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Side effects with Zelboraf
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Side effects with Zelboraf

› Forums › General Melanoma Community › Side effects with Zelboraf

  • Post
    • July 11, 2013 at 7:49 am
    Linda56
    Participant

      Hello,

      I am new on this forum.  I'm taking Zelboraf now for about 11 months.

      I would like to know if anyone has the following side effects with Zelboraf (this started about three months ago – my last scan was NED)

      – extreme cold feeling with goose bumps (even when the weather is warm) 

      – followed by heavy sweating within a few seconds

      This happens about twenty times a day and also during the night which causes me a lot of sleepless nights.

      Greetings

      Linda

      Hello,

      I am new on this forum.  I'm taking Zelboraf now for about 11 months.

      I would like to know if anyone has the following side effects with Zelboraf (this started about three months ago – my last scan was NED)

      – extreme cold feeling with goose bumps (even when the weather is warm) 

      – followed by heavy sweating within a few seconds

      This happens about twenty times a day and also during the night which causes me a lot of sleepless nights.

      Greetings

      Linda

    Viewing 16 reply threads
    • Replies
        • July 11, 2013 at 8:12 am
        Owl
        Participant

          Dear Linda,

          happy to hear that Z is working so well for you. My husband is on Z for 7 months and more or less NED. He has got the normal side effects like sun sensivity, hair loss, very dry skin and rashes, joint pain…I have never heard of cold feeling or sweating as you are describing though it might be related to blood pressure issues. My husband was told to have a ECG done on a regular basis. Have you checked this with your docs?

          All the best, Jenny

          • July 11, 2013 at 8:12 am
          Owl
          Participant

            Dear Linda,

            happy to hear that Z is working so well for you. My husband is on Z for 7 months and more or less NED. He has got the normal side effects like sun sensivity, hair loss, very dry skin and rashes, joint pain…I have never heard of cold feeling or sweating as you are describing though it might be related to blood pressure issues. My husband was told to have a ECG done on a regular basis. Have you checked this with your docs?

            All the best, Jenny

            • July 11, 2013 at 8:12 am
            Owl
            Participant

              Dear Linda,

              happy to hear that Z is working so well for you. My husband is on Z for 7 months and more or less NED. He has got the normal side effects like sun sensivity, hair loss, very dry skin and rashes, joint pain…I have never heard of cold feeling or sweating as you are describing though it might be related to blood pressure issues. My husband was told to have a ECG done on a regular basis. Have you checked this with your docs?

              All the best, Jenny

              • July 11, 2013 at 12:32 pm
              Linda56
              Participant

                Hello Jenny,

                Thank you for your reply.  I also have the same side effects that your husband has.  My hair is now growing again but very curly and there's not much that I can do about this.  My doctor told me that the sweating is probably related to menopausal effects (I'm 56, so it might be possible), but since I have also the cold feeling, I thought that it might have something to do with Z.  I will perhaps ask my doctor to do a ECG as you are suggesting, it's not a bad idea.

                Kind regards Linda

                • July 11, 2013 at 1:23 pm
                Richard_K
                Participant
                  Linda, I can’t help with your specific side effect question but I would like to add to the ECG comment. One of the most serious side effects is QT prolongation; serious enough to have to stop taking Zelboraf. I’m still in the phase II clinical trial and I get three ECGs every six weeks. Probably overkill, but part of the trial protocol. Wishing you continued good luck on Zelboraf and help with your body temperature issues.
                  • July 11, 2013 at 1:23 pm
                  Richard_K
                  Participant
                    Linda, I can’t help with your specific side effect question but I would like to add to the ECG comment. One of the most serious side effects is QT prolongation; serious enough to have to stop taking Zelboraf. I’m still in the phase II clinical trial and I get three ECGs every six weeks. Probably overkill, but part of the trial protocol. Wishing you continued good luck on Zelboraf and help with your body temperature issues.
                    • July 11, 2013 at 1:23 pm
                    Richard_K
                    Participant
                      Linda, I can’t help with your specific side effect question but I would like to add to the ECG comment. One of the most serious side effects is QT prolongation; serious enough to have to stop taking Zelboraf. I’m still in the phase II clinical trial and I get three ECGs every six weeks. Probably overkill, but part of the trial protocol. Wishing you continued good luck on Zelboraf and help with your body temperature issues.
                      • July 11, 2013 at 3:46 pm
                      POW
                      Participant

                        Linda-

                        I agree with Dick. Zelboraf can cause heart damage which can lead to a heart attack and even death. When my brother was taking Z his doctor absolutely insisted that he have an EKG at least once a month (all were normal). I don't know what is causing your symptoms; it could be due to many things. But one thing that can cause the symptoms you are describing would be heart palpitations. Please get yourself checked out immediately.

