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New to Tafinlar/ side effects?
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New to Tafinlar/ side effects?

› Forums › General Melanoma Community › New to Tafinlar/ side effects?

  • Post
    • October 6, 2013 at 9:20 pm
    Judy D
    Participant
      I have been on Tafinlar for4 1/2 days. Experiencing headaches and severe pain on bottoms of my feet. I do have neuropathy but this feels different. Has anyone else experienced anything like this? If so what helped? Thanks for all the previous help.
      Judy
    Viewing 5 reply threads
    • Replies
        • October 7, 2013 at 12:29 am
        aldakota22
        Participant

          Sorry to hear of your side affects while on "T".I am on it for just over 5 weeks now and did not experience anything like you have.For the first week I only needed tylenol for a minor headache.Do have minor joint pain in the hands and shoulder.Nothing too serious.Hopefully your pain will lessen in time.Maybe some others may add their input on "T". Beat the Beast.     Al

          • October 7, 2013 at 12:29 am
          aldakota22
          Participant

            Sorry to hear of your side affects while on "T".I am on it for just over 5 weeks now and did not experience anything like you have.For the first week I only needed tylenol for a minor headache.Do have minor joint pain in the hands and shoulder.Nothing too serious.Hopefully your pain will lessen in time.Maybe some others may add their input on "T". Beat the Beast.     Al

            • October 7, 2013 at 12:29 am
            aldakota22
            Participant

              Sorry to hear of your side affects while on "T".I am on it for just over 5 weeks now and did not experience anything like you have.For the first week I only needed tylenol for a minor headache.Do have minor joint pain in the hands and shoulder.Nothing too serious.Hopefully your pain will lessen in time.Maybe some others may add their input on "T". Beat the Beast.     Al

              • October 7, 2013 at 10:17 am
              Mat
              Participant
                I’ve been on the GSK combo for 9 weeks. Side effects have been relatively minor. When I have had pain–and I do occasionally get it on the bottom of my feet as you describe–it usually resolves on its own within a day or two. Consider asking your doctor to add the Mekinist.
                  • October 7, 2013 at 12:29 pm
                  Judy D
                  Participant
                    Thanks for the info what is Mekinist?
                    • October 7, 2013 at 10:21 pm
                    POW
                    Participant

                      Judy, for a discussion of Mekinist read the thread that Josh started a couple of weeks ago titled "BRAF Mutation". It's at:

                      http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/braf-mutation

                      • October 7, 2013 at 10:21 pm
                      POW
                      Participant

                        Judy, for a discussion of Mekinist read the thread that Josh started a couple of weeks ago titled "BRAF Mutation". It's at:

                        http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/braf-mutation

                        • October 7, 2013 at 10:21 pm
                        POW
                        Participant

                          Judy, for a discussion of Mekinist read the thread that Josh started a couple of weeks ago titled "BRAF Mutation". It's at:

                          http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/braf-mutation

                          • October 8, 2013 at 12:32 am
                          NYKaren
                          Participant
                            Darafinib and Menkist are the 2 drugs that make Tafinlar. Sometimes some doctors will add them one at a time,(not sure why) but if your label says “Tafinlar” you are already on both. Yes, the foot pain is a known side-effect, I don’t know what to do about it; I only had it mildly and it’s almost gone; what does your doctor say?
                            • October 8, 2013 at 1:17 am
                            POW
                            Participant

                              Karen, where did you get the idea that Tafinlar is a combination of two drugs? It's not.

                              According to a GSK press release: "The U.S. Food and Drug Administration today approved two new drugs, Tafinlar (dabrafenib) and Mekinist (trametinib), for patients with advanced (metastatic) or unresectable (cannot be removed by surgery) melanoma, the most dangerous type of skin cancer."

                              Right now, the FDA has only approved Tafinlar and Mekinist to be prescribed and used seperately– one or the other. The combination of the two has been fast-tracked for FDA approval, but that hasn't happened yet. 

                              It's true that physicians can prescribe both drugs together if they want to go "off label" but most insurance companies will not pay for both drugs at once unless and until the combination gets FDA approval.

                              • October 8, 2013 at 1:21 am
                              Mat
                              Participant
                                POW is absolutely correct. These are 2 different drugs. Tafinlar does not “include” Mekinist.
                                • October 8, 2013 at 1:21 am
                                Mat
                                Participant
                                  POW is absolutely correct. These are 2 different drugs. Tafinlar does not “include” Mekinist.
                                  • October 8, 2013 at 1:21 am
                                  Mat
                                  Participant
                                    POW is absolutely correct. These are 2 different drugs. Tafinlar does not “include” Mekinist.
                                    • October 8, 2013 at 1:17 am
                                    POW
                                    Participant

                                      Karen, where did you get the idea that Tafinlar is a combination of two drugs? It's not.

