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Dabrafinib and other random questions

Forums General Melanoma Community Dabrafinib and other random questions

  • Post
    DonnaK
    Participant

      I'm hoping to get some advice about a few issues that have been bothering me lately.  As you may have read in previous posts, my husband has a rapidly progressing melanoma w/ the main problem being innumerable brain mets.  He responded excellently to zelboraf but had a liver toxicity; while waiting for his liver to recover, his brain mets grew and forced him to have WBRT. He also had a single dose of Ipi but lost the ability to walk so we switched to Dabrafinib, since it seemed like he didn't have enough time to wait for Ipi to work.  He is doing okay on dabrafinib, though the improvement doesn't seem to be as impressive as it was with Zelboraf.  So here are my questions:

      1.  John seems to do much better when he is also on decadron, due to brain swelling from the WBRT(?).  However, it is written all over the dabrafinib insert that decadron (dexamethasome) and dabranib interact with eachother.  Johns doc at SK is not the least bit concerned with the interaction. I don't know that there are really alternatives to the decadron, but I just want to make sure it's really okay to take both.  Does anyone have any insight from their own experience or doctors opinions?

      2.  I've started to question the oncologist for next steps.  Given John's extensive disease, I'm nervous that this is our last chance to have real success.  I would like to consider combining dabrifinib with either ipi or the MEK inhibitor, but  hte doctor is dead set against both.  I understand her hesitation with ipi, but am confused by her reluctance to try dabraf+Mekinist.  She has said that the only other patients at SK on the combo have had severe toxicities.  Is that consistent with what everyoen else is saying? My understanding was that the combo actually lessened toxicities…

      Thanks in advance! I'm trying to not overthink everything (as I'm known to do), but want to make sure that John is getting the best possible care. I felt that traveling to Sloan Kettering gave us the best shot, but now I'm having second thoughts… 

    Viewing 11 reply threads
    • Replies
        POW
        Participant

          According to the little bit that I have read, dabrafenib stimulates an enzyme that can break down dexamethazone and other steroids (contraceptives, for example). Therefore, the problem with taking dabrafenib and decadron together is that the dabrafenib interferes with the decadron, not the other way around. My brother took Zelboraf (very similar to dabrafenib) and dexamethazone together with no problem. Perhaps he had to use a higher dose of dex than other patients, I don't know, but he had no problem with the combination. And the dex really did help with his neurological problems. 

          As for combining dabrafenib + MEK, all the studies I have read say that the combination works better than either drug alone and the combo has fewer side effects that either drug alone. That is why the combo is currently being "fast tracked" by the FDA.

          The combination of  Ipi + zelboraf resulted in severe liver toxicities, which is why those clinical trials were terminated early. But not the combination of dabrafenib + MEK. Perhaps you misunderstood your oncologist or she was answering a different quesiton than you asked. I would call her and clarify that part of your conversation. If she insists that the BRAF + MEK combo is unacceptably toxic, I would get a second opinion from an oncologist experienced with both drugs. That is what I always do when a doctor tells me something that doesn't make sense to me. Perhaps there is something unique about your husband's case and your current oncologist is correct. But I would feel better getting a second opinon.

          POW
          Participant

            According to the little bit that I have read, dabrafenib stimulates an enzyme that can break down dexamethazone and other steroids (contraceptives, for example). Therefore, the problem with taking dabrafenib and decadron together is that the dabrafenib interferes with the decadron, not the other way around. My brother took Zelboraf (very similar to dabrafenib) and dexamethazone together with no problem. Perhaps he had to use a higher dose of dex than other patients, I don't know, but he had no problem with the combination. And the dex really did help with his neurological problems. 

            As for combining dabrafenib + MEK, all the studies I have read say that the combination works better than either drug alone and the combo has fewer side effects that either drug alone. That is why the combo is currently being "fast tracked" by the FDA.

