Surgery - pperry

Procedure or Surgery Associated with Malignant Melanoma, Nasal Cavity. Posted on April 2, 2013 View this journey (1 Experience)

dec 2012 I was dignosed with melanoma stu left nostril, they did a flap said they got it all, 1 year later scar tissue in my nose started growing, was dignosed with recurring melanoma it was in my maxillary sinus and went into infraorbital nerve stage 2 I had surgery on 3-11-2013 think they got it all the left side of my face is very scared . now they want me to do radiation -the chemo pill and I was also told they have a newer treatment that is working for others will see the dr friday to set all this up. whats this new treatment does anybody know is there anybody out there thats had it on there face?

Went as Expected: Strongly Agree
Minimal Recovery: Neutral/NA
Minimal Side Effects: Neutral/NA
Minimal Impact to Daily Life: Disagree
1 Comment
  • jdub54's Avatar
    jdub54

    I'm currently playing "lucky dog", caught mine after just 5 nose bleeds, R side about where my glasses hit. 11 days to diagnosis, intranasal surgery 17 days after diagnosis (skilled surgeon avoided the standard of care, a facial "degloving"), radiation for 33 rounds, no chemo. One lung met suspected 6 months after first surgery, excised 4 months later. Now 3yr 3 mo NED. GO FIGURE! Verrry atypical.

    The coming drugs re-activate a section of the immune system that was either naturally low in the patient (allowing the mutation to take hold), or that the melanoma helped deactivate. When I posed a question about autoimmune conditions and their connection to my unexpected wellness, I was told they indicated a naturally hyper system, and autoimmune diseases are correlated to better outcomes. In fact, the new drugs will actually CAUSE autoimmune responses (such as my pre-existing Hashimoto's Hypothyroid).

    The key for us with any mucosal melanoma is early diagnosis (difficult since they are internal and rare), early removal, radiation still seems to keep initial site recurrence from happening, and then RIGID FREQUENT SCANS AND MONITORING. I go 1/4ly, alternate between CTs and PETs.

    Hang in there, pperry; I know your damage from curative surgery for the metastasis is WAAAY worse than my minimally invasive lung surgery was. I'm sad to hear the recurrence was in such close proximity to your origin site.
    I am not yet up to speed on the names for the new drugs, but I know they are in various stages of trials. I don't have any info on success rates, your oncologist ought to be able to help answer these questions. Make him respond, you deserve the best care, and have the right to make informed decisions about which drugs or trials you will be best served by.......You're in my thoughts.....
    jdub54

    almost 8 years ago

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