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Hi, I am new to the board and this is my first time posting.
My husband was diagnosed with mucosal melanoma on his vocal cords in February this year. Originally the oncologist thought it was a wrong pathology report as they had never seen it before, but after retesting it came back with the same result. They suggested surgery due to concerns of restrictions to his airway, we opted to wait and have tests to find if it was anywhere else in his body, all came back negative.
When we went to see the radiation oncologist he told us that the surgeon suggested not to go with surgery but recommended radiation. After 20 sessions of radiation it is no longer bleeding and there are no breathing issues, his voice is horse all the time and the radiation has made him very fatigued. We now have to wait for a scan date and the next appointment is not scheduled until August.
Anybody out there in a similar situation? Any suggestions what other treatments maybe available ?
Hello – Greetings from Ontario – you'll find there's a few canucks here but we're all sorry you've had to make your way here too.
I don't have mel, am only a caregiver but I can tell you that this site has a weath of info from people with all types of melanoma. If you use the search tool, you'll be able to bring up quite a few posts about mucosal in particular. But, to start you off – if you go down to the bottom of the page, you'll see the previous pages and near the top of page 2 is another inquiry about mucosal and you can read the responses given there >> it should steer you in the right direction.
Hi, my mom has Stage IV anal mucosal melanoma. She has had one dose of the ipi/nivo combo, one dose of pembrolizumab, five rounds of radiation, and two cycles of Abraxane. We are now waiting to sign consent forms to start the IMCGP100 clinical trial. It's been a difficult road, but we are still hopeful and hoping that the this treatment will have a good response.
We live in California, but my husband is from Toronto, so he is familiar with where to go over there. Have you gone to a melanoma specialist that has experience in mucosal melanoma? This type of cancer is very rare and very aggressive, so it is so important to see someone that understands it (you will also need to advocate for your husband yourself, since there are not a lot of options in general for this type of cancer). We originally saw a melanoma specialist, but it turns out he specialized in cutaneous melanoma and we were very frustrated with his lack of knowledge of how mucosal differed from cutaneous melanoma.
Also, I'm part of a facebook group just for mucosal melanoma patients and caregivers that has been a great resource and source of information for me. There are several people with nasal mucosal melanoma there if you are interested in speaking to them directly: https://www.facebook.com/groups/906485416088740/
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