Brain MRI Results and starting Vemurafenib + MEK

› Forums › General Melanoma Community › Brain MRI Results and starting Vemurafenib + MEK

  • Post
    • July 11, 2015 at 1:14 pm
    Rita and Charles
    Participant

      My husband Charles' brain mri came back with NO mets!  Yahooo!  After meeting with a melanoma specialist and our oncologist, Charles has opted to start with a BRAF targeted therapy rather than immunology. 

      A little background, 15 years ago he was in a horrendous accident – broke most everything, collapsed lungs, spleen out, hip, leg, ribs, shoulder blade – so lucky to be alive.  Broken back pain has haunted him through the years, plus his hip……..he lives with pain.  To look at him you wouldn't know – but everything seems to hurt.  

      For the past year he has hurt more than ever. now I wonder if that was any warning signs. He also developed these "mystery spots" that no doctor was able to figure out – rash, itchy over his legs, chest, arms – really bad at times and truly his legs – wow!  He had his derm biopsy the spots, we went to a rheumotologist……….no one could figure it out. ANA titer through the roof……..what finally helped the spots was prednisone and he has been on and off it for the last 5 months or so.

      The past two months have been overwhelming – he is not the normally positive guy, I am that part of the relationsip. He battles with depresson as well as pain. 

      So…………we start with BRAF + MEK for lung tumor and subcarinal lymph nodes……..we opted not to surgically remove all the lymph nodes and the mid lobe.  He wanted to keep off the table as long as he could.  

      Strength wise, and because of the spots, we are not doing Nivo first…………..

      So here we are.  I am terrified that we are making the wrong choice – but who knows?  I read about Keytruda and wonder if that is better than the BRAF + MEK………….but knowing him, the targeted therapy to show some quick results , get his spirits up, make him feel better. 

      Its a crap shoot I guess?

      If anyone has any good results going with BRAF + MEK – please share. As well as any side effects he might have………plus how you took the pills. 

      Thank you!

      Rita

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    • Replies
        • July 12, 2015 at 1:50 am
        Patina
        Participant

          Congratulations on the MRI.  That's great news!

          • July 12, 2015 at 1:50 am
          Patina
          Participant

            Congratulations on the MRI.  That's great news!

            • July 12, 2015 at 1:50 am
            Patina
            Participant

              Congratulations on the MRI.  That's great news!

              • July 12, 2015 at 5:11 pm
              kylez
              Participant

                Congratulations on his good MRI. I hope he's able to start feeling better, and soon.

                The way I think of settling on a treatment plan with my oncologist, is that I want my oncologist to be a really good odds-maker. Also, I know there's a lot of stress at the beginning of a new treatment because you have no way of know whether it's going to give the results you're looking for. I remember someone here saying once you've put in place the best treatment choice you can come up with, try not to spend too much time second-guessing it, and see how the results are before re-thinking it too much. That sounded to me like a good suggestion.  

                Kyle

                 

                • July 12, 2015 at 5:11 pm
                kylez
                Participant

                  Congratulations on his good MRI. I hope he's able to start feeling better, and soon.

                  The way I think of settling on a treatment plan with my oncologist, is that I want my oncologist to be a really good odds-maker. Also, I know there's a lot of stress at the beginning of a new treatment because you have no way of know whether it's going to give the results you're looking for. I remember someone here saying once you've put in place the best treatment choice you can come up with, try not to spend too much time second-guessing it, and see how the results are before re-thinking it too much. That sounded to me like a good suggestion.  

                  Kyle

                   

                  • July 12, 2015 at 5:11 pm
                  kylez
                  Participant

                    Congratulations on his good MRI. I hope he's able to start feeling better, and soon.

                    The way I think of settling on a treatment plan with my oncologist, is that I want my oncologist to be a really good odds-maker. Also, I know there's a lot of stress at the beginning of a new treatment because you have no way of know whether it's going to give the results you're looking for. I remember someone here saying once you've put in place the best treatment choice you can come up with, try not to spend too much time second-guessing it, and see how the results are before re-thinking it too much. That sounded to me like a good suggestion.  

                    Kyle

                     

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