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Numerous side effects of Zelboraf..has anyone else experienced these? If so what works for you for relief?

Forums General Melanoma Community Numerous side effects of Zelboraf..has anyone else experienced these? If so what works for you for relief?

  • Post
    out4air
    Participant
      My husband is Stage IIIb Metastatic (several unresectable melanomas on head) and has been taking Zelboraf 6 per day along with 10 mg of Prednisone for 25 days and has all the below symptoms:

      All symptoms:
      Excessive Sinus drainage and very watery eyes
      Tongue and inside of mouth is coated white
      Water and liquids taste terrible – very bad taste in mouth
      Blurry vision, hard to focus more so when reading things close up
      Redness in face and feeling of Tightness of face -just noticed skin was slightly flaking
      Rash everywhere (shoulders to ankles) – doesn’t hurt but if chilled it is a very weird feeling. The two spots on outside of calves do hurt but are red and you feel a lump
      No stamina – tired frequently
      Not sleeping well
      Flat like warts on head and side of shoulder – Dr. removed them on Friday 6/14
      Headaches
      Everyday seem to feel worse

      Also from From 3/26 modified neck dissection his neck muscle is still quite painful and very tight even after two months of physical therapy – would muscle relaxer help? Or has anyone tried acupuncture therapy for pain relief in neck muscle after this surgery?

      Some studies have shown that combining a BRAF inhibitor like Zelboraf with a MEK inhibitor reduces a number of side effects, including rash. A MEK inhibitor was approved by the FDA a few days ago, under the trade name Mekinist. Has anyone tried the combination of these drugs?

    Viewing 11 reply threads
    • Replies
        awillett1991
        Participant
          First let me say I’m so sorry your hubby is suffering so much. I’ve had alot of these symptoms and they do get better but it takes time. I was taking Pred and also 2 Aleve every 12 hours to deal with the pain and inflammation. Also had to have something to help me sleep because of the prednisone. Had to go back to wearing glasses, many trips to the eye dr, eye creams, drops, etc but my eyes weren’t watery but excessively dry.

          I found exercise was best for the fatigue. I know it’s hard to get yourself up when you’re not well, but it really did help.

          Here is a list I compiled, maybe it will help.

          http://zelsideeffects.wordpress.com/

          awillett1991
          Participant
            First let me say I’m so sorry your hubby is suffering so much. I’ve had alot of these symptoms and they do get better but it takes time. I was taking Pred and also 2 Aleve every 12 hours to deal with the pain and inflammation. Also had to have something to help me sleep because of the prednisone. Had to go back to wearing glasses, many trips to the eye dr, eye creams, drops, etc but my eyes weren’t watery but excessively dry.

            I found exercise was best for the fatigue. I know it’s hard to get yourself up when you’re not well, but it really did help.

            Here is a list I compiled, maybe it will help.

            http://zelsideeffects.wordpress.com/

            awillett1991
            Participant
              First let me say I’m so sorry your hubby is suffering so much. I’ve had alot of these symptoms and they do get better but it takes time. I was taking Pred and also 2 Aleve every 12 hours to deal with the pain and inflammation. Also had to have something to help me sleep because of the prednisone. Had to go back to wearing glasses, many trips to the eye dr, eye creams, drops, etc but my eyes weren’t watery but excessively dry.

              I found exercise was best for the fatigue. I know it’s hard to get yourself up when you’re not well, but it really did help.

              Here is a list I compiled, maybe it will help.

              http://zelsideeffects.wordpress.com/

              joy_
              Participant

                Sorry to hear your husband is so miserable.  My husband had a lot of these side effects with Zelboraf too.  In his case, the side effects did start to improve on about the 5th week.  He was at the full dosage the entire time too and started to feel better only to be switched to ipi.  Excercise did help some for fatigue and sleep issues.  Water tasted horribly sweet to my husband so he added lots of fresh lemon juice to help with that and stay hydrated.  The other thing my husband had (but I don't know if this accompanies your husband's rash) was major itching and skin issues for which oatmeal baths, Gold Bond medicated powder and benedryl helped.

