• Vemurafenib Question

    Asked by Dick_K on Saturday, July 27, 2019

    Vemurafenib Question

    I haven’t been around much, apologies. Gardening is a passion of mine and I’ve been spending a lot of time at it, we even hosted our first garden tour in over ten years. But, I’m looking for some guidance.

    In March 2010 I started in a phase 2 clinical trial of what would become vemurafenib, Zelboraf. That was followed by a follow on study that I still participate in. In December 2010 my PET/CT scans stopped showing any hypermetabolic activity and the two lung tumors that show on CT, stopped shrinking in February 2012. Ever since February 2012 the tumors have not changed and my doctor believes what shows on the scans could be scar tissue.

    We are now contemplating stopping medication. I’m looking for any comments from others that have been on vemurafenib and stopped due to being NED.

    3 Answers from the Community

    • LisaR's Avatar
      LisaR

      I can't answer that question, but wanted to say I love gardening too! I have some beautiful plants this year and I enjoy sitting on the patio just watching the hummingbirds and looking at our garden. I hope your study/trial is doing well for you.

      4 months ago
    • SandiA's Avatar
      SandiA

      Hi! I was on a clinical trial for stage 4 melanoma. I took yervoy and opdivo. I stopped about three ago. I mainly stopped due to side effects but I was currently NED at the time too. Like you I had and still have some nodules on my lungs and a spot on my liver they feel is not active melanoma. They have remained stable this whole time so they think they may be scar tissue. I have to be honest I was very nervous about stopping treatment, but in my case the side effects were pretty severe and they didn’t give me much choice. But it’s been three years and still doing well. Let us know what you decide and how it goes. I am glad you are gardening. My husband and I are big baseball fans and we get caught up with baseball games over the summer and don’t seem to get to much done. Haha! But it’s fun to have something you enjoy!

      4 months ago
    • Dick_K's Avatar
      Dick_K

      Well I pulled the plug, I am no longer taking vemurafenib. My doctor is very certain that what shows on the scans is scar tissue, so sure, they do not do biopsies in similar cases to confirm any more.

      I’ve been very lucky with the long term results and tolerance I’ve had. There is a risk of developing drug resistance. If having stopped and there is a recurrence I can go back on the drug. If I stayed and it became resistant, I would need to find another drug.

      I will continue with a schedule of three month checkups with her as well as three month full derm exams. Also, for the first year, scans very three months instead of the current six month scan schedule.

      4 months ago

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