                                      According to a GSK press release: "The U.S. Food and Drug Administration today approved two new drugs, Tafinlar (dabrafenib) and Mekinist (trametinib), for patients with advanced (metastatic) or unresectable (cannot be removed by surgery) melanoma, the most dangerous type of skin cancer."

                                      Right now, the FDA has only approved Tafinlar and Mekinist to be prescribed and used seperately– one or the other. The combination of the two has been fast-tracked for FDA approval, but that hasn't happened yet. 

                                      It's true that physicians can prescribe both drugs together if they want to go "off label" but most insurance companies will not pay for both drugs at once unless and until the combination gets FDA approval.

                                      • October 8, 2013 at 1:17 am
                                      POW
                                      Participant

                                        Karen, where did you get the idea that Tafinlar is a combination of two drugs? It's not.

                                        According to a GSK press release: "The U.S. Food and Drug Administration today approved two new drugs, Tafinlar (dabrafenib) and Mekinist (trametinib), for patients with advanced (metastatic) or unresectable (cannot be removed by surgery) melanoma, the most dangerous type of skin cancer."

                                        Right now, the FDA has only approved Tafinlar and Mekinist to be prescribed and used seperately– one or the other. The combination of the two has been fast-tracked for FDA approval, but that hasn't happened yet. 

                                        It's true that physicians can prescribe both drugs together if they want to go "off label" but most insurance companies will not pay for both drugs at once unless and until the combination gets FDA approval.

                                        • October 8, 2013 at 12:32 am
                                        NYKaren
                                        Participant
                                          Darafinib and Menkist are the 2 drugs that make Tafinlar. Sometimes some doctors will add them one at a time,(not sure why) but if your label says “Tafinlar” you are already on both. Yes, the foot pain is a known side-effect, I don’t know what to do about it; I only had it mildly and it’s almost gone; what does your doctor say?
                                          • October 8, 2013 at 12:32 am
                                          NYKaren
                                          Participant
                                            Darafinib and Menkist are the 2 drugs that make Tafinlar. Sometimes some doctors will add them one at a time,(not sure why) but if your label says “Tafinlar” you are already on both. Yes, the foot pain is a known side-effect, I don’t know what to do about it; I only had it mildly and it’s almost gone; what does your doctor say?
                                            • October 8, 2013 at 7:28 am
                                            bkinman
                                            Participant
                                              I have beenon “T” since 8/22. Headaches have been my biggest problem until I got to full dose then i startedhaving chills and fevers. Backed me down for a couple weeks went back to full dose and added MEK and am in hospital now for fever chills and passing out. They want to rule out sepsis. Take lortab 10 for headaches. They are not as severe as the first time on full dose. 2 II
                                              • October 9, 2013 at 12:12 am
                                              NYKaren
                                              Participant
                                                Yes, you are absolutely right. I am sorry. I was way too tired last night.
                                                Karen

                                                • October 9, 2013 at 12:12 am
                                                NYKaren
                                                Participant
                                                  Yes, you are absolutely right. I am sorry. I was way too tired last night.
                                                  Karen

                                                  • October 9, 2013 at 12:14 am
                                                  NYKaren
                                                  Participant
                                                    Does somebody know that most insurances won’t pay? Mine does, and my onc says every specialty pharmacy she’s seen does too.
                                                    • October 9, 2013 at 12:14 am
                                                    NYKaren
                                                    Participant
                                                      Does somebody know that most insurances won’t pay? Mine does, and my onc says every specialty pharmacy she’s seen does too.
                                                      • October 9, 2013 at 1:47 am
                                                      POW
                                                      Participant

                                                        What is a "specialty pharmacy"? Do you mean a compounding pharmacy? And what does the pharmacy have to do with whether or not an insurance company will cover the drug? I guess I'm just not understanding the situation.

                                                        • October 9, 2013 at 1:47 am
                                                        POW
                                                        Participant

                                                          What is a "specialty pharmacy"? Do you mean a compounding pharmacy? And what does the pharmacy have to do with whether or not an insurance company will cover the drug? I guess I'm just not understanding the situation.

                                                          • October 9, 2013 at 10:20 am
                                                          NYKaren
                                                          Participant
                                                            pharmacy that specializes in drugs for rare or chronic conditions. Medco, CVS Caremark, OptumRx, etc.
                                                            On my insurance, Zel and Tafinlar are both delivered that way.
                                                            • October 9, 2013 at 10:20 am
                                                            NYKaren
                                                            Participant
                                                              pharmacy that specializes in drugs for rare or chronic conditions. Medco, CVS Caremark, OptumRx, etc.
                                                              On my insurance, Zel and Tafinlar are both delivered that way.
                                                              • October 9, 2013 at 10:20 am
                                                              NYKaren
                                                              Participant
                                                                pharmacy that specializes in drugs for rare or chronic conditions. Medco, CVS Caremark, OptumRx, etc.
                                                                On my insurance, Zel and Tafinlar are both delivered that way.
                                                                • October 9, 2013 at 1:47 am
                                                                POW
                                                                Participant

                                                                  What is a "specialty pharmacy"? Do you mean a compounding pharmacy? And what does the pharmacy have to do with whether or not an insurance company will cover the drug? I guess I'm just not understanding the situation.

