Home Forums Melanoma: Stage III Amazing News!!

  • This topic is empty.
Viewing 4 posts - 1 through 4 (of 4 total)
  • Author
    Posts
  • #20851
    NYKaren
    Participant

    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,

    Karen

    #58046
    Linny
    Participant

    Karen,

    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!”

    #58047
    Shirley Z
    Participant

    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

    #58048
    msue5
    Participant

    Karen

    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

Viewing 4 posts - 1 through 4 (of 4 total)
  • The forum ‘Melanoma: Stage III’ is closed to new topics and replies.