› Forums › Mucosal Melanoma Community › Mucosal melanoma
- This topic has 6 replies, 4 voices, and was last updated 5 years, 10 months ago by judyk.
- May 24, 2017 at 12:32 am
I have nasosinus mucosal melanoma. I had surgery and radiation and have continued to have endoscopic surgery each time the pet and MRI show some growth so far it has stayed in my sinus area. I am reluctant to have immunotherapy since it is in such a small spot. I may be running out of option. Immunotherapy seems to be for patients with advanced in other areas. It seems to help then but the research doesn't show anyone with 5 year survival with no evidence of disease. Has anyone have a good result with ipi or yervoy. I don't have any of the genome no kit or for skin the braf that makes immunotherapy work better. Anyone even have muscosal melanoma. I am so discouraged
- May 24, 2017 at 12:35 am
I haven't had experience with your type of melanoma, but I want you to know I am thinking of you and sending prayers your way. Hopefully others can chime in with their experiences with immunotherapy and nasosinus mucosal melanoma.
- May 24, 2017 at 12:58 pm
My understanding of immunotherapy is that it is for people who want their immune system to recognize and attack the cancer so that it can be eliminated from their body. I am also a mucosal melanoma patient, but when I got my treatment four years ago my only access to immunotherapy would have been through a clinical trial. My oncologist wanted me to have it surgically removed and try chemotherapy first. Now I am being monitored for recurrence, and I cannot tell you how comforting it is to me to know that there is something (immunotherapy) waiting in the wings for me to try should it come back.
My advice to you, and the only advice I ever give, is to make sure you are being seen at a major cancer center. Someone here the other day said it better. Mucosal melanoma is rare and oncologists who have success in treating it are even more rare.
- June 3, 2017 at 3:11 pm
thanks for your post, I go to nyc sloan kettering and they have a melanoma group there. not many have the mucosal melanoma mostly skin. it is interesting that you had chemo. i had surgery, radiation and more surgery for 5 years but now i guess it will be time to try immunotherapy since they see spots in my liver. i dont have the kit which helps for immunotherapy. but they will use a combination of immune tx. my friend who lives on the west coast had a chemo from a researcher in china who did a trial with chinese people in china. she had surgery and radiation and now 5 years later she is NED strange,.the sloan doctors didnt recommend it but she is free and I am not NED so maybe it is luck of the draw. sho knows but wish you all the best and gods blessings for your health care journey.
- May 24, 2017 at 3:04 pm
I'd like to share this to hopefully help you.
My father also has mucosal melanoma and has been on this journey for 10yrs and is lucky to be treated at MD Anderson in our hometown Houston. He started out Stage 3 and went through radical endoscopic resection surgery which took out his septum and most of his central sinus strcutures (you couldn't tell he's had so much surgery because there are very few surface scars). The area behind my dad's nose is basically all empty. My dad's surgeon specializes in sino-endoscopic and brain base surgery and sorta joked that you don't need all of that stuff. Over the years of monitoring he also has had to have sinonasal endoscopic surgery a few times to remove local recurrances. He too has had radiation to his face and neck. My dad was also lucky to have the cKit mutation and went through 6months of chemo with a drug combo to hopefully prevent recurrance (it was a good amount of time before his 1st local recurrance after this course of treatment). The issue with this aggressive treatment approach is that we aren't sure what kind of difference the combo made towards his NED status or was the surgery or radiation more key? Thing about surgery is once it's done, you're NED again. But in any case, we are grateful for all the time he was NED.
I think that being at a major cancer center certainly made a huge difference in the outcomes for my dad. With such a rare cancer, you need providers that have had at least some exposure and experience with it and where else would you see more than at a major cancer center? The providers aren't just treating patients but are leaders in the field and also instructing and passing along their knowledge to the next generation of providers.
I don't want to bring you down but last year my dad did enter to Stage 4 when they found lesions in his lungs, pancreas, abdomen and brain. This was such a shock after all the years of clear body scans and he didn't show any symptoms from what we could tell. My dad went through 12 weeks of Ipi infusions(1 every 3 weeks) and so far the results have been very, very encouraging. He has scans in another 3 weeks to make sure that the effects are still working but he's tolerated the side effects and got through all 4 infusions. He's developed vitiligo and a mean skin allergy to certain seafoods but it's manageable. He's retired, gardens and cooks and is the original foodie.
I know it's hard not to look at the stats and statistically the Ipi responses are slim, but statistically what were the odds you'd land in the mucosal melanoma column? (like Luke Skywalker shooting a missle at the Death Star's core) But if you've been around as long as some old timers, you'll also see that Ipi hasn't been around that long enough to gather a lot of 5+ yr stats for mucosal (it was excluded from lots of trials). I also like to think my dad isn't just a statistic. 🙂 I would also like to point out that there have been more effective treatment breakthroughs in the last 5-10yrs than there has been i the last 30yrs and it could only get better.
Lastly, you are not alone. I visit the forum everyday and know there are more than a few people here that have mucosal too. I generally join the conversation about mucosal to share my experience with my father for some more perspective of an old timer.
- May 24, 2017 at 4:52 pm
Thank you for all your info. I am going to Sloan Kettering in ny. They said over 20 years they have had 120 patients. Half survived but no one over 5 years. Immunotherapy is new and so are the stats I hope for the best but don't have the kit or braf for any targeted therapy. Ironically my friend was dx also 5 years ago persuaded her Seattle cancer center oncologist to give her the research chemo developed by a Chinese md in china where it is common. She got very sick but now NED. Who knows luck whatever Sloan knows about but it is not impressed with it. The down side of immunotherapy is it can destroy your immune system in the process or later. I guess the benefits outweigh the risks. Today I go again to Sloan to find out the results of my latest scans. One of the concern it is close to my eye although the last surgery was able to get clear margins. Surgery always leaves cells behind so far 5 endoscopy has picked away at it but hasn't eliminated it. I feel well and I try to take each day with gods courage and strength but I am realistic no one has survived this type of cancer. It helps to have people walk the walk with me on my health care journey. Thank you again. Judy
- June 3, 2017 at 3:01 pm
thank you for your reply, i cannot find many people to talk to who have had this dx. mostly it is skin and now I will be having a biopsy for two spots in my liver. i am hoping it is nothing major since i feel fine although melanoma is so aggressive. my next option is immunotherpy which i have been putting off. i have felt so well and i know there are side effects as well as i will be on the medical track. the up side is i have spent 5 years traveling and feeling great so now my health journey has changed. please keep in touch it helps me to know about others and their treatments. i am in nyc and go to sloan kettering
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