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brain mets while on PLX 4032???
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brain mets while on PLX 4032???

› Forums › General Melanoma Community › brain mets while on PLX 4032???

  • Post
    • February 22, 2011 at 5:22 pm
    Shelly in Switzerland
    Participant

      I am on cycle 13 of the Roche b-raf trial, receiving the b-raf drug.  I have been responding the whole time.  Recently I have been experiencing a sense of instability in my left leg as well as poor balance because of it.  When walk my left foot slaps down and I have been tripping often as if I am not picking up my feet enough.  My last scans still showed "response" to the b-raf inhibitor. 

      I am on cycle 13 of the Roche b-raf trial, receiving the b-raf drug.  I have been responding the whole time.  Recently I have been experiencing a sense of instability in my left leg as well as poor balance because of it.  When walk my left foot slaps down and I have been tripping often as if I am not picking up my feet enough.  My last scans still showed "response" to the b-raf inhibitor. 

      Another side effect that has been bothering me is my arms, hands, and shoulders falling asleep when in any position that I try to sleep. the olnly way I can sleep is with sleeping aides.   My range of motion has been reduced drastically for someone who used to work-out a lot. s

      Has anyone experienced similar side effects? 

      Has anyone been on the "responding" list for b-raf and still developed brain mets?  My doctor seems to feel this is very unlikely but willing to do a brain MRI if I want one.

      Thank you for your help.

      Shelly in Switzerland, stage IV

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    • Replies
        • February 22, 2011 at 5:54 pm
        jim Breitfeller
        Participant

          Shelly, This was left mo my Facebook account.

          Jim Breitfeller Bob, If it is the PLX4032 trial by itself, there are indication that the melanoma cancer over time finds another path to take and the Patient relapses anywhere from 3 to 12 months.

          The better BRAF trial is the GSK with MEK inhibitor.

           

          Brian F commented on your status.
          Brian wrote: "Yes it does. My wife had clear brain scans for over a year, and after 4 months on the PLX4032 trial she silently got diffuse disease in her brain and she passed away shortly after. I wonder if the drug had something to do with it since at least our doctor said he never say a brain scan like hers, and this is a trial after all. Best of luck to everyone. I firmly believe in combinations not the drug on its own."
           
          I hope this helps
          Jimmy B
           
          • February 22, 2011 at 5:54 pm
          jim Breitfeller
          Participant

            Shelly, This was left mo my Facebook account.

            Jim Breitfeller Bob, If it is the PLX4032 trial by itself, there are indication that the melanoma cancer over time finds another path to take and the Patient relapses anywhere from 3 to 12 months.

            The better BRAF trial is the GSK with MEK inhibitor.

             

            Brian F commented on your status.
            Brian wrote: "Yes it does. My wife had clear brain scans for over a year, and after 4 months on the PLX4032 trial she silently got diffuse disease in her brain and she passed away shortly after. I wonder if the drug had something to do with it since at least our doctor said he never say a brain scan like hers, and this is a trial after all. Best of luck to everyone. I firmly believe in combinations not the drug on its own."
             
            I hope this helps
            Jimmy B
             
            • February 22, 2011 at 8:39 pm
            MichaelFL
            Participant

              Hi Shelly,

              It is my understanding that PLX4032 does not cross the BBB (blood brain barrier), and that is why those that had them were excluded from trials. You may wish to discuss this with your doctor along with getting that MRI just to be on the safe side.

              Best wishes,

              Michael

              • February 22, 2011 at 8:39 pm
              MichaelFL
              Participant

                Hi Shelly,

                It is my understanding that PLX4032 does not cross the BBB (blood brain barrier), and that is why those that had them were excluded from trials. You may wish to discuss this with your doctor along with getting that MRI just to be on the safe side.

                Best wishes,

                Michael

                • February 23, 2011 at 1:53 am
                jag
                Participant

                  Shelly, I hope that the symptoms you are experiencing are side effects of the BRAF inhibitor, I would definitely get an MRI though.  Amy Busby is one of the people we know responded well to the BRAF inhibitors who developed Brain metastases while on a BRAF inhibitor, but was otherwise clear on scans.

                   https://www.melanoma.org/community/profiles/amy-busby

                  • February 23, 2011 at 1:53 am
                  jag
                  Participant

                    Shelly, I hope that the symptoms you are experiencing are side effects of the BRAF inhibitor, I would definitely get an MRI though.  Amy Busby is one of the people we know responded well to the BRAF inhibitors who developed Brain metastases while on a BRAF inhibitor, but was otherwise clear on scans.

                     https://www.melanoma.org/community/profiles/amy-busby

                    • March 1, 2011 at 2:31 pm
                    Shelly in Switzerland
                    Participant

                      I have an MRI scheduled now for the 3rd of March with a meeting on the 8th.  My symptoms do not seem to be resolving themselves.  In fact my balance is more off and I can't navigate my left foot into my shoes without my hands to help me.  Slower to react while driving.

                      I am frustrated with trying to figure this whole thing of being a part of a clinical trial.  Are the doctors from the trial 'my' doctors or when things go south do I seek other doctors?  After reading about symptoms of brain/spinal metasteses I am pretty sure this is what is going on.

                      On a positive note, the neuropathy in my arms is not as bad after having a wonderful massage.  She really worked on some knots in my neck.  (Arms still hurt as usual side effect of PLX 4032.) 

                      How do I navigate this whole next part with me in Switzerland and all of my family being in Seattle and Vermont? (Could I be any more spread out in the world?) 

                      Scared but relying on God to get me through!   

                      Peace and light,

                      Shelly

                        • March 1, 2011 at 6:20 pm
                        lhaley
                        Participant

                          Shelly,

                          I do hope that this is being caused by the drugs.  Who was the Doctor you were going to before the trial?  If they are different than you might want to contact both of them. 

                          Prayers are with you,

                          linda

                          • March 1, 2011 at 6:20 pm
                          lhaley
                          Participant

                            Shelly,

                            I do hope that this is being caused by the drugs.  Who was the Doctor you were going to before the trial?  If they are different than you might want to contact both of them. 

                            Prayers are with you,

                            linda

                          • March 1, 2011 at 2:31 pm
                          Shelly in Switzerland
                          Participant

                            I have an MRI scheduled now for the 3rd of March with a meeting on the 8th.  My symptoms do not seem to be resolving themselves.  In fact my balance is more off and I can't navigate my left foot into my shoes without my hands to help me.  Slower to react while driving.

                            I am frustrated with trying to figure this whole thing of being a part of a clinical trial.  Are the doctors from the trial 'my' doctors or when things go south do I seek other doctors?  After reading about symptoms of brain/spinal metasteses I am pretty sure this is what is going on.

                            On a positive note, the neuropathy in my arms is not as bad after having a wonderful massage.  She really worked on some knots in my neck.  (Arms still hurt as usual side effect of PLX 4032.) 

                            How do I navigate this whole next part with me in Switzerland and all of my family being in Seattle and Vermont? (Could I be any more spread out in the world?) 

                            Scared but relying on God to get me through!   

                            Peace and light,

                            Shelly

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