Home Forums Melanoma: Stage III Amazing News!!

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    Hi everyone,

    I haven’t been posting for a while, but do drop by to read how everyone’s doing.

    I read here that someone re-tested positive for BRAF, so i figured that I had no idea when my mel was tested, i.e. what it from my first slides, was it from my recurrence? So I asked Dr. Wolchok of I could be re-tested…bottom line is that I am BRAF positive! When he called me last night, I burst out in tears on the phone, and I was hiding in a corner while I was working!

    I’m going Monday for some bloodwork and a meeting with Dr. W’s nurse to learn the drill on Zel, which I’ll be starting when it comes in the mail. Yipee!!!!!!!!

    Also, as some of you know, I am Stage III unresectable. And until it went into my ear canal recently, my mel has been metetastic cutaneous. I’m on a DPCP trial at Rockefeller University Hospital. I was there this morning for a biopsy, and they decided that for MY benefit, because it won’t benefit the trial anymore, I can remain on the DPCP. So we’ll be hitting the mel with a double-whammy.

    I’m worried about side-effects, but having been through Ipi-induced colitis, adrenal insufficiency, and IL-2, I can probably tolerate whatever comes my way. I just hope that nothing will cause me to have to stop it. But, we’ll cross that bridge when we come to it.

    To whoever first posted about re-testing, THANK YOU, THANK YOU, THANK YOU!

    I’ll keep you posted.

    Happy holidays to all,




    Mary Sue (msue) has a similar situation. Unfortunately, she progressed to Stage IV, but she did recently test BRAF+ after an initial negative test result. Check out her post in the Stage IV forum.

    I saw your post on the MRF forum and I can’t express in words how happy I am for you. :mrgreen: :mrgreen: :mrgreen: To quote another friend, “Beat the Beast!”

    Shirley Z

    Great news Karen! It proves true what we discuss so often on here about the patient being their own best advocate. Good for you for asking to be retested.

    Shirley Z



    I am so glad my situation had a positive impact on you. I hope everyone that was tested negative gets retested when the need arises. I was surprised my insurance didn’t have a problem with being retested. Hopefully others will see this and it will benefit them.

    Mary Sue

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