Re: Zelboraf and cognitive impairment
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Re: Zelboraf and cognitive impairment

› Forums › General Melanoma Community › Re: Zelboraf and cognitive impairment

  • Post
    • August 26, 2012 at 6:37 pm
    Mickey n Jo
    Participant

      Hi, my name is Jo and I am writing on behalf of my husband, Mickey. He was diagnosed as stage 4 melanoma in May 2012

      and was put on Zelboraf within a week.  He's had all the usual side effects, nausea, hair loss, joint pain etc., but now

      he is experiencing memory problems. He can't remember certain names or words and it's scary for him which creates

      anxiety ( which he suffered from already). He had a brain MRI which came back OK, no mets. He also had a spinal

      Hi, my name is Jo and I am writing on behalf of my husband, Mickey. He was diagnosed as stage 4 melanoma in May 2012

      and was put on Zelboraf within a week.  He's had all the usual side effects, nausea, hair loss, joint pain etc., but now

      he is experiencing memory problems. He can't remember certain names or words and it's scary for him which creates

      anxiety ( which he suffered from already). He had a brain MRI which came back OK, no mets. He also had a spinal

      tap a week ago to rule out infection, but haven't gotten results yet. We were wondering if anyone else has had this

      problem while on Zel.

    Viewing 5 reply threads
    • Replies
        • August 27, 2012 at 3:52 pm
        WayneG
        Participant

          Been on Zel since 4/23, stage IV melanoma and except for a couple of days, full dosage.  Side effects have been tolerable and did get better around the end of month 3.  I'm also about the same age as your husband (62 about to be 63) and still work.  Have what I think are normal, age related memory issues, don't think Zel has made it worse.

          That said, this drug does affect people differently and I wouldn't rule it out yet.  Zelboraf has a nurse hotline that you can call and they "should" tell you if others have reported similar reactions.

          In my opinion too, just having melanoma especially stage IV, makes you anxious and then everything that happens is automatically thought to be related.  But we know we can have other stuff totally separate.

          Be vigilent..

          Wayne

          • August 27, 2012 at 3:52 pm
          WayneG
          Participant

            Been on Zel since 4/23, stage IV melanoma and except for a couple of days, full dosage.  Side effects have been tolerable and did get better around the end of month 3.  I'm also about the same age as your husband (62 about to be 63) and still work.  Have what I think are normal, age related memory issues, don't think Zel has made it worse.

            That said, this drug does affect people differently and I wouldn't rule it out yet.  Zelboraf has a nurse hotline that you can call and they "should" tell you if others have reported similar reactions.

            In my opinion too, just having melanoma especially stage IV, makes you anxious and then everything that happens is automatically thought to be related.  But we know we can have other stuff totally separate.

            Be vigilent..

            Wayne

            • August 27, 2012 at 3:52 pm
            WayneG
            Participant

              Been on Zel since 4/23, stage IV melanoma and except for a couple of days, full dosage.  Side effects have been tolerable and did get better around the end of month 3.  I'm also about the same age as your husband (62 about to be 63) and still work.  Have what I think are normal, age related memory issues, don't think Zel has made it worse.

              That said, this drug does affect people differently and I wouldn't rule it out yet.  Zelboraf has a nurse hotline that you can call and they "should" tell you if others have reported similar reactions.

              In my opinion too, just having melanoma especially stage IV, makes you anxious and then everything that happens is automatically thought to be related.  But we know we can have other stuff totally separate.

              Be vigilent..

              Wayne

                • August 27, 2012 at 7:48 pm
                Mickey n Jo
                Participant

                  Wayne, thank you for your kind and informative reply.  I am definitely going to call the

                  hotline and see what info they can give us. We will post what they have to say.

                  We are new to posting in this forum, but you all have been a source of valuable

                  information for some time.  This disease is such a roller coaster ride, it really helps

                  to have people who truly understand what it's like. 

                  • August 27, 2012 at 9:44 pm
                  Mickey n Jo
                  Participant

                    Called the hotline and they said they had no reports of any kind of memory problems

                    associated with Zel, but said it wasn't totally out of the question.  We just have to

                    wait and see what shows on the spinal tap, if anything, otherwise it could just

                    be related to anxiety, since when you're extremely anxious you can become

                    forgetful.

                    • August 27, 2012 at 9:57 pm
                    WayneG
                    Participant

                      Glad you called them and thanks for posting!

                       

                      Wayne

                      • August 27, 2012 at 9:57 pm
                      WayneG
                      Participant

                        Glad you called them and thanks for posting!

