Anyone experience Zelboraf failure?
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Anyone experience Zelboraf failure?

› Forums › Cutaneous Melanoma Community › Anyone experience Zelboraf failure?

  • Post
    • October 23, 2013 at 5:49 am
    arthurjedi007
    Participant

      I've been on Zelboraf for 8 weeks. The full dose 8 pills a day. I just had my first PET scan since starting it and everything is pretty much the same which is lots of cancer in my bones of either the same or a little worse intensity. Anyone else experience this bad Zelboraf result? My doctor is trying to figure out what to do next. According to the biopsy of my t10 vertebrae I'm BRAF V600E. The first PET scan done shortly after starting radiation showed cancer in several bones but nowhere else. They did pallative radiation of that area which the second PET scan showed a 20% shrinkage but growth in other tumors during those 6 weeks that weren't part of the radiation but still the same bones and nowhere else. Then they put me on zelboraf but this 3rd PET scan has no shrinkage and a little growth plus 2 skin cancer spots. My white blood cells were great everywhere except the one for the bones. Now they are less everywhere. The doctor was quite surprised with the PET results because this only happens like 10% of the time he said. Any advice would be appreciated on how to best beat this cancer. I believe they will probably start me on ipilimumab or maybe the trial that combines that with nivolumab since my doctor is part of that. I'm starting to be concerned if their biopsy was correct. Anyone have a biopsy diagnosed melanoma but it is some other type of cancer? As far as Zelboraf symptoms I've had about a dozen or more. The most noticable is the rash from neck to ankles which is slowly going away. Also a couple cancer spots appeared on my skin and PET scan although I've stayed mostly out of the sun and had the uv clothing and stuff on. Not sure what type they are but one is believe to be the squamish. Also my hemroids have starting bleeding way more than ever and may be more to it so getting a colonoscopy. Also my left side hurts quite a lot but nothing showed on the PET/CT scan. Dunno what else to say. I'm quite at a loss expecting the good results the doctor expected only to have gone through all this with no shrinkage.

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        • October 23, 2013 at 2:38 pm
        Mat
        Participant

          Arthur, sorry to hear about your results.  I'm on the GSK combo–Tafinlar and Mekinist.  I too have bone lesions (just a few).  At 8 weeks, my scans showed improvment in the bone lesions (among other tumors).  As you're discussing/evaluating options, and assuming confirmation of BRAF, you might raise this with your doctor.

            • November 6, 2013 at 9:38 pm
            arthurjedi007
            Participant

              Thanks. It looks like there are at least 4 trials with the combo of Tafinlar and Mekinist that I could have maybe been in. But since I took Zelboraf I'm excluded from all of them. Today I talked to my doctor and he is planning to switch me to Yervoy only. He is hoping the Tafinlar/Mekinist combo gets FDA approved early next year.

              • November 6, 2013 at 9:38 pm
              arthurjedi007
              Participant

                Thanks. It looks like there are at least 4 trials with the combo of Tafinlar and Mekinist that I could have maybe been in. But since I took Zelboraf I'm excluded from all of them. Today I talked to my doctor and he is planning to switch me to Yervoy only. He is hoping the Tafinlar/Mekinist combo gets FDA approved early next year.

                • November 6, 2013 at 9:38 pm
                arthurjedi007
                Participant

                  Thanks. It looks like there are at least 4 trials with the combo of Tafinlar and Mekinist that I could have maybe been in. But since I took Zelboraf I'm excluded from all of them. Today I talked to my doctor and he is planning to switch me to Yervoy only. He is hoping the Tafinlar/Mekinist combo gets FDA approved early next year.

                • October 23, 2013 at 2:38 pm
                Mat
                Participant

                  Arthur, sorry to hear about your results.  I'm on the GSK combo–Tafinlar and Mekinist.  I too have bone lesions (just a few).  At 8 weeks, my scans showed improvment in the bone lesions (among other tumors).  As you're discussing/evaluating options, and assuming confirmation of BRAF, you might raise this with your doctor.

                  • October 23, 2013 at 2:38 pm
                  Mat
                  Participant

                    Arthur, sorry to hear about your results.  I'm on the GSK combo–Tafinlar and Mekinist.  I too have bone lesions (just a few).  At 8 weeks, my scans showed improvment in the bone lesions (among other tumors).  As you're discussing/evaluating options, and assuming confirmation of BRAF, you might raise this with your doctor.

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