                Wish you the best.

                 

                 

                joy_
                Participant

                  Sorry to hear your husband is so miserable.  My husband had a lot of these side effects with Zelboraf too.  In his case, the side effects did start to improve on about the 5th week.  He was at the full dosage the entire time too and started to feel better only to be switched to ipi.  Excercise did help some for fatigue and sleep issues.  Water tasted horribly sweet to my husband so he added lots of fresh lemon juice to help with that and stay hydrated.  The other thing my husband had (but I don't know if this accompanies your husband's rash) was major itching and skin issues for which oatmeal baths, Gold Bond medicated powder and benedryl helped.

                  Wish you the best.

                   

                   

                  joy_
                  Participant

                    Sorry to hear your husband is so miserable.  My husband had a lot of these side effects with Zelboraf too.  In his case, the side effects did start to improve on about the 5th week.  He was at the full dosage the entire time too and started to feel better only to be switched to ipi.  Excercise did help some for fatigue and sleep issues.  Water tasted horribly sweet to my husband so he added lots of fresh lemon juice to help with that and stay hydrated.  The other thing my husband had (but I don't know if this accompanies your husband's rash) was major itching and skin issues for which oatmeal baths, Gold Bond medicated powder and benedryl helped.

                    Wish you the best.

                     

                     

                    GAngel
                    Participant

                      Hello, I am sorry that your husband is suffering from so many side effects from Zelboraf.  My husband, Rudy, has had many of the same side effects that your husband is having since he began taking Zelboraf in Mid-March of 2013.  Initially he started at the full dosage of 4 tabs 2 times a day and was advised to discontinue taking the drug due to the severity of his side effects, the worst of which was extreme joint pain that rendered him unable to move at all, especially at night.  In addition, he developed big red bumps that were extremely tender to touch, the bottom of his feet and palms of his hands were so tender that he could not walk or use his hands. He also got the more  common side effects of all over body rash, sleeplessness, fatigue, tastes buds were altered, hair loss, atypical moles and skin tags (I’m sure I missed a few).  He took a two week break and then resumed at a lower dose of 3 tabs 2 times a day and has been able to tolerate this lower dosage one week on and one week off ever since.  He is able to manage all of the side effects when he alternates the drug this way and thank God, it is working for him as his tumors have shrunk significantly from 15 liver mets down to 4 and the ones that remain are much smaller, and his lymph node tumor shrunk to half of its original size.  The following is part of an article about how intermittent dosing may be beneficial to humans based upon a study done on mice:

                      “Researchers in California and Switzerland have discovered that melanomas that develop resistance to the anti-cancer drug vemurafenib (marketed as Zelboraf), also develop addiction to the drug, an observation that may have important implications for the lives of patients with late-stage disease. The team, based at UCSF, the Novartis Institutes for Biomedical Research (NIBR) in Emeryville, Calif., and University Hospital Zurich, found that one mechanism by which melanoma cells become resistant to vemurafenib also renders them “addicted” to the drug. As a result, the melanoma cells nefariously use vemurafenib to spur the growth of rapidly progressing, deadly and drug-resistant tumors.  Remarkably, intermittent dosing with vemurafenib prolonged the lives of mice with drug-resistant melanoma tumors,” said co-lead researcher Martin McMahon, PhD, the Efim Guzik Distinguished Professor of Cancer Biology in the UCSF Helen Diller Family Comprehensive Cancer Center. It is therefore possible that a similar approach may extend the effectiveness of the drug for people – an idea that awaits testing in clinical trials.”

                      In any event he will continue intermittent dosing until the two newly  FDA approved drugs that you mentioned,  a MEK inhibitor, trametinib, and a BRAF inhibitor, dabrafenib, become available as his oncologist has already written him prescriptions for the drugs. I contacted the manufacturer, GlaxoSmithKline,who told me to start looking for both drugs to be available as early as July of 2013 but the person I spoke to could not give me an exact date.   Not only are the results better but apparently the side effects are less severe, so we are hoping for both upon taking the new meds.  

