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NEW DIAGNOSIS OF MUCOSAL MELANOMA - we are lost -

NEW DIAGNOSIS OF MUCOSAL MELANOMA - we are lost -

Posted By
Angela_2
10/7/2019 2:14am
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Replies: 5

Good evening -
Can anyone please help me find a doctor or who do we talk to for Mucosal Melanoma for my husband. It is a mass that was in his left nasal passage positive for melanoma and his maxillary sinus.

Just diagnosed 2 weeks ago and we HAVE to get another opinion or option. They told us here "we are going to throw this at the wall and see what happens. We are the 6th case for Mucosal Melanoma in this institutes history. WE ARE lost..... This is my soul mate and I am begging everyone to please help, We will go anywhere. do we see melanoma doctors or Radiation oncologists? We have already received 1 dose of Keytruda last week. Surgery first week they found the mass in his nose... now they want to just drill bone out of his sinus cavity and then radiation - we asked about proton therapy and no one will tell us advanced or no? They honestly don't know what to do....... This is hurting so much. Im so scared. We just found each other, got married, buried a parent, taking care of my 95 year old grandmother now and we are hit with this scary unknown rare heartwrenching news..... we thought it was a sinus infection. Im so sad. WE have had all the imaging adn need to find someone FAST to see - how do we get in? I looked up Dana Faber, U PENN has amazing oncology doctors wow, and MD Anderson. But WHO is the question and how. PLEASE HELP us - with all my heart. I need any advice you can provide and I am so happy I found this site which is actively assisting fellow friends supporting each other - you all are so amazing. I hope we can become friends! and fight this C and find our journey together.....
Angela

:) thank you

Hi Angela,

Welcome (though we wish it were for a better reason). Though I don't have experience with mucosal melanoma, I didn't want your message to just hang here (it's sometimes quiet on the weekends). I'll reiterate what many have said to those who are in a similar situation (i.e., doctor doesn't have enough experience), which is get to a specialist. This is what it looks like you're trying to do. If you haven't checked out this map on the site, these are the places that have specialists in mucosal melanoma, so that's where you want to go -- the closest specialist in that closest to your home. Here's the map: https://melanoma.org/legacy/understand-melanoma/melanoma-treatment/treat... This is a good place to ask questions, but I bet there are others out there that know more about mucosal melanoma resources and they'll chime in soon. Take care, and our thoughts are with you. Feel free to post any questions.

Stage 1A excised, keeping an eye on another; multiple dyslpastic nevi.

This is a scary journey, but lots of people are here to help! I echo what was said about getting to a melanoma specialist. If you can get to one located in a large research facility .....even better, since they have access to many clinical trials. MD Anderson (and God) has kept me alive the last 3 year's. There are some other great places, too. Search here for the packet Bubbles has put together for new patients. There is hope!

Hello Angela,

Sorry that you and your husband are dealing with so much. Melanoma is a very scary diagnosis! My tag phrase is that no matter who you are, melanoma sucks great big green hairy stinky wizard balls!!! Additionally, it plunges the patient and those who care for them into a foreign land and language that seems insurmountable! To that end, perhaps these posts will help.

This is a "primer" on basic melanoma treatments. There is a link to a post filled with acronyms and their definitions at the bottom of it: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melan...

I have answered this question often, so your quest spurred me to put this post together today. It is a listing (not absolutely complete by any means...so others may well chime in with additional excellent suggestions) of the top melanoma specialists across the globe: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/10/intern...

Now, as you may have begun to realize, while melanoma sucks, ocular and mucosal melanoma can be even more challenging to treat. HOWEVER, you are not without HOPE!!!!!!!! Here is a smattering of posts about mucosal melanoma I have put up over the years, if you are interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=muco...

Melanoma is hard. It is hard on the patient and their loved ones. But, I promise you do have reason to hope. I was diagnosed with Stage IIIb melanoma in 2003 when no valid melanoma treatments even existed. I progressed to Stage IV with lung and brain mets in 2010. But, I was lucky to gain access to an immunotherapy trial and after 2 1/2 years of nivo (Opdivo), with my last dose in June of 2013, I remain free of melanoma today. Since 2011 the landscape of treatment options for melanoma patients has changed dramatically for the better. Your husband is lucky to have you. Hang in there. Ask more questions as you have the need. There are many caring, knowledgeable peeps on this forum. I wish you both my best, Celeste

PS There are many agencies who assist with travel expenses and funding for cancer patients seeking care. I have posted it before and will try to find it. Perhaps others will repost. c

If you are on Facebook, there is a group Mucosal Melanoma Warriors, with alot of information on treatments and support. My sister had Mucosal melanoma, she passed away but from a brain aneurysm not the melanoma.

hi. i am now being seen at Winship Cancer Center at Emory University Hospital in Atlanta, GA. i have been very pleased with their care. they have mel specialists and they are a proton therapy center. when you call them, they will match your husband with the correct specialist. here is the link for them: winshipcancer.emory.edu Hang in there! Keep up the fight!

Cindy Lou

Stage 3C resected; Primary cheek 1.9 ulcerated Clark lvl IV WLE neg SNB 7/2015; Satellite met cheek WLE 3/2016; Mets sentinel nodes SND & Parotidectomy 10/2018; 12 treatments Opdivo disc. in May 19; surgery mets in neck 9/19