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Taf/Mek

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  • Post
    • April 21, 2018 at 12:10 pm
    Nell
    Participant

      I have been on Keytruda with excellent results until recently. The melanoma has returned to both lungs, and I had internal bleeding/anemia. I am now back on Tafinlar/Mekinist…I took this medication in 2015 and struggled with high fevers. I was wondering if anyone has a success story to share with me about these meds..or any hints about how to deal with the side effects. .I am discouraged right now….Also, Ivam wondering if I will ever be a candidate for immunotherapy again??? Thank you for the help. 

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        • April 21, 2018 at 5:51 pm
        MC1R
        Participant

          I do have a success story with Taf/Mek to share. The short version is that I went from 3b to stage 4 with 2 brain mets. I had gamma knife and started taking Taf/Mek.   Both brain mets resolved in 6 months and I continued on Taf/Mek for a total of 2 years. I had intermittent fevers/chills episodes especially during the first year. My approach was to immediately stop the Tafinlar until the fevers resolved. I continued on the Mek the whole time though.  I was usually back to normal within 3 or 4 days.

          Just FYI, a new combination of BRAFi is hopefully going to be FDA approved by June 30th  My doctor told me that this combo has had excellent trial results and a lower side effect profile. 

          Good luck to you –

           

            • April 22, 2018 at 4:17 pm
            ed williams
            Participant

              Look up Columbus trial melanoma for new combination.

              • April 22, 2018 at 9:07 pm
              Nell
              Participant

                Thank you so much for the encouragement! I am  lying flat with fever and chills and wondering if this will happen all the time. When I was on it in 2015 I think it was several months before the fevers started. This time I have only been on it 10 days. Your message really gave me hope. Thank you. 

              • April 23, 2018 at 12:18 pm
              marta010
              Participant

                Hi Nell – my husband has been on Tafinlar for 5 years with mostly stable results except for a couple of brain mets.  He had a terrible time with fevers early on and is on a reduced 3/4 dose.  He takes 2 pills in the morning and one at night – was never able to tolerate Mekinist so hasn't taken that since the early days.  Hope you find a dosing schedule that works and eliminates the fevers.  Take care.

                Ann

                  • April 27, 2018 at 11:43 pm
                  sofistef
                  Participant

                    Hi Ann, did your husband develop brain met while on the combo and he was able to continue? How were the met treated? I'm on the combo for almost 4 years with no side effects and stable scans until today when to small mets showed up on the MRI! We are teriffied!

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