                      I will pray for you and your husband and just know that he is not alone and for many the side effects while on Zelboraf do lessen in severity, the longer one takes the drug. 

                      God bless you.

                      Gina Rangel  

                      GAngel
                      Participant

                        Hello, I am sorry that your husband is suffering from so many side effects from Zelboraf.  My husband, Rudy, has had many of the same side effects that your husband is having since he began taking Zelboraf in Mid-March of 2013.  Initially he started at the full dosage of 4 tabs 2 times a day and was advised to discontinue taking the drug due to the severity of his side effects, the worst of which was extreme joint pain that rendered him unable to move at all, especially at night.  In addition, he developed big red bumps that were extremely tender to touch, the bottom of his feet and palms of his hands were so tender that he could not walk or use his hands. He also got the more  common side effects of all over body rash, sleeplessness, fatigue, tastes buds were altered, hair loss, atypical moles and skin tags (I’m sure I missed a few).  He took a two week break and then resumed at a lower dose of 3 tabs 2 times a day and has been able to tolerate this lower dosage one week on and one week off ever since.  He is able to manage all of the side effects when he alternates the drug this way and thank God, it is working for him as his tumors have shrunk significantly from 15 liver mets down to 4 and the ones that remain are much smaller, and his lymph node tumor shrunk to half of its original size.  The following is part of an article about how intermittent dosing may be beneficial to humans based upon a study done on mice:

                        “Researchers in California and Switzerland have discovered that melanomas that develop resistance to the anti-cancer drug vemurafenib (marketed as Zelboraf), also develop addiction to the drug, an observation that may have important implications for the lives of patients with late-stage disease. The team, based at UCSF, the Novartis Institutes for Biomedical Research (NIBR) in Emeryville, Calif., and University Hospital Zurich, found that one mechanism by which melanoma cells become resistant to vemurafenib also renders them “addicted” to the drug. As a result, the melanoma cells nefariously use vemurafenib to spur the growth of rapidly progressing, deadly and drug-resistant tumors.  Remarkably, intermittent dosing with vemurafenib prolonged the lives of mice with drug-resistant melanoma tumors,” said co-lead researcher Martin McMahon, PhD, the Efim Guzik Distinguished Professor of Cancer Biology in the UCSF Helen Diller Family Comprehensive Cancer Center. It is therefore possible that a similar approach may extend the effectiveness of the drug for people – an idea that awaits testing in clinical trials.”

                        In any event he will continue intermittent dosing until the two newly  FDA approved drugs that you mentioned,  a MEK inhibitor, trametinib, and a BRAF inhibitor, dabrafenib, become available as his oncologist has already written him prescriptions for the drugs. I contacted the manufacturer, GlaxoSmithKline,who told me to start looking for both drugs to be available as early as July of 2013 but the person I spoke to could not give me an exact date.   Not only are the results better but apparently the side effects are less severe, so we are hoping for both upon taking the new meds.  

                        I will pray for you and your husband and just know that he is not alone and for many the side effects while on Zelboraf do lessen in severity, the longer one takes the drug. 

                        God bless you.

                        Gina Rangel  

                        GAngel
                        Participant

                          Hello, I am sorry that your husband is suffering from so many side effects from Zelboraf.  My husband, Rudy, has had many of the same side effects that your husband is having since he began taking Zelboraf in Mid-March of 2013.  Initially he started at the full dosage of 4 tabs 2 times a day and was advised to discontinue taking the drug due to the severity of his side effects, the worst of which was extreme joint pain that rendered him unable to move at all, especially at night.  In addition, he developed big red bumps that were extremely tender to touch, the bottom of his feet and palms of his hands were so tender that he could not walk or use his hands. He also got the more  common side effects of all over body rash, sleeplessness, fatigue, tastes buds were altered, hair loss, atypical moles and skin tags (I’m sure I missed a few).  He took a two week break and then resumed at a lower dose of 3 tabs 2 times a day and has been able to tolerate this lower dosage one week on and one week off ever since.  He is able to manage all of the side effects when he alternates the drug this way and thank God, it is working for him as his tumors have shrunk significantly from 15 liver mets down to 4 and the ones that remain are much smaller, and his lymph node tumor shrunk to half of its original size.  The following is part of an article about how intermittent dosing may be beneficial to humans based upon a study done on mice:

