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Anyone with Brain mets taking Zelboraf?
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Anyone with Brain mets taking Zelboraf?

› Forums › General Melanoma Community › Anyone with Brain mets taking Zelboraf?

  • Post
    • September 16, 2011 at 5:08 pm
    dearfoam
    Participant

      Hi,

      Hi,

      I haven't posted here before, but have lurked a little while. I am taking care of dad who has stage 4 Melanoma (dx April 2011), with mets to brain and lungs among others. At least 20 tumors. We have had some slowed growth since after his whole brain radiation in late spring and 4 courses of 21 days on/ 7 days off Temodar (started 5th course this week). We see his two Oncologisits (Melanoma Dr and the Radio Onc) next week. Should find out if he has the mutation that goes with Zelboraf and wether or not Radio Onc thinks we should do more radiation, or if the others have shrunk enough to be removed with gamma knife, and if that is even a good idea.

      Out of about 6 brain mets, two showed shrinkage (1/3 and 1/2) on the last MRI in early Sept compared to June. Two abdominal tumors (spleen and colon) had also grown according to same week's CT scan, but just by a few mm.

      So we don't have the results in and don't knwo if Zelboraf will be an option, but I am wondering if anyone has had brain mets affected by Zelboraf?

      For some background:

      It's been a rough year having to retire a workaholic dad. We had some hard times where it looked like he was about to go any day. He'd had a lung collapse after getting the biopsy in April, then a bout with blood clots in both lungs in late May. He feels a lot better but has basically been on steroids since April. Trying to wean him off = bad news. He is also taking antidepressants, ritalin, blood pressure med, etc to help counter the Temodar/ deal with other problems and help him feel with it, motivate to read and talk, eat, etc. He is really lucky and not had much pain to speak of, just headaches earlier on before treatment was started in earnest.

      I'm pretty concerned about everyhting, duh. Poor dad has no concept of what is really going on (major denial). Like, he listens and stuff, but only selectively repeats (and exaggerates) what works for him, which I appreciate and get on one level, but not so much where he is denying himself things. I appreciate his stubborness to give into cancer, but am kinda mad that he won't take advantage of the time "extended" to his life already. (It's better than it was since he has been on Zoloft and more of the dechadron.) He doesn't understand what treatments do and don't do, and that he will be on them indefinitely. It is really frustrating for us when he wants to move out of our house yet can't drive or think straight. Doesn't want to tell anayone things he'd like to do, because he is about to get all better "in a month or two" and go back to work, and not need to worry about his wishes…

      I guess I am not alone in all this, but it sure isn't fun being the one in touch with reality!

    Viewing 7 reply threads
    • Replies
        • September 17, 2011 at 1:40 am
        deardad
        Participant

          Hi sorry to hear you are going through this and I can relate being the daughter of a patient who too had no concept of what was really going on. My dad started stage 3 and this quickly moved to a single brain met 6 months later, and now liver and spleen (who knows where else now we get results Monday). My dad is starting BRAF (venurefinib) next week and his oncologist who works in research (I am from Melbourne Australia) said something about it having some success with brain mets. He even mentioned that they are rethinking whether there is a blood brain barrier? My dad also selectively listens to what he wants to hear. I really think that's how they cope. It must be very frightening facing an end of life issue. My mum isn't coping and I am the only pro-active one in the familiar. Denial although frustrating gives everyone some respite until they really do get sick! My dad is making the most of family time, grand kids.  It's all just so sad and stressful, you are not alone in this, I really feel for you. 

          Take care and I'm sure some regulars here will provide some good info on Zelboraf for you. Take care.

            • September 17, 2011 at 1:42 am
            deardad
            Participant

              I meant family!!

              • September 17, 2011 at 1:42 am
              deardad
              Participant

                I meant family!!