                                                                  • October 15, 2013 at 5:46 am
                                                                  bkinman
                                                                  Participant
                                                                    I have BCBS of AL. I have to go through speciality pharmacy, but Zelboraf, tafinlar and MEK have all been covered. I do know my employer is self insured. Don’t know if makes a difference.
                                                                    • October 15, 2013 at 5:46 am
                                                                    bkinman
                                                                    Participant
                                                                      I have BCBS of AL. I have to go through speciality pharmacy, but Zelboraf, tafinlar and MEK have all been covered. I do know my employer is self insured. Don’t know if makes a difference.
                                                                      • October 15, 2013 at 5:46 am
                                                                      bkinman
                                                                      Participant
                                                                        I have BCBS of AL. I have to go through speciality pharmacy, but Zelboraf, tafinlar and MEK have all been covered. I do know my employer is self insured. Don’t know if makes a difference.
                                                                        • October 9, 2013 at 12:14 am
                                                                        NYKaren
                                                                        Participant
                                                                          Does somebody know that most insurances won’t pay? Mine does, and my onc says every specialty pharmacy she’s seen does too.
                                                                          • October 9, 2013 at 12:12 am
                                                                          NYKaren
                                                                          Participant
                                                                            Yes, you are absolutely right. I am sorry. I was way too tired last night.
                                                                            Karen

                                                                            • October 9, 2013 at 3:55 am
                                                                            Judy D
                                                                            Participant
                                                                              Sorry to hear you are having these issues hoping they will be resolved soon for you. Keep fighting, we can beat this beast. I will lift you up in prayer
                                                                              • October 9, 2013 at 3:55 am
                                                                              Judy D
                                                                              Participant
                                                                                Sorry to hear you are having these issues hoping they will be resolved soon for you. Keep fighting, we can beat this beast. I will lift you up in prayer
                                                                                • October 9, 2013 at 3:55 am
                                                                                Judy D
                                                                                Participant
                                                                                  Sorry to hear you are having these issues hoping they will be resolved soon for you. Keep fighting, we can beat this beast. I will lift you up in prayer
                                                                                  • October 15, 2013 at 5:40 am
                                                                                  bkinman
                                                                                  Participant
                                                                                    Wanted to update, Dr decided chills and fever this time were due to cdiff return. Headaches are better as well as painful rash.
                                                                                    • October 15, 2013 at 5:40 am
                                                                                    bkinman
                                                                                    Participant
                                                                                      Wanted to update, Dr decided chills and fever this time were due to cdiff return. Headaches are better as well as painful rash.
                                                                                      • October 15, 2013 at 5:40 am
                                                                                      bkinman
                                                                                      Participant
                                                                                        Wanted to update, Dr decided chills and fever this time were due to cdiff return. Headaches are better as well as painful rash.
                                                                                        • October 8, 2013 at 7:28 am
                                                                                        bkinman
                                                                                        Participant
                                                                                          I have beenon “T” since 8/22. Headaches have been my biggest problem until I got to full dose then i startedhaving chills and fevers. Backed me down for a couple weeks went back to full dose and added MEK and am in hospital now for fever chills and passing out. They want to rule out sepsis. Take lortab 10 for headaches. They are not as severe as the first time on full dose. 2 II
                                                                                          • October 8, 2013 at 7:28 am
                                                                                          bkinman
                                                                                          Participant
                                                                                            I have beenon “T” since 8/22. Headaches have been my biggest problem until I got to full dose then i startedhaving chills and fevers. Backed me down for a couple weeks went back to full dose and added MEK and am in hospital now for fever chills and passing out. They want to rule out sepsis. Take lortab 10 for headaches. They are not as severe as the first time on full dose. 2 II
                                                                                            • October 7, 2013 at 12:29 pm
                                                                                            Judy D
                                                                                            Participant
                                                                                              Thanks for the info what is Mekinist?
                                                                                              • October 7, 2013 at 12:29 pm
                                                                                              Judy D
                                                                                              Participant
                                                                                                Thanks for the info what is Mekinist?
                                                                                              • October 7, 2013 at 10:17 am
                                                                                              Mat
                                                                                              Participant
                                                                                                I’ve been on the GSK combo for 9 weeks. Side effects have been relatively minor. When I have had pain–and I do occasionally get it on the bottom of my feet as you describe–it usually resolves on its own within a day or two. Consider asking your doctor to add the Mekinist.
                                                                                                • October 7, 2013 at 10:17 am
                                                                                                Mat
                                                                                                Participant
                                                                                                  I’ve been on the GSK combo for 9 weeks. Side effects have been relatively minor. When I have had pain–and I do occasionally get it on the bottom of my feet as you describe–it usually resolves on its own within a day or two. Consider asking your doctor to add the Mekinist.
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