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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 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 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 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.

                                      • 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.

                                        Viewing 5 reply threads
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