                          “Researchers in California and Switzerland have discovered that melanomas that develop resistance to the anti-cancer drug vemurafenib (marketed as Zelboraf), also develop addiction to the drug, an observation that may have important implications for the lives of patients with late-stage disease. The team, based at UCSF, the Novartis Institutes for Biomedical Research (NIBR) in Emeryville, Calif., and University Hospital Zurich, found that one mechanism by which melanoma cells become resistant to vemurafenib also renders them “addicted” to the drug. As a result, the melanoma cells nefariously use vemurafenib to spur the growth of rapidly progressing, deadly and drug-resistant tumors.  Remarkably, intermittent dosing with vemurafenib prolonged the lives of mice with drug-resistant melanoma tumors,” said co-lead researcher Martin McMahon, PhD, the Efim Guzik Distinguished Professor of Cancer Biology in the UCSF Helen Diller Family Comprehensive Cancer Center. It is therefore possible that a similar approach may extend the effectiveness of the drug for people – an idea that awaits testing in clinical trials.”

                          In any event he will continue intermittent dosing until the two newly  FDA approved drugs that you mentioned,  a MEK inhibitor, trametinib, and a BRAF inhibitor, dabrafenib, become available as his oncologist has already written him prescriptions for the drugs. I contacted the manufacturer, GlaxoSmithKline,who told me to start looking for both drugs to be available as early as July of 2013 but the person I spoke to could not give me an exact date.   Not only are the results better but apparently the side effects are less severe, so we are hoping for both upon taking the new meds.  

                          I will pray for you and your husband and just know that he is not alone and for many the side effects while on Zelboraf do lessen in severity, the longer one takes the drug. 

                          God bless you.

                          Gina Rangel  

                          GAngel
                          Participant

                            Hello, I am sorry that your husband is suffering from so many side effects from Zelboraf.  My husband, Rudy, has had many of the same side effects that your husband is having since he began taking Zelboraf in Mid-March of 2013.  Initially he started at the full dosage of 4 tabs 2 times a day and was advised to discontinue taking the drug due to the severity of his side effects, the worst of which was extreme joint pain that rendered him unable to move at all, especially at night.  In addition, he developed big red bumps that were extremely tender to touch, the bottom of his feet and palms of his hands were so tender that he could not walk or use his hands. He also got the more  common side effects of all over body rash, sleeplessness, fatigue, tastes buds were altered, hair loss, atypical moles and skin tags (I’m sure I missed a few).  He took a two week break and then resumed at a lower dose of 3 tabs 2 times a day and has been able to tolerate this lower dosage one week on and one week off ever since.  He is able to manage all of the side effects when he alternates the drug this way and thank God, it is working for him as his tumors have shrunk significantly from 15 liver mets down to 4 and the ones that remain are much smaller, and his lymph node tumor shrunk to half of its original size.  The following is part of an article about how intermittent dosing may be beneficial to humans based upon a study done on mice:

                            “Researchers in California and Switzerland have discovered that melanomas that develop resistance to the anti-cancer drug vemurafenib (marketed as Zelboraf), also develop addiction to the drug, an observation that may have important implications for the lives of patients with late-stage disease. The team, based at UCSF, the Novartis Institutes for Biomedical Research (NIBR) in Emeryville, Calif., and University Hospital Zurich, found that one mechanism by which melanoma cells become resistant to vemurafenib also renders them “addicted” to the drug. As a result, the melanoma cells nefariously use vemurafenib to spur the growth of rapidly progressing, deadly and drug-resistant tumors.  Remarkably, intermittent dosing with vemurafenib prolonged the lives of mice with drug-resistant melanoma tumors,” said co-lead researcher Martin McMahon, PhD, the Efim Guzik Distinguished Professor of Cancer Biology in the UCSF Helen Diller Family Comprehensive Cancer Center. It is therefore possible that a similar approach may extend the effectiveness of the drug for people – an idea that awaits testing in clinical trials.”

