Home Forums Melanoma Diagnosis: Stage IV Good News! BRAF + Radiation

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  • #21155
    odonoghue80
    Participant

    Hi there, I just want to share some good news. After CT scans, PET scans, & brain MRI in December ’12 showed an incredible and scary amount of disease (spread to most organs including one brain met) I used this site to learn and share experiences about the challenges of melanoma. Many people were of great help and it’s been therapeutic to share my story at times also. Most recently scans this week showed many of the tumors have disappeared and only a couple small, less than 1cm, tumors remain. The brain met is completely gone and my doctor was so impressed with the images. I’m just left with a hole in my head now! But the last few months were extremely difficult. I ended up in hospital twice for about 3 nights each time, lost tons of weight, had cardiac fluid buildup that left me having a hard time breathing. There was severe nausea, body aches, the list goes on. However the last month to 6 weeks I’ve been improving daily. The combination of BRAF drug Zelboraf and the stereotactic radiosurgery are working for now! I’ve gotten active again and do yoga almost daily. Able to go out, meet friends socially, go to games, etc. I’ve added 16 pounds back on since February. Things are looking up. Just want to say thanks to this community for being there when I needed it most and when I’ll need it again. Keep on fighting!

    #59895
    Sandalwood36
    Participant

    This is such awesome news! Congrats and never stop fighting! You are a true inspiration!

    #59896
    Catherine Poole
    Keymaster

    Wonderful news! Thank you for sharing with us.

    #59897
    lizliz
    Participant

    You are a well seasoned Melanoma Warrier! Thanks for sharing this wonderfully upbeat post.

    #59898
    Anonymous
    Guest

    Outstanding!!! I’d say you must feel like a weight has been lifted but you’re trying to put weight back on. 😆

    “The combination of BRAF drug Zelboraf and the stereotactic radiosurgery are working for now!”. Yup and it’s sweet. However, IPI may have been a contributor too as it can take months for it to kick in. In fact, you may want to consider an IPI reinduction but, of course talk it over with your med team. Kick that disease while it’s down!

    Also keep TIL on the table, especially now that the brain met is MIA, though, ironically, you may not have enough disease now to qualify for NCI’s TIL. You should have such ironies ;) . And there’s PD1.

    I’ll beat the hope drum again, it’s wonderful to have real choices and options theses days thanks to dedicated researchers and staff doing God’s work everyday.

    But take a break, relax and Enjoy the Gift.

    Jeff

    #59899
    erinmay22
    Participant

    yay!!!! So glad to hear the news! Been thinking about you!

    #59900
    Dick_K
    Participant

    Super! Best of luck.

    Dick

    #59901
    odonoghue80
    Participant

    Thanks again guys & gals. I am keeping on top of additional therapies and options. I recently went to MD Anderson for a consultation and they agreed with my onc at Univ of Chicago to continue on this course. I’m most interested in TIL at this point if its possible. But hopefully Zelboraf works for me for a long time!

    #59902
    kylez
    Participant

    Congrats on the great response! It’s so great to feel better.

    I asked my neurosurgeon about the holes in my head, like what are they filled with, air? He said, no, cerebrospinal fluid. I’ve thought about that one quite a bit.

    Regarding TIL and MDA, here’s a presentation video w/Patrick Hwu about the latest in their TIL work (talk was in March). He said they are seeing even stronger TIL infiltration in mice when combining BRAF inhibitor with TIL (also when combining anti-PD1 with TIL). Like you I also am very interested in TIL as a plan B or C. But in my case MDA said they don’t really harvest TIL from brain mets, at least as of Sept. 2011 when I made my trip there to ask/get a second opinion.

    Video here: http://www.healio.com/hematology-oncology/hemonc-today-melanoma/adoptive-t-cell-transfer” class=”bbcode_url”>http://www.healio.com/hematology-oncology/hemonc-today-melanoma/adoptive-t-cell-transfer

    #59903
    Cecelia
    Participant

    I just want to add my congrats! That miraculous combo of returning weight and returning energy must feel absolutely wonderful. So nice to hear that you are able to get out and about while on zelboraf–enjoy the spring (still not quite here in Canada).

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