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BRAF V600

Forums General Melanoma Community BRAF V600

  • Post
    jaco
    Participant

      I'm Stage IV, my Doctor has prescribed I start the combo drugs- Tafinlar + Trametinib.  We are waiting for insurance to approve. Little nervous on starting this drug, I was told by the nurse that the side affects can go away after two weeks.  Any insight on what I can expect, I have an office job and just wondering if I will need to take time off?

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    • Replies
        arthurjedi007
        Participant

          I would play the side affects by ear. Some people like me had fevers around 103. Some have major sun sensitivity. Some have gi issues. Some have pretty much no side affects. It really depends. The combo actually has less side affects than they have individually from what I've read.

          However if your company is like some rumors mine was there may be some higher ups that want to get rid of you. Fortunately when I had bad side affects from zometa my boss said to go on short term disability instead of using vacation or sick days. That way I didn't lose the company long term benefits of 2/3 salary and stuff.

          Artie

          arthurjedi007
          Participant

            I would play the side affects by ear. Some people like me had fevers around 103. Some have major sun sensitivity. Some have gi issues. Some have pretty much no side affects. It really depends. The combo actually has less side affects than they have individually from what I've read.

            However if your company is like some rumors mine was there may be some higher ups that want to get rid of you. Fortunately when I had bad side affects from zometa my boss said to go on short term disability instead of using vacation or sick days. That way I didn't lose the company long term benefits of 2/3 salary and stuff.

            Artie

            arthurjedi007
            Participant

              I would play the side affects by ear. Some people like me had fevers around 103. Some have major sun sensitivity. Some have gi issues. Some have pretty much no side affects. It really depends. The combo actually has less side affects than they have individually from what I've read.

              However if your company is like some rumors mine was there may be some higher ups that want to get rid of you. Fortunately when I had bad side affects from zometa my boss said to go on short term disability instead of using vacation or sick days. That way I didn't lose the company long term benefits of 2/3 salary and stuff.

              Artie

              Patina
              Participant

                Is there a reason you are not starting with Yervoy of Keytruda first.

                  jaco
                  Participant

                    Not sure, this is the treatment plan my oncologist started, with the BRAF V600 he thought this would be a much better choice. I lime the thought that I will be taking the pills at home, less travel time to Dr, office.

                    Patina
                    Participant

                      Hi Jaco,

                      My Mom was in your position.  She was diagnosed with Stage IV and then later with brain mets before any treatment. She was 77 and is now 79.

                      We had the option of the combo you were recommended or to start ipi (aka Yervoy). (We were trying to get her into a clinical trail, but could not do that because of the brain mets.) Looking at our options after gamma knife radiation we decided to go with Yervoy. This was because we knew there was a good chance the combo would work, but Yervoy could have a synergistic effect with the gamma knife radiation.  It was the best decision we made and my Mom still has that option open to use.

                      As one of the other posters inferred, you might not be seeing a melanoma specialist and you need to meet with one or more who is a expert at the very least for a second or third opinion.  They might well not recommended what your current doctor has and most general oncologists don't have enough experience with melanoma and you need someone with a lot of experience. Personally, I would not move forward with any treatment until you have seen a melanoma specialist and they go over other options with you.

                      You do not mention the scans taken ie PET, CT and MRI of your brain. Be sure you have had all of these done and take any CDs and written reports to your appointments for a second and third opinion. – Make the doctor show you where the cancer is in the images and view the MRI with you and go over all options.

                      – It was only at my Mom's 3rd opinion that we found out that someone missed 3 brain mets (brain tumors) my Mom had. She would be dead if we had not made that 3rd appointment and would have lost her cognitive abilities quickly. We only saw melanoma specialists and what I found was that it is important to ensure that your oncologists views everything with you, because radiologists can make mistakes.  – BTW My Mom is doing well and we fully expect her to be here for a long time, even after having 26 brain mets treated. 

                      Patina
                      Participant

                        Hi Jaco,

                        My Mom was in your position.  She was diagnosed with Stage IV and then later with brain mets before any treatment. She was 77 and is now 79.

                        We had the option of the combo you were recommended or to start ipi (aka Yervoy). (We were trying to get her into a clinical trail, but could not do that because of the brain mets.) Looking at our options after gamma knife radiation we decided to go with Yervoy. This was because we knew there was a good chance the combo would work, but Yervoy could have a synergistic effect with the gamma knife radiation.  It was the best decision we made and my Mom still has that option open to use.

                        As one of the other posters inferred, you might not be seeing a melanoma specialist and you need to meet with one or more who is a expert at the very least for a second or third opinion.  They might well not recommended what your current doctor has and most general oncologists don't have enough experience with melanoma and you need someone with a lot of experience. Personally, I would not move forward with any treatment until you have seen a melanoma specialist and they go over other options with you.