                        • July 11, 2013 at 6:30 pm
                        Tim–MRF
                        Guest

                          I have not heard of that side effect, but it is possible.  You may want to call the patient support line that Genentech, the maker of Zelboraf, hosts.  It is staffed by oncology nurses and they will have worked with every side effect of the drug.

                          That number is (855) 935-2672.

                          Tim–MRF

                          • July 11, 2013 at 6:30 pm
                          Tim–MRF
                          Guest

                            I have not heard of that side effect, but it is possible.  You may want to call the patient support line that Genentech, the maker of Zelboraf, hosts.  It is staffed by oncology nurses and they will have worked with every side effect of the drug.

                            That number is (855) 935-2672.

                            Tim–MRF

                            • July 11, 2013 at 6:30 pm
                            Tim–MRF
                            Guest

                              I have not heard of that side effect, but it is possible.  You may want to call the patient support line that Genentech, the maker of Zelboraf, hosts.  It is staffed by oncology nurses and they will have worked with every side effect of the drug.

                              That number is (855) 935-2672.

                              Tim–MRF

                              • July 11, 2013 at 7:44 pm
                              awillett1991
                              Participant
                                Linda,,

                                I had loads of side effects, including chills and sweating, you can check my profile. I had to go off a few days, then on half dose a week, then back to my 3 pills twice a day. I got to the point I couldn’t stay on it full time.

                                Amy

                                • July 11, 2013 at 7:44 pm
                                awillett1991
                                Participant
                                  Linda,,

                                  I had loads of side effects, including chills and sweating, you can check my profile. I had to go off a few days, then on half dose a week, then back to my 3 pills twice a day. I got to the point I couldn’t stay on it full time.

                                  Amy

                                  • July 11, 2013 at 7:44 pm
                                  awillett1991
                                  Participant
                                    Linda,,

                                    I had loads of side effects, including chills and sweating, you can check my profile. I had to go off a few days, then on half dose a week, then back to my 3 pills twice a day. I got to the point I couldn’t stay on it full time.

                                    Amy

                                    • July 11, 2013 at 8:12 pm
                                    Linda56
                                    Participant

                                      Hello Dick,

                                      I never had an ECG since I started with Zelboraf.  I have a pet-scan next Monday and  I will raise the question of the ECG with my oncologist next time. I' m in phase IV trial.

                                      Thank you for your tip & best wishes.

                                      Linda

                                      • July 11, 2013 at 8:17 pm
                                      Linda56
                                      Participant

                                        Amy,

                                        I had a look at your profile and I'm somewhat happy that someone recognizes my symptoms.  I will surely talk about this at my next visit with my oncologist.  Will keep you posted.

                                        Thank you for your help.

                                        Linda

                                          • October 23, 2013 at 6:18 pm
                                          Linda56
                                          Participant

                                            Just an update on the above.  The side effects that I thought were coming from Zelboraf are solely due to menopausal symptons.  With the correct hormonal medication, these side effects have completely disappeared now.  My last scan showed a small lesion on my back, but after closer examination and excision it revealed to be a harmless sebasteous cyst.  This means that I'm still NED for almost six months, which is very good news. 
                                            Kindest regards.

                                            • October 23, 2013 at 6:18 pm
                                            Linda56
                                            Participant

                                              Just an update on the above.  The side effects that I thought were coming from Zelboraf are solely due to menopausal symptons.  With the correct hormonal medication, these side effects have completely disappeared now.  My last scan showed a small lesion on my back, but after closer examination and excision it revealed to be a harmless sebasteous cyst.  This means that I'm still NED for almost six months, which is very good news. 
                                              Kindest regards.

                                              • October 23, 2013 at 6:18 pm
                                              Linda56
                                              Participant

                                                Just an update on the above.  The side effects that I thought were coming from Zelboraf are solely due to menopausal symptons.  With the correct hormonal medication, these side effects have completely disappeared now.  My last scan showed a small lesion on my back, but after closer examination and excision it revealed to be a harmless sebasteous cyst.  This means that I'm still NED for almost six months, which is very good news. 
                                                Kindest regards.