            The combination of  Ipi + zelboraf resulted in severe liver toxicities, which is why those clinical trials were terminated early. But not the combination of dabrafenib + MEK. Perhaps you misunderstood your oncologist or she was answering a different quesiton than you asked. I would call her and clarify that part of your conversation. If she insists that the BRAF + MEK combo is unacceptably toxic, I would get a second opinion from an oncologist experienced with both drugs. That is what I always do when a doctor tells me something that doesn't make sense to me. Perhaps there is something unique about your husband's case and your current oncologist is correct. But I would feel better getting a second opinon.

            POW
            Participant

              According to the little bit that I have read, dabrafenib stimulates an enzyme that can break down dexamethazone and other steroids (contraceptives, for example). Therefore, the problem with taking dabrafenib and decadron together is that the dabrafenib interferes with the decadron, not the other way around. My brother took Zelboraf (very similar to dabrafenib) and dexamethazone together with no problem. Perhaps he had to use a higher dose of dex than other patients, I don't know, but he had no problem with the combination. And the dex really did help with his neurological problems. 

              As for combining dabrafenib + MEK, all the studies I have read say that the combination works better than either drug alone and the combo has fewer side effects that either drug alone. That is why the combo is currently being "fast tracked" by the FDA.

              The combination of  Ipi + zelboraf resulted in severe liver toxicities, which is why those clinical trials were terminated early. But not the combination of dabrafenib + MEK. Perhaps you misunderstood your oncologist or she was answering a different quesiton than you asked. I would call her and clarify that part of your conversation. If she insists that the BRAF + MEK combo is unacceptably toxic, I would get a second opinion from an oncologist experienced with both drugs. That is what I always do when a doctor tells me something that doesn't make sense to me. Perhaps there is something unique about your husband's case and your current oncologist is correct. But I would feel better getting a second opinon.

                NYKaren
                Participant
                  Hi,
                  I have been on Trafilnar for 6 weeks now, and have been on Dex for the entire time. I’m down to 2 mg./day, going for MRI, neuro and onc visits this Monday.
                  I was on Zelbarof for six months, with numerous side effects. Since the Trafilnar, no real side effects except mild heel pain and some diarrhea controlled by immodium. Also some skin tags. No fevers. My onc is at NYU, but I also see docs at Sloan (long story, just had to do with timing of clinical trials, I love both docs and hospitals.). They have all told me that side effects should resolve at about the 2- month mark, and I already notice the skin-tags have stopped popping up.

                  My visible (face, ear, scalp) mets are just about gone, and of course I’ll know more after my MRI on Monday.
                  (Yikes!)

                  I hope this helps,
                  Take care,
                  Karen

                  NYKaren
                  Participant
                    Hi,
                    I have been on Trafilnar for 6 weeks now, and have been on Dex for the entire time. I’m down to 2 mg./day, going for MRI, neuro and onc visits this Monday.
                    I was on Zelbarof for six months, with numerous side effects. Since the Trafilnar, no real side effects except mild heel pain and some diarrhea controlled by immodium. Also some skin tags. No fevers. My onc is at NYU, but I also see docs at Sloan (long story, just had to do with timing of clinical trials, I love both docs and hospitals.). They have all told me that side effects should resolve at about the 2- month mark, and I already notice the skin-tags have stopped popping up.

                    My visible (face, ear, scalp) mets are just about gone, and of course I’ll know more after my MRI on Monday.
                    (Yikes!)

                    I hope this helps,
                    Take care,
                    Karen

                    NYKaren
                    Participant
                      Hi,
                      I have been on Trafilnar for 6 weeks now, and have been on Dex for the entire time. I’m down to 2 mg./day, going for MRI, neuro and onc visits this Monday.
                      I was on Zelbarof for six months, with numerous side effects. Since the Trafilnar, no real side effects except mild heel pain and some diarrhea controlled by immodium. Also some skin tags. No fevers. My onc is at NYU, but I also see docs at Sloan (long story, just had to do with timing of clinical trials, I love both docs and hospitals.). They have all told me that side effects should resolve at about the 2- month mark, and I already notice the skin-tags have stopped popping up.

