• Is there. Anyone out there taking Zelboraf for Melanoma? If you wouldn't mind letting me know how you are doing with it

    Asked by Kellie_T on Thursday, January 26, 2012

    Is there. Anyone out there taking Zelboraf for Melanoma? If you wouldn't mind letting me know how you are doing with it

    6 Answers from the Community

    6 answers
    • ScrappysWife's Avatar

      Hi Kellie,
      I'm not sure how many will answer, but I can tell you that there are quite a few people doing the Zelboraf. My husband is B-RAF negative. However, from most people I have heard that sensitivity to sunlight and mild rash seems to be common. If you would like more specific medical info on Mel try going to the melanoma resource foundation website. Many there are doing it, and they can give you more info.

      Best wishes to you...


      over 6 years ago
    • pglurie's Avatar

      I am also interested in how you are doing. What stage are you? I am not getting any treatment and my doctor poopoo the BRaf suggestion. Am I missing something? My tumor was not tested. I am Stage 3 b.

      over 6 years ago
    • ScrappysWife's Avatar

      The drug used to treat those with the B-RAF mutation has not been approved for Stage III disease. Yervoy (the other wonder drug approved in 2011 for mel) is in a 2 arm clinical trial vs interferon for stage III, but you would have to contact a facility that offers it. If you go to www.clinicaltrials.gov and search for melanoma and stage III it will also list other trial options. Unfortunately, Interferon is still the only approved treatment for stage II/III. If I were you, I would look into the vaccine trials (i.e. ESO, Mage) or an anti-pd1 (such as CT-011, or any of the MDX trials).
      Best wishes!

      over 6 years ago
    • bjsimme's Avatar

      I have been taking Zelboraf since the end of March 2012, I saw major improvements within 6 days and it usually takes 6 weeks. I have lost body hair and some hair in brush but you can't really tell I have thick hair on my head. I am a 50 year old female I have also gained some energy back, but I am fighting with Musclar Dystorpy also, so my joints ached anyway didn't notice any difference when taking ZELBORAF. Dr just called today blood low need 2 pints, I have been fighting since July 2010. I am on a walker full time now also. Hope this helps with your decision. [email redacted]

      almost 6 years ago
    • Cricket's Avatar

      I have been on Zelboraf for a little over two months now. I take 8 pills a day. The team I see at the University of Colorado said that because I was in good health and young (45) they didn't think the side effect would be too bad other than the sun sensitivity, but I actually experienced most of the common side effect during the first month. They were so concerned that they pushed up my MRI by two weeks to see if it actually was working. Which thankfully it was. My melanoma is in my Brain and was reduced about 30% the first two weeks and now at 8 weeks it in down to about 50%.
      Most of my side effect have lessened. I am still very tired and have not gone back to work. I am still losing my hair, but I had a lot to begin with so it is not that noticeable to others. My nausea is almost gone, but I have a med to help me with that. I take prednisone to take away the pain I had from the skin rashes.

      almost 6 years ago
    • sugarbear's Avatar

      i have been on zelboraf for almost two months -when i started it ,i had lumps all over my trunk ,under my armmpits and on my arms -within 1 week of being on zelboraf ,the lumps were mostly gone!this drug is crazy priced and weve had to fight insurance but the people that make the drug have a coupon that can help with the cost -just go to genentech.com and answer a few questions -its worth your time-as far as side effects -i have pretty bad joint pain and my skin feels like a lizard -my face mainly =but i havent had nausea or heart issues so i guess im lucky
      hope this helps

      over 5 years ago

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