                            In any event he will continue intermittent dosing until the two newly  FDA approved drugs that you mentioned,  a MEK inhibitor, trametinib, and a BRAF inhibitor, dabrafenib, become available as his oncologist has already written him prescriptions for the drugs. I contacted the manufacturer, GlaxoSmithKline,who told me to start looking for both drugs to be available as early as July of 2013 but the person I spoke to could not give me an exact date.   Not only are the results better but apparently the side effects are less severe, so we are hoping for both upon taking the new meds.  

                            I will pray for you and your husband and just know that he is not alone and for many the side effects while on Zelboraf do lessen in severity, the longer one takes the drug. 

                            God bless you.

                            Gina Rangel  

                            GAngel
                            Participant

                              Hello, I am sorry that your husband is suffering from so many side effects from Zelboraf.  My husband, Rudy, has had many of the same side effects that your husband is having since he began taking Zelboraf in Mid-March of 2013.  Initially he started at the full dosage of 4 tabs 2 times a day and was advised to discontinue taking the drug due to the severity of his side effects, the worst of which was extreme joint pain that rendered him unable to move at all, especially at night.  In addition, he developed big red bumps that were extremely tender to touch, the bottom of his feet and palms of his hands were so tender that he could not walk or use his hands. He also got the more  common side effects of all over body rash, sleeplessness, fatigue, tastes buds were altered, hair loss, atypical moles and skin tags (I’m sure I missed a few).  He took a two week break and then resumed at a lower dose of 3 tabs 2 times a day and has been able to tolerate this lower dosage one week on and one week off ever since.  He is able to manage all of the side effects when he alternates the drug this way and thank God, it is working for him as his tumors have shrunk significantly from 15 liver mets down to 4 and the ones that remain are much smaller, and his lymph node tumor shrunk to half of its original size.  The following is part of an article about how intermittent dosing may be beneficial to humans based upon a study done on mice:

                              “Researchers in California and Switzerland have discovered that melanomas that develop resistance to the anti-cancer drug vemurafenib (marketed as Zelboraf), also develop addiction to the drug, an observation that may have important implications for the lives of patients with late-stage disease. The team, based at UCSF, the Novartis Institutes for Biomedical Research (NIBR) in Emeryville, Calif., and University Hospital Zurich, found that one mechanism by which melanoma cells become resistant to vemurafenib also renders them “addicted” to the drug. As a result, the melanoma cells nefariously use vemurafenib to spur the growth of rapidly progressing, deadly and drug-resistant tumors.  Remarkably, intermittent dosing with vemurafenib prolonged the lives of mice with drug-resistant melanoma tumors,” said co-lead researcher Martin McMahon, PhD, the Efim Guzik Distinguished Professor of Cancer Biology in the UCSF Helen Diller Family Comprehensive Cancer Center. It is therefore possible that a similar approach may extend the effectiveness of the drug for people – an idea that awaits testing in clinical trials.”

                              In any event he will continue intermittent dosing until the two newly  FDA approved drugs that you mentioned,  a MEK inhibitor, trametinib, and a BRAF inhibitor, dabrafenib, become available as his oncologist has already written him prescriptions for the drugs. I contacted the manufacturer, GlaxoSmithKline,who told me to start looking for both drugs to be available as early as July of 2013 but the person I spoke to could not give me an exact date.   Not only are the results better but apparently the side effects are less severe, so we are hoping for both upon taking the new meds.  

                              I will pray for you and your husband and just know that he is not alone and for many the side effects while on Zelboraf do lessen in severity, the longer one takes the drug. 