                        You do not mention the scans taken ie PET, CT and MRI of your brain. Be sure you have had all of these done and take any CDs and written reports to your appointments for a second and third opinion. – Make the doctor show you where the cancer is in the images and view the MRI with you and go over all options.

                        – It was only at my Mom's 3rd opinion that we found out that someone missed 3 brain mets (brain tumors) my Mom had. She would be dead if we had not made that 3rd appointment and would have lost her cognitive abilities quickly. We only saw melanoma specialists and what I found was that it is important to ensure that your oncologists views everything with you, because radiologists can make mistakes.  – BTW My Mom is doing well and we fully expect her to be here for a long time, even after having 26 brain mets treated. 

                        Patina
                        Participant

                          Hi Jaco,

                          My Mom was in your position.  She was diagnosed with Stage IV and then later with brain mets before any treatment. She was 77 and is now 79.

                          We had the option of the combo you were recommended or to start ipi (aka Yervoy). (We were trying to get her into a clinical trail, but could not do that because of the brain mets.) Looking at our options after gamma knife radiation we decided to go with Yervoy. This was because we knew there was a good chance the combo would work, but Yervoy could have a synergistic effect with the gamma knife radiation.  It was the best decision we made and my Mom still has that option open to use.

                          As one of the other posters inferred, you might not be seeing a melanoma specialist and you need to meet with one or more who is a expert at the very least for a second or third opinion.  They might well not recommended what your current doctor has and most general oncologists don't have enough experience with melanoma and you need someone with a lot of experience. Personally, I would not move forward with any treatment until you have seen a melanoma specialist and they go over other options with you.

                          You do not mention the scans taken ie PET, CT and MRI of your brain. Be sure you have had all of these done and take any CDs and written reports to your appointments for a second and third opinion. – Make the doctor show you where the cancer is in the images and view the MRI with you and go over all options.

                          – It was only at my Mom's 3rd opinion that we found out that someone missed 3 brain mets (brain tumors) my Mom had. She would be dead if we had not made that 3rd appointment and would have lost her cognitive abilities quickly. We only saw melanoma specialists and what I found was that it is important to ensure that your oncologists views everything with you, because radiologists can make mistakes.  – BTW My Mom is doing well and we fully expect her to be here for a long time, even after having 26 brain mets treated. 

                          jaco
                          Participant

                            Not sure, this is the treatment plan my oncologist started, with the BRAF V600 he thought this would be a much better choice. I lime the thought that I will be taking the pills at home, less travel time to Dr, office.

                            jaco
                            Participant

                              Not sure, this is the treatment plan my oncologist started, with the BRAF V600 he thought this would be a much better choice. I lime the thought that I will be taking the pills at home, less travel time to Dr, office.

                            Patina
                            Participant

                              Is there a reason you are not starting with Yervoy of Keytruda first.

                              Patina
                              Participant

                                Is there a reason you are not starting with Yervoy of Keytruda first.

                                AshleyS
                                Participant

                                  Hey Jaco,

                                  By snooping around your profile, I'm assuming you live in ND or MN. I live in north central ND. One of the first things people on this board will tell you is to find a melanoma specialist. North Dakota does not have any. I did go to Mayo Clinic but was never set up with a specialist. After they told me I only have a year left to live, I decided to go elsewhere. My family moved to Texas for three months I and I believe I am still here because of M.D. Anderson. 

                                  I am not BRAF positive; however, I've heard that it's a good idea to wait for those drugs until you've failed some of the newer medications. I'm currently on Odivo and only have a 1 1/2 hour infusion every other week. Keytruda is even less. 

                                  It's your decision, but you may want to do more research.

                                  Ashley

                                   

                                    jaco
                                    Participant

                                      Ashley,

                                      By chance are you a Bison cheerleader? If so I have been praying for you. I'm originally  from Rugby, small world.

                                      I have been doing alot of research on the combo drug,  I feel comfortable withmy decision. Just a little apprehensive on drugs going into my body and side affects. I refuse to be given a timeline. It is tough to find a malenoma specialist in northern Mn, found a good Dr in Fargo that I trust I think that is also peace of mind.

                                      jaco
                                      Participant

                                        Ashley,

                                        By chance are you a Bison cheerleader? If so I have been praying for you. I'm originally  from Rugby, small world.

                                        I have been doing alot of research on the combo drug,  I feel comfortable withmy decision. Just a little apprehensive on drugs going into my body and side affects. I refuse to be given a timeline. It is tough to find a malenoma specialist in northern Mn, found a good Dr in Fargo that I trust I think that is also peace of mind.

                                        jaco
                                        Participant

                                          Ashley,

                                          By chance are you a Bison cheerleader? If so I have been praying for you. I'm originally  from Rugby, small world.

                                          I have been doing alot of research on the combo drug,  I feel comfortable withmy decision. Just a little apprehensive on drugs going into my body and side affects. I refuse to be given a timeline. It is tough to find a malenoma specialist in northern Mn, found a good Dr in Fargo that I trust I think that is also peace of mind.