              • September 17, 2011 at 1:40 am
              deardad
              Participant

                Hi sorry to hear you are going through this and I can relate being the daughter of a patient who too had no concept of what was really going on. My dad started stage 3 and this quickly moved to a single brain met 6 months later, and now liver and spleen (who knows where else now we get results Monday). My dad is starting BRAF (venurefinib) next week and his oncologist who works in research (I am from Melbourne Australia) said something about it having some success with brain mets. He even mentioned that they are rethinking whether there is a blood brain barrier? My dad also selectively listens to what he wants to hear. I really think that's how they cope. It must be very frightening facing an end of life issue. My mum isn't coping and I am the only pro-active one in the familiar. Denial although frustrating gives everyone some respite until they really do get sick! My dad is making the most of family time, grand kids.  It's all just so sad and stressful, you are not alone in this, I really feel for you. 

                Take care and I'm sure some regulars here will provide some good info on Zelboraf for you. Take care.

                • September 17, 2011 at 7:39 pm
                mombase
                Participant

                  I will find out Monday whether I will starting on Zelboraf or Yervoy on Monday based on my PET scan results from a few days ago.  If new brain mets and increased size/number of lung mets, maybe "Z" for the lungs and SRS on the brain? If stable results, maybe "Y" first? I can't wait until Monday to find out since it will be my first treatment.

                  It must be so hard taking care of a parent who is dealing with this dreadful disease. I have a 17-year-old daughter and I know this has been hard on her, and I am not in denial. I would just say to love him to pieces no matter what stage of acceptance he is in – I knw, easier said than done!!  crying

                  Cristy, Stage IV

                  • September 17, 2011 at 7:39 pm
                  mombase
                  Participant

                    I will find out Monday whether I will starting on Zelboraf or Yervoy on Monday based on my PET scan results from a few days ago.  If new brain mets and increased size/number of lung mets, maybe "Z" for the lungs and SRS on the brain? If stable results, maybe "Y" first? I can't wait until Monday to find out since it will be my first treatment.

                    It must be so hard taking care of a parent who is dealing with this dreadful disease. I have a 17-year-old daughter and I know this has been hard on her, and I am not in denial. I would just say to love him to pieces no matter what stage of acceptance he is in – I knw, easier said than done!!  crying

                    Cristy, Stage IV

                    • September 18, 2011 at 3:16 am
                    glewis923
                    Participant

                      Yes, i have multiple brain tumors 10 to 15?  Ive had SRS and WBR back in Feb./March.  then had Yervoy.  Now i've been on Zelboraf for 3 weeks.  will be scanned next Thurs. and will try to let you know if brain tumors (or what's left) have shrunk/grow/etc.

                       

                      Take Care- Grady.

                        • September 26, 2011 at 3:31 am
                        dearfoam
                        Participant

                          Grady,

                          Have you had any news? Hop ethe Zelboraf is helping!

                          Take care,

                          DF

                          • September 26, 2011 at 3:31 am
                          dearfoam
                          Participant

                            Grady,

                            Have you had any news? Hop ethe Zelboraf is helping!

                            Take care,

                            DF

                          • September 18, 2011 at 3:16 am
                          glewis923
                          Participant

                            Yes, i have multiple brain tumors 10 to 15?  Ive had SRS and WBR back in Feb./March.  then had Yervoy.  Now i've been on Zelboraf for 3 weeks.  will be scanned next Thurs. and will try to let you know if brain tumors (or what's left) have shrunk/grow/etc.

                             

                            Take Care- Grady.

                            • September 18, 2011 at 6:09 am
                            dearfoam
                            Participant
                              Thanks for all your replies! I look forward to hearing more of your experiences!
                                • September 21, 2011 at 7:41 pm
                                dearfoam
                                Participant

                                  Dad's tissue sample was insufficient, so we still do not know if he is BRAF + to go on Zelboraf. Hmmpf!

                                  • September 21, 2011 at 7:41 pm
                                  dearfoam
                                  Participant

                                    Dad's tissue sample was insufficient, so we still do not know if he is BRAF + to go on Zelboraf. Hmmpf!

                                  • September 18, 2011 at 6:09 am
                                  dearfoam
                                  Participant
                                    Thanks for all your replies! I look forward to hearing more of your experiences!
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