                         

                        Wayne

                        • August 27, 2012 at 9:57 pm
                        WayneG
                        Participant

                          Glad you called them and thanks for posting!

                           

                          Wayne

                          • August 27, 2012 at 9:44 pm
                          Mickey n Jo
                          Participant

                            Called the hotline and they said they had no reports of any kind of memory problems

                            associated with Zel, but said it wasn't totally out of the question.  We just have to

                            wait and see what shows on the spinal tap, if anything, otherwise it could just

                            be related to anxiety, since when you're extremely anxious you can become

                            forgetful.

                            • August 27, 2012 at 9:44 pm
                            Mickey n Jo
                            Participant

                              Called the hotline and they said they had no reports of any kind of memory problems

                              associated with Zel, but said it wasn't totally out of the question.  We just have to

                              wait and see what shows on the spinal tap, if anything, otherwise it could just

                              be related to anxiety, since when you're extremely anxious you can become

                              forgetful.

                              • August 27, 2012 at 7:48 pm
                              Mickey n Jo
                              Participant

                                Wayne, thank you for your kind and informative reply.  I am definitely going to call the

                                hotline and see what info they can give us. We will post what they have to say.

                                We are new to posting in this forum, but you all have been a source of valuable

                                information for some time.  This disease is such a roller coaster ride, it really helps

                                to have people who truly understand what it's like. 

                                • August 27, 2012 at 7:48 pm
                                Mickey n Jo
                                Participant

                                  Wayne, thank you for your kind and informative reply.  I am definitely going to call the

                                  hotline and see what info they can give us. We will post what they have to say.

                                  We are new to posting in this forum, but you all have been a source of valuable

                                  information for some time.  This disease is such a roller coaster ride, it really helps

                                  to have people who truly understand what it's like. 

                                • August 28, 2012 at 12:25 am
                                awillett1991
                                Participant
                                  I had an episode in June where I think you could say I was basically overdosing on Zel. Sort of like the flu plus a major depression, liver levels were all up, sweating all the time, and I know I was not thinking clearly..

                                  I would definitely not count out Zel as the cause for this since we know it goes into the brain. I was off for a few days, then reduced to half dose for a week, then back to 3 pills twice a day. I just cannot handle a higher dose. Nor can I seem to stay on it without needing a 2 or 3 day break every few weeks. What dose is he on? Maybe reducing would help. This is very common.

                                    • August 28, 2012 at 6:01 pm
                                    Mickey n Jo
                                    Participant

                                      Started in May at full dose, but in July had to go off for a few days due to severe

                                      nausea and joint pain, after that went back on 3 pills 2x a day, but even that

                                      seems to be too much. Have to see what Dr suggests.

                                      • August 28, 2012 at 6:01 pm
                                      Mickey n Jo
                                      Participant

                                        Started in May at full dose, but in July had to go off for a few days due to severe

                                        nausea and joint pain, after that went back on 3 pills 2x a day, but even that

                                        seems to be too much. Have to see what Dr suggests.

                                        • August 28, 2012 at 6:01 pm
                                        Mickey n Jo
                                        Participant

                                          Started in May at full dose, but in July had to go off for a few days due to severe

                                          nausea and joint pain, after that went back on 3 pills 2x a day, but even that

                                          seems to be too much. Have to see what Dr suggests.

                                        • August 28, 2012 at 12:25 am
                                        awillett1991
                                        Participant
                                          I had an episode in June where I think you could say I was basically overdosing on Zel. Sort of like the flu plus a major depression, liver levels were all up, sweating all the time, and I know I was not thinking clearly..

                                          I would definitely not count out Zel as the cause for this since we know it goes into the brain. I was off for a few days, then reduced to half dose for a week, then back to 3 pills twice a day. I just cannot handle a higher dose. Nor can I seem to stay on it without needing a 2 or 3 day break every few weeks. What dose is he on? Maybe reducing would help. This is very common.

                                          • August 28, 2012 at 12:25 am
                                          awillett1991
                                          Participant
                                            I had an episode in June where I think you could say I was basically overdosing on Zel. Sort of like the flu plus a major depression, liver levels were all up, sweating all the time, and I know I was not thinking clearly..

                                            I would definitely not count out Zel as the cause for this since we know it goes into the brain. I was off for a few days, then reduced to half dose for a week, then back to 3 pills twice a day. I just cannot handle a higher dose. Nor can I seem to stay on it without needing a 2 or 3 day break every few weeks. What dose is he on? Maybe reducing would help. This is very common.

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