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Just diagnosed MM of Maxillary sinus, need help!

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Just diagnosed MM of Maxillary sinus, need help!

Posted By
Maggie.shg@gmail.com
2/28/2020 1:56am
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Replies: 6

Hello everybody!

Just diagnosed MM of Maxillary sinus two days ago.with stage T4aN0M0. Next week to do PET and then operation! Please help me to know what I should consider as regular treatments after operation? Radio therapy & immunotherapy? Any good experience to share? Or anyone has survived in MM over 10 years?

Maggie

Hi Maggie,
Sorry for what you are dealing with. Given what you've shared, I'm not sure what stage you actually are at this point (and it probably won't be really known until after your surgery) but if I were guessing, I'd suspect Stage III. However, that's a lot if supposition on my part. The only reason I even do so is to help give you an idea regarding treatment. If you are certain levels of stage 3 or stage 4, there are approved systemic therapies available. Here is a report I put together that covers basic current melanoma treatments: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melan...

If you are stage 2 your docs will help you set up a routine of monitoring. If you are stage 3 or 4, you will probably start systemic therapy - either targeted (for which you will need to be BRAF positive- the primer explains but it is a test done on your tumor, so you will need to ask your doc about it) or immunotherapy (again, the primer explains). We have learned that while radiation alone is not very effective in melanoma, when combined with systemic therapy, results can be better than either alone. Hope this helps. Ask more questions as you have the need. There are many smart, caring peeps on this board. I wish you my best. Celeste

Thanks Celeste for sharing very useful information! My stage is 4aN0M0 and waiting for surgery in coming week and after that, perhaps radiotherapy... still waiting for oncology doctor further information... will RT+immunotherapy better solution to improving OS rate?

Maggie

Here are a zillion articles/reports on results when radiation is combined with immunotherapy:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radi...

Many talk specifically about brain mets, however we have learned that the information applies to tumors throughout the body. The search bubble on my blog can be helpful if you are interested. celeste

Hi Maggie,

My father was diagnosed with MM of the Right Sinus in 2007 after he had a nose bleed for a couple of months. We were all stunned of course. He was treated at MD Anderson Cancer Center here in Houston had pretty radical endoscopic surgery of his sinus where they removed his septum and took out the lymph nodes from the right side of his neck. Surgery recovery went smoothly and the following weeks he received radiation treatment to the sinus and right neck. At the time he was diagnosed as Stage 3 b/c they did find a few cells in his lymph nodes. Luckily no distant spread. He also received a chemo therapy combo to try and clean up any errant cancer cells.

I would credit the radical surgery, regular monitoring and expert treatments at a major cancer treatment center for my dad's 10+ years of survival since his diagnosis AND! there are more and more options available now than ever before.

Jyc

Thanks Jyc !Very excited to hear your dad in NED over 10 years!

Maggie,

I'm sure you may already know, but mucosal melanoma is a very, very rare form of melanoma (1% of melanomas) so there aren't many doctors that can even say they've ever treated these patients. And it's behavior is different from cutaneous melanoma. So it's of the utmost importance you get treatment from providers who have the most experience and access to the best science and medicine. It was a rocky journey of scans, waiting, appointments, more surgery and even recurrences and a 2nd cancer. I honestly could say I visited this forum everyday for support and education. Also, there's a Facebook support group you can join, just look for "Mucosal Melanoma Warriors".

Jyc