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My TAFINLAR (braf) + MEK dosage story

Forums General Melanoma Community My TAFINLAR (braf) + MEK dosage story

  • Post
    ad2424
    Participant

      I am sharing my experience of reduced dosage and then every other day reduced dosage in the hope that it helps others.

      A brief history. Melanoma found around 20 years ago through mole on back. Excised. No treatment. 2011 another mole was melanoma. Lung nodules. VAT lung surgery. IL2. Numerous small lung nodules grew extremely slowly and all under 1 mm through 2013. September 2013 2 small brain mets (.2 & .3). Gamma November 2013 worked on those two. January 2014 two more small mets. Gamma February 2014 due to growth of those.

      Started TAFINLAR + MEKINIST February 2014 to combat brain and lungs (which since November had grown where now 2 were >1 mm.

      For the first 50 days I needed 4 breaks due to shakes and loss of appetite. At that point daily Tafinlar dose was lowered from 300 to 200. By day 75 still having side effects so changed to every other day. Now almost 6 months in still getting results on a reduced, every other day dose.

      April brain scan shows significant resolution or non visible mets.

      May chest scan shows mets reduced 70%. Dose reduced and then changed to every other day.

      July brain shows continued resolution.

      August chest shows further 15% reduction.

      My message is that not every person must follow the norm. I had a difficult time accepting from my doctor that this was a reasonable dose. I was scared that the low amount of medicine would not work. Turns out she was right.

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        imnxcguy
        Participant

          Congrats on your improvement. I'm also on the Tafinlar + Mekinist program. Started at 300mg originally in January 2015 for Tafinlar, 2 mg daily. Reduced down to 225/1.5 daily after a few months because of high fevers, etc. Now, I'm on a regular schedule of fevers every two weeks (10 days good, 4-5 days bad), where I have to cycle off the medication for 2-3 days, essentially twice a month.

          I'm curious as to whether going to an every other day regimen would be advantageous to me, and keep me from losing out on life for almost a third of every month. Is the every other day medicine still working for you?

          Mark

          imnxcguy
          Participant

            Congrats on your improvement. I'm also on the Tafinlar + Mekinist program. Started at 300mg originally in January 2015 for Tafinlar, 2 mg daily. Reduced down to 225/1.5 daily after a few months because of high fevers, etc. Now, I'm on a regular schedule of fevers every two weeks (10 days good, 4-5 days bad), where I have to cycle off the medication for 2-3 days, essentially twice a month.

            I'm curious as to whether going to an every other day regimen would be advantageous to me, and keep me from losing out on life for almost a third of every month. Is the every other day medicine still working for you?

            Mark

            imnxcguy
            Participant

              Congrats on your improvement. I'm also on the Tafinlar + Mekinist program. Started at 300mg originally in January 2015 for Tafinlar, 2 mg daily. Reduced down to 225/1.5 daily after a few months because of high fevers, etc. Now, I'm on a regular schedule of fevers every two weeks (10 days good, 4-5 days bad), where I have to cycle off the medication for 2-3 days, essentially twice a month.

              I'm curious as to whether going to an every other day regimen would be advantageous to me, and keep me from losing out on life for almost a third of every month. Is the every other day medicine still working for you?

              Mark

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