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Update after seeing Melanoma Oncology Specialist and Melanoma Surgical Specialist

Forums Update after seeing Melanoma Oncology Specialist and Melanoma Surgical Specialist

  • Post
    TinkPeriwinkle
    Participant
      So we traveled to Salt Lake to the Huntsman Cancer Institute which we’ve gone to before for his other two cancers. We saw two specialists that only work with Melanoma, an oncologist and a surgeon.

      This is what we were told, some of which I’m sure most of you already are aware of from personal experience, but I’m putting it in the words they told us:

      So, if we do NOTHING he has 6 months or less for a prognosis.

      There are two pills that they want him to take together, Dabrafenib and Trametinib. He’d take them twice a day. The purpose of these pills is to break down the protective barrier of the tumors so the white blood cells can then swoop in and try to do whatever they can do to fight the cancer. It also helps to shrink the tumors a great deal and in some patients make them go away. HOWEVER, this pill is not a long-term solution. Even if they make a tumor go away the tumors will eventually return. The pills typically plateau in effectiveness at round 8 months. And we should know if it’s working within the first 4 weeks or so of initiation. It is said to work in about 80% of patients who carry the B-Raf biomarker (which he does). If it works it could potentially give him up to 1-2 years. Even if the next step doesn’t work. If the pills don’t work then it’s clinical trials from there.

      If the pills work we go to the next step which is to discontinue the pills and go onto a different immunotherapy than what he previously had. The percentage of success for this step is about 30%. So not great odds but it is something. If it works, he can potentially be on it indefinitely for years to come. If not, we’re back to square one and he would then go on some clinical trials (essentially a last ditch effort when nothing else can be done.)

      So basically, everything is dependent on this next month if these pills work or not.

      I have read the replies to my previous post, and thank you SO much to all those that left me some kind and encouraging words. It really means a lot and helps.

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        gopher38
        Participant
          That sounds about right to me. The one quibble I’d have is this:
          “HOWEVER, this pill is not a long-term solution. Even if they make a tumor go away the tumors will eventually return. The pills typically plateau in effectiveness at round 8 months.”
          My understanding that this is generally correct, but it depends how you define “long-term solution”. I believe that there are some people (don’t know percentages, but I think it’s small but non-negligible) who can have years (even many years) of success with the targeted therapy. That said, I’d take anything I say with a grain of salt.
          Anyway, hoping that the targeted therapy is effective, and follow-up combo even more so.
          Bubbles
          Participant
            I am glad your husband saw the specialist. Like Gopher, I agree that data tells the same tale the oncologist shared with you. If you look back in the “primer” I think I posted in the your last post, the targeted therapy your husband has been prescribed works extremely rapidly and well in 80% of BRAF positive patients. (Those are very good odds in melanoma world!!!) I have every expectation they will work well for your husband! The data shows that most people, despite that great response, do develop tumor work around in about 6-9 months. So, I am very glad that your docs have a plan for that, and immunotherapy (probably the ipi/nivo combo) should serve him very well at that point since he will have a diminished tumor burden. Gopher does make a good point. Our own “Richard K” (as well as others on this board) have been maintained very well on targeted therapy for years! SO – in melanoma world we must hope for the best, but always have Plan B in our pockets. I’m very glad that you have several plans currently. I wish you and your husband my best. Celeste
            AMcReader
            Participant
              I’m so happy to hear you met with a melanoma specialist.

              One more option I want to throw out there is the combo that I’m currently on, which is a BRAF/MEK inhibitor (like you had discussed with your oncologist), plus an immunotherapy drug called Atezo (the name continues from there but it’s long and everyone just calls it Atezo). In the best case scenario it provides the best of both worlds…quick response from the braf/MEK inhibitors, plus the hope of a durable response because of the immunotherapy drug Atezo. This combination seems to work in between 70-80% of patients and the median response time is 17 months. So, you’re getting the quick inhibitor response, plus hopefully building up a long-term response with the help of immunotherapy. Current data is showing that about 30% of people’s responses seem to be durable.

              You would still have the option for Ipi/Nivo in your back pocket for if it stops working but this gives you the combination of two great options at once.

              I have not been on this treatment long. I took my first dose of the inhibitors on 9/15 and after 2+ months of pain and barely being able to eats, I woke up on 9/16 feeling almost 100% back to my old self. It felt like a miracle. Again, I’m in the beginning of this treatment, but O think it’s a good option to consider for BRAF+ patients.

              Good luck in your decision making and please keep us posted!

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