                                          AshleyS
                                          Participant

                                            Yep, that's me. Well I hope this works for you. Lots of prayers and fingers crossed!

                                            AshleyS
                                            Participant

                                              Yep, that's me. Well I hope this works for you. Lots of prayers and fingers crossed!

                                              AshleyS
                                              Participant

                                                Yep, that's me. Well I hope this works for you. Lots of prayers and fingers crossed!

                                              AshleyS
                                              Participant

                                                Hey Jaco,

                                                By snooping around your profile, I'm assuming you live in ND or MN. I live in north central ND. One of the first things people on this board will tell you is to find a melanoma specialist. North Dakota does not have any. I did go to Mayo Clinic but was never set up with a specialist. After they told me I only have a year left to live, I decided to go elsewhere. My family moved to Texas for three months I and I believe I am still here because of M.D. Anderson. 

                                                I am not BRAF positive; however, I've heard that it's a good idea to wait for those drugs until you've failed some of the newer medications. I'm currently on Odivo and only have a 1 1/2 hour infusion every other week. Keytruda is even less. 

                                                It's your decision, but you may want to do more research.

                                                Ashley

                                                 

                                                AshleyS
                                                Participant

                                                  Hey Jaco,

                                                  By snooping around your profile, I'm assuming you live in ND or MN. I live in north central ND. One of the first things people on this board will tell you is to find a melanoma specialist. North Dakota does not have any. I did go to Mayo Clinic but was never set up with a specialist. After they told me I only have a year left to live, I decided to go elsewhere. My family moved to Texas for three months I and I believe I am still here because of M.D. Anderson. 

                                                  I am not BRAF positive; however, I've heard that it's a good idea to wait for those drugs until you've failed some of the newer medications. I'm currently on Odivo and only have a 1 1/2 hour infusion every other week. Keytruda is even less. 

                                                  It's your decision, but you may want to do more research.

                                                  Ashley

                                                   

                                                  Hayden30
                                                  Participant

                                                    I've been on that combo for about a month and a half. The first week was so bad with gi side effects and nausea, but slowly they started getting better and now I have no side effects at all. I feel great and the combo is working. I hope you have very minimal side effects, but If you do at first please stick with it and know that things will get better. 

                                                    Hayden30
                                                    Participant

                                                      I've been on that combo for about a month and a half. The first week was so bad with gi side effects and nausea, but slowly they started getting better and now I have no side effects at all. I feel great and the combo is working. I hope you have very minimal side effects, but If you do at first please stick with it and know that things will get better. 

                                                      Hayden30
                                                      Participant

                                                        I've been on that combo for about a month and a half. The first week was so bad with gi side effects and nausea, but slowly they started getting better and now I have no side effects at all. I feel great and the combo is working. I hope you have very minimal side effects, but If you do at first please stick with it and know that things will get better. 

                                                        mrsriddle
                                                        Participant

                                                          My husband also has BRAF stage IV melanoma and has been on the combo for a few months. No side effects to report except a slight low grade fever the first week.  We are seeing some wonderful results.  He had pneumonia last month and developed blood clots in both lungs.  That is a reported event with the combo.  We weren't sure if it was the combo or the pneumonia or a combination of both. He is on Xarelto now.  He feels normal besides some fatigue from time to time.  My concern is this combo seems more like a patch, I know its effects are only temporary and I worry about when and what the next steps are.  He has been working all the way through with no issues.  Just so much uncertainty.  Good luck and prayers for all!

                                                          mrsriddle
                                                          Participant

                                                            My husband also has BRAF stage IV melanoma and has been on the combo for a few months. No side effects to report except a slight low grade fever the first week.  We are seeing some wonderful results.  He had pneumonia last month and developed blood clots in both lungs.  That is a reported event with the combo.  We weren't sure if it was the combo or the pneumonia or a combination of both. He is on Xarelto now.  He feels normal besides some fatigue from time to time.  My concern is this combo seems more like a patch, I know its effects are only temporary and I worry about when and what the next steps are.  He has been working all the way through with no issues.  Just so much uncertainty.  Good luck and prayers for all!

                                                            mrsriddle
                                                            Participant

                                                              My husband also has BRAF stage IV melanoma and has been on the combo for a few months. No side effects to report except a slight low grade fever the first week.  We are seeing some wonderful results.  He had pneumonia last month and developed blood clots in both lungs.  That is a reported event with the combo.  We weren't sure if it was the combo or the pneumonia or a combination of both. He is on Xarelto now.  He feels normal besides some fatigue from time to time.  My concern is this combo seems more like a patch, I know its effects are only temporary and I worry about when and what the next steps are.  He has been working all the way through with no issues.  Just so much uncertainty.  Good luck and prayers for all!

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