem like a big deal. For rashes I have used a skin cream, like CeraVe and then a Rx cortisone cream put one on top of each other. That actually worked really well. I really like, and is a recent Rx, a tub of stuff called IC Triamcinolone 0.1% which seems to be a mild cortisone and vasilene. The only real side effect I had was during month 3 I guess. I began to have rolling fevers (from 99-103+) off and on for long periods each day. The suggestion was to take tylenol and advil, drink water. The tylenol and advil worked a little, but not a lot. Then suddently, about 1 month ago, it all just stopped. So I've been fever free for 2 months–oddly enough have one today, but took 2 advils and it dropped to 100.

Good luck with this–the fevers were troubling and I was a little blue about it, but they did go away and now have virtually no side effects.

Best wishes and health, friend,

JoAnn B

Been thinking about this a lot lately. The data is being collected all the time now, every kind of data. Well, I hope there are some better numbers coming; myoncologist just will not answer any question about stats.

Best to you all,

JoAnn

hoping only great news for you!–I started at Stage IIB and now am Stge IV vulvar melanoma and while I am having some immunotherapy treatment and it is going OK (some bad side effects at moment), I wanted to let you know that a number of GYN mucosal melanomas are BRAF mutation positive (although the standard oncologists impression seems to be otherwise). A BRAF mutation is the most common I believe and opens up a wide number of treatment options–if someday you do end up down the road. My oncologist said to my husband and I (although we do shake our heads about this), that in many ways this is the best time ever to have metatastic melanoma. And, there are many of us to talk to and listen and share anytime. Best, JoAnn

Hi Stacy, I'm quite a bit behind you–Phase IV, gyn musocal. melanoma. I had 1st dose Ipi-Nivo only in late January at Dana Farber. Diarrhea developed week 2-3. Mid-February was pretty consisitent, so they stopped additional doses and have been working over past 5-6 weeks to resolve colitis. Was inpatient for IV steroids at 160 mg/day. Tried tapering twice, both times didn't quite work to fix diarrhea. This time, so far, the taper seems to be working & have gotten to 100/day. The plan is to resolve colitis and then come up with new melanoma plan. Scans are at end April Hoping your situation is good! I'll have to see how things play out, too! JoAnn

Hi–I am newly diagnosed as stage IV. will be meeting with onc. next week to discuss options. All sounds so confusing. ipi/nivo/keytruda? how do you decide? How was your program set up? both nivo/ipi, then nevo, then back to both? how frequent are the IVs? I'm at Dana Farber in Boston, onc says lot of choices. 

thanks and best of luck & prayers to everyone on the board

Hi–I am newly diagnosed as stage IV. will be meeting with onc. next week to discuss options. All sounds so confusing. ipi/nivo/keytruda? how do you decide? How was your program set up? both nivo/ipi, then nevo, then back to both? how frequent are the IVs? I'm at Dana Farber in Boston, onc says lot of choices. 

thanks and best of luck & prayers to everyone on the board

Hi–I am newly diagnosed as stage IV. will be meeting with onc. next week to discuss options. All sounds so confusing. ipi/nivo/keytruda? how do you decide? How was your program set up? both nivo/ipi, then nevo, then back to both? how frequent are the IVs? I'm at Dana Farber in Boston, onc says lot of choices. 

thanks and best of luck & prayers to everyone on the board