Home Forums Melanoma Diagnosis: Stage IV Pleasant Surprises but not quite NED. Yet.

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  • #21978
    buffcody
    Participant

    A couple weeks ago, I mentioned a new tumor to the brain and probable tumors in the intestinal area. Monday I met with the neurosurgeon. Now he and his radiologic colleague believe the “metastatic tumor” on the brain is a radiological/ipi? reaction to the radiation used in the SRS December 2012. I will have another brain MRI in a month or so, but the supposed tumor is in the spot where I received the most radiation in 2012. So very good, though tempered, news!

    The upper endoscopy and the biopsies accompanying showed no melanoma or other cancer. Continuing regular CT scans, particularly because something in the intestine has been lighting up now on PETs for almost 6 months. This can be a very inexact science/art.

    No treatment, local or systemic, for now. I have been free from any treatment or surgery for over a year now after discovery of the original MUP (melanoma unknown primary) in lung and brain two years ago. Not from other problems though. Feeling good now, and I think it’s time to forget the disease for a few weeks at least and get out of town.

    NED does not apply to me yet. How about a new acronym for folks like me. Maybe UED (uncertain evidence of disease)? Someone on the Forum, I’m sure, could come up with a better one.

    Frank

    #64406
    Catherine Poole
    Keymaster

    Wonderful news Frank! So can you go back to swimming? I hope your fabulous immune system continues its crusade.

    #64407
    buffcody
    Participant

    Thanks, Catherine. I am back to the pool and registered for the Michigan Senior Olympics in August. Placing in that one will qualify me for the Nationals the following year in Minneapolis. If I make it to Minnesota, I’ll be in a new age group, 75-79. Time does fly when you’re having fun 😆

    Frank

    #64408
    Brendan
    Participant

    Frank,

    Congratulations on getting back in the pool and your new, unique status (ANED-Almost NED-that’s all I got). Good luck with your next round of scans.

    Brendan

    #64409
    BNP68
    Participant

    Congratulations Frank. That sounds like great news.

    How about NTFMNMS (No Time For Melanoma Now – Must Swim)

    I know it’s terrible. You’d think after 20+ years in the military I’d be good at acronyms.

    Brian

    #64410
    buffcody
    Participant

    Nice try. I figure as long as I can repeat and explain that acronym I won’t need my brain MRIs, saving time and money and ears.

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