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Taf/Mek long term user
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Taf/Mek long term user

› Forums › General Melanoma Community › Taf/Mek long term user

  • Post
    • March 10, 2017 at 9:19 pm
    mom3girlsFL
    Participant

      Hi Friends!

      Longtime member, frequent lurker…sadly, not much of a poster.

       

      I have been on this forum since (roughly) 2003. There have been many people here who I've been blessed to journey with and many more who I've been able to learn from. There have been times when I've  "stepped away", sometimes because it can be so overwhelming, and sometimes because of battles being lost by the most courageous warriors. I am so grateful to you all who continue to regularly post and update and share information.

      With so many current stories of people battling-people who you cant help but love,  I thought maybe my past year (year and a half) could offer optimism and hope.

      2003 stage 1.  2010 groin dissection, start interferon…later 2010 fail interferon, inguinal node surgery. Clear scans, watch and wait. 2015 stage 4 lung, retroperinoteal lymph nodes, para-aortic lymph nodes.

      Started Taf/Mek combo-cant remember if we were into 2016 by this time.  Immediate responder! It hasn't  been easy, have changed dosing, switched to zelboraf/cotellic (was bad!), took only taf for a while, have had a couple med "vacations"…currently full dose.

      So far 3 scans (last one December) have shown no recurrence. I continue to try and stay cautiously optimistic about the future knowing, statisically, things can change.

      Dont know if anyone else here has been on T/M this long as well?

      Anyway, much love to all!

      Laurie

       

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    • Replies
        • March 11, 2017 at 2:48 am
        UBContributor
        Participant

          thank you for sharing! your case offeres so much hope . 

          • March 13, 2017 at 1:22 pm
          marta010
          Participant

            Hi Laurie – my husband has been on varying doses of Tafinlar/MEK since Sept 2013.  He had an initial reduction in tumor load and was stable – never NED – until March of 2016.  He's been on 3/4 dose of Tafinlar as a single agent as he had too many side effects with the combo.  Transitioned to Keytruda and tolerated 7 infusions, all the while continued to take Tafinlar as a second line of defense.  He finally showed a response in Feb 2017 – waiting until his next scans in May to see if his tumors continue to shrink and, if so, his oncologist may decrease or stop the Tafinlar.  I hope you continue to see a good response.  Take care.

            Ann

            • September 21, 2017 at 1:07 pm
            uccio2014
            Participant

              Here my wife experience, if can help

              surgey on jul 2013

              stage IV on agust 2014 (multiple metastasis sites)

              On zelboraf from august with quick stable response

              Brian metastasis on jul 2015 body stable

              WBR

              on anti -braf+ anti-mek from october 15

              At now stable (the size of all the meet are really small and both RMN for brain and TAC for body cannot assure if it are metastasis or dead cells

              sorry for my english 🙂

               

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