Mucosal Melanoma Survivors, How long since your diagnosis?

This topic has 6 replies, 6 voices, and was last updated 4 years, 1 month ago by [email protected].

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- January 5, 2018 at 9:54 pm
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RTP
Participant
My wife, 42 years old, was diagnosed with mucosal melanoma in the nasal passage 4/2017. We caught it early, she had two surgeries(2nd was to clear margins). Then, to be agressive, as preventive, she had 30 rounds/6weeks IMRT(radiation) then 4(21 day) rounds of chemo(cisplatin & temador). Surgery and radiation was at MD Anderson, chemo was prescribed by MDA, but administered in SC.

Most statics show a 5 year survival at 20-30%, How long have you been fighting with MM?

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- - January 6, 2018 at 4:31 am
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  Cindyco
  Participant
  https://www.facebook.com/groups/906485416088740/
  
  This is a good Facebook support group with other mucosal melanoma patients and caregivers. Some survivors are many years out. Because you guys caught it early and are staying educated, you guys have a lot of hope right now. Stay up to date and aggressive with scans.
  - December 26, 2018 at 3:42 pm
    
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    Tory2
    Participant
    
    As you can see from published results, for example in this Mucosal melanoma of the head and neck article, there are long time survivors. New treatments offer a lot of hope, as said before. Stay strong
- - January 6, 2018 at 8:15 pm
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  Becky
  Participant
  My son was dx with oral melanoma ( tongue) in 2009. It had spread to one lymph node. He did a year of interferon which was all that was offered at the time. He had just turned 21 and now he is 29 and healthy! Hope that gives you hope..I read all the same scary statistics as you
  
  Becky
  - January 10, 2018 at 10:37 pm
    
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    Joannxbuc
    Participant
    
    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
  - September 15, 2019 at 7:11 pm
    
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    Nirmita
    Participant
    
    I am an 11 year survivor.
    I was diagnosed with nasal mucosal melanoma in July 2008 at age 37.
    I will be 48 years old this September 2019.
  - February 27, 2020 at 2:10 pm
    
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    [email protected]
    Participant
    
    May I ask what kind of treatment you did before and which stage you were?
    
    Thanks,
    
    Maggie