                              God bless you.

                              Gina Rangel  

                              GAngel
                              Participant

                                Hello, I am sorry that your husband is suffering from so many side effects from Zelboraf.  My husband, Rudy, has had many of the same side effects that your husband is having since he began taking Zelboraf in Mid-March of 2013.  Initially he started at the full dosage of 4 tabs 2 times a day and was advised to discontinue taking the drug due to the severity of his side effects, the worst of which was extreme joint pain that rendered him unable to move at all, especially at night.  In addition, he developed big red bumps that were extremely tender to touch, the bottom of his feet and palms of his hands were so tender that he could not walk or use his hands. He also got the more  common side effects of all over body rash, sleeplessness, fatigue, tastes buds were altered, hair loss, atypical moles and skin tags (I’m sure I missed a few).  He took a two week break and then resumed at a lower dose of 3 tabs 2 times a day and has been able to tolerate this lower dosage one week on and one week off ever since.  He is able to manage all of the side effects when he alternates the drug this way and thank God, it is working for him as his tumors have shrunk significantly from 15 liver mets down to 4 and the ones that remain are much smaller, and his lymph node tumor shrunk to half of its original size.  The following is part of an article about how intermittent dosing may be beneficial to humans based upon a study done on mice:

                                “Researchers in California and Switzerland have discovered that melanomas that develop resistance to the anti-cancer drug vemurafenib (marketed as Zelboraf), also develop addiction to the drug, an observation that may have important implications for the lives of patients with late-stage disease. The team, based at UCSF, the Novartis Institutes for Biomedical Research (NIBR) in Emeryville, Calif., and University Hospital Zurich, found that one mechanism by which melanoma cells become resistant to vemurafenib also renders them “addicted” to the drug. As a result, the melanoma cells nefariously use vemurafenib to spur the growth of rapidly progressing, deadly and drug-resistant tumors.  Remarkably, intermittent dosing with vemurafenib prolonged the lives of mice with drug-resistant melanoma tumors,” said co-lead researcher Martin McMahon, PhD, the Efim Guzik Distinguished Professor of Cancer Biology in the UCSF Helen Diller Family Comprehensive Cancer Center. It is therefore possible that a similar approach may extend the effectiveness of the drug for people – an idea that awaits testing in clinical trials.”

                                In any event he will continue intermittent dosing until the two newly  FDA approved drugs that you mentioned,  a MEK inhibitor, trametinib, and a BRAF inhibitor, dabrafenib, become available as his oncologist has already written him prescriptions for the drugs. I contacted the manufacturer, GlaxoSmithKline,who told me to start looking for both drugs to be available as early as July of 2013 but the person I spoke to could not give me an exact date.   Not only are the results better but apparently the side effects are less severe, so we are hoping for both upon taking the new meds.  

                                I will pray for you and your husband and just know that he is not alone and for many the side effects while on Zelboraf do lessen in severity, the longer one takes the drug. 

                                God bless you.

                                Gina Rangel  

                                out4air
                                Participant
                                  This is extremely helpful, thank you so much!
                                  out4air
                                  Participant
                                    This is extremely helpful, thank you so much!
                                    out4air
                                    Participant
                                      This is extremely helpful, thank you so much!
                                      out4air
                                      Participant
                                        This is extremely helpful, thank you so much! I will pray for your husband as well. Great news than your treatment plan is working.
                                        out4air
                                        Participant
                                          This is extremely helpful, thank you so much! I will pray for your husband as well. Great news than your treatment plan is working.
                                          out4air
                                          Participant
                                            This is extremely helpful, thank you so much! I will pray for your husband as well. Great news than your treatment plan is working.
                                            out4air
                                            Participant
                                              This is extremely helpful, thank you so much!
                                              out4air
                                              Participant
                                                This is extremely helpful, thank you so much!
                                                out4air
                                                Participant
                                                  This is extremely helpful, thank you so much!
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