                                              • July 11, 2013 at 8:23 pm
                                              Linda56
                                              Participant

                                                I must say that I'm a little anxious now when reading about the QT prolongation and the possible heart damage.  I will surely raise the question at my next visit with my oncologist.  Next Monday, there is a pet-scan scheduled.  Thank you for your advice.  Will keep you posted.  Kind regards.  Linda

                                                  • July 11, 2013 at 12:32 pm
                                                  Linda56
                                                  Participant

                                                    Hello Jenny,

                                                    Thank you for your reply.  I also have the same side effects that your husband has.  My hair is now growing again but very curly and there's not much that I can do about this.  My doctor told me that the sweating is probably related to menopausal effects (I'm 56, so it might be possible), but since I have also the cold feeling, I thought that it might have something to do with Z.  I will perhaps ask my doctor to do a ECG as you are suggesting, it's not a bad idea.

                                                    Kind regards Linda

                                                    • July 11, 2013 at 12:32 pm
                                                    Linda56
                                                    Participant

                                                      Hello Jenny,

                                                      Thank you for your reply.  I also have the same side effects that your husband has.  My hair is now growing again but very curly and there's not much that I can do about this.  My doctor told me that the sweating is probably related to menopausal effects (I'm 56, so it might be possible), but since I have also the cold feeling, I thought that it might have something to do with Z.  I will perhaps ask my doctor to do a ECG as you are suggesting, it's not a bad idea.

                                                      Kind regards Linda

                                                    • July 11, 2013 at 3:46 pm
                                                    POW
                                                    Participant

                                                      Linda-

                                                      I agree with Dick. Zelboraf can cause heart damage which can lead to a heart attack and even death. When my brother was taking Z his doctor absolutely insisted that he have an EKG at least once a month (all were normal). I don't know what is causing your symptoms; it could be due to many things. But one thing that can cause the symptoms you are describing would be heart palpitations. Please get yourself checked out immediately.

                                                      • July 11, 2013 at 3:46 pm
                                                      POW
                                                      Participant

                                                        Linda-

                                                        I agree with Dick. Zelboraf can cause heart damage which can lead to a heart attack and even death. When my brother was taking Z his doctor absolutely insisted that he have an EKG at least once a month (all were normal). I don't know what is causing your symptoms; it could be due to many things. But one thing that can cause the symptoms you are describing would be heart palpitations. Please get yourself checked out immediately.

                                                        • July 11, 2013 at 8:12 pm
                                                        Linda56
                                                        Participant

                                                          Hello Dick,

                                                          I never had an ECG since I started with Zelboraf.  I have a pet-scan next Monday and  I will raise the question of the ECG with my oncologist next time. I' m in phase IV trial.

                                                          Thank you for your tip & best wishes.

                                                          Linda

                                                          • July 11, 2013 at 8:12 pm
                                                          Linda56
                                                          Participant

                                                            Hello Dick,

                                                            I never had an ECG since I started with Zelboraf.  I have a pet-scan next Monday and  I will raise the question of the ECG with my oncologist next time. I' m in phase IV trial.

                                                            Thank you for your tip & best wishes.

                                                            Linda

                                                            • July 11, 2013 at 8:17 pm
                                                            Linda56
                                                            Participant

                                                              Amy,

                                                              I had a look at your profile and I'm somewhat happy that someone recognizes my symptoms.  I will surely talk about this at my next visit with my oncologist.  Will keep you posted.

                                                              Thank you for your help.

                                                              Linda

                                                              • July 11, 2013 at 8:17 pm
                                                              Linda56
                                                              Participant

                                                                Amy,

                                                                I had a look at your profile and I'm somewhat happy that someone recognizes my symptoms.  I will surely talk about this at my next visit with my oncologist.  Will keep you posted.

                                                                Thank you for your help.

                                                                Linda

                                                                • July 11, 2013 at 8:23 pm
                                                                Linda56
                                                                Participant

                                                                  I must say that I'm a little anxious now when reading about the QT prolongation and the possible heart damage.  I will surely raise the question at my next visit with my oncologist.  Next Monday, there is a pet-scan scheduled.  Thank you for your advice.  Will keep you posted.  Kind regards.  Linda

                                                                  • July 11, 2013 at 8:23 pm
                                                                  Linda56
                                                                  Participant

                                                                    I must say that I'm a little anxious now when reading about the QT prolongation and the possible heart damage.  I will surely raise the question at my next visit with my oncologist.  Next Monday, there is a pet-scan scheduled.  Thank you for your advice.  Will keep you posted.  Kind regards.  Linda

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