                      My visible (face, ear, scalp) mets are just about gone, and of course I’ll know more after my MRI on Monday.
                      (Yikes!)

                      I hope this helps,
                      Take care,
                      Karen

                      NYKaren
                      Participant
                        Sorry, forgot to add that I expect to stop the Dex altogether this week.
                        NYKaren
                        Participant
                          Sorry, forgot to add that I expect to stop the Dex altogether this week.
                          NYKaren
                          Participant
                            Sorry, forgot to add that I expect to stop the Dex altogether this week.
                            NYKaren
                            Participant
                              Sorry, forgot to add that I expect to stop the Dex altogether this week.
                              NYKaren
                              Participant
                                Sorry, forgot to add that I expect to stop the Dex altogether this week.
                                NYKaren
                                Participant
                                  Sorry, forgot to add that I expect to stop the Dex altogether this week.
                                Mat
                                Participant

                                  Agree with POW's response.  I'm on the combo (7 weeks) and no issues.  Is it possible that SK does not want to prescribe the combo because the "combo" is not yet FDA approved?

                                    NYKaren
                                    Participant
                                      Mat, I still don’t get why a drug that is not approved comes to my mail-order house every month. It’s the strangest thing–do you think someone forgot to read the memo??
                                      Karen
                                      NYKaren
                                      Participant
                                        Mat, I still don’t get why a drug that is not approved comes to my mail-order house every month. It’s the strangest thing–do you think someone forgot to read the memo??
                                        Karen
                                        NYKaren
                                        Participant
                                          Mat, I still don’t get why a drug that is not approved comes to my mail-order house every month. It’s the strangest thing–do you think someone forgot to read the memo??
                                          Karen
                                        Mat
                                        Participant

                                          Agree with POW's response.  I'm on the combo (7 weeks) and no issues.  Is it possible that SK does not want to prescribe the combo because the "combo" is not yet FDA approved?

                                          Mat
                                          Participant

                                            Agree with POW's response.  I'm on the combo (7 weeks) and no issues.  Is it possible that SK does not want to prescribe the combo because the "combo" is not yet FDA approved?

                                            GAngel
                                            Participant

                                              Hi Donna,

                                              I, too, agree with POW's response. My husband has been on the Dabrafenib/MEK combo for 8 weeks now and has had no issues with toxicity. In fact, his oncologist gave me a printout (30+ pages) of the abstract from The New England Journal of Medicine entitled, "Combined BRAF and MEK inhibition in Melanoma with BRAF V600 Mutations" which contains all the data from the phase 1 and 2 trials of the combined treatment with Dabrafenib and Trametinib (AKA Mekinist) which concludes that the two are safely combined at full monotherapy doses and progression-free survival was significantly improved.  Dose-limiting toxic effects were infrequently observed in patients receiving the combo and even then the effects were grades 1 and 2.  

                                              As such, it would be very unlikely that several patients being treated at the same center would have severe toxic effects as the data I have from the studies just doesn't support that claim. I would definitely get clarification on this issue from his oncologist.

                                              Blessings and love to you and your husband!

                                              Gina 

                                              GAngel
                                              Participant

                                                Hi Donna,

                                                I, too, agree with POW's response. My husband has been on the Dabrafenib/MEK combo for 8 weeks now and has had no issues with toxicity. In fact, his oncologist gave me a printout (30+ pages) of the abstract from The New England Journal of Medicine entitled, "Combined BRAF and MEK inhibition in Melanoma with BRAF V600 Mutations" which contains all the data from the phase 1 and 2 trials of the combined treatment with Dabrafenib and Trametinib (AKA Mekinist) which concludes that the two are safely combined at full monotherapy doses and progression-free survival was significantly improved.  Dose-limiting toxic effects were infrequently observed in patients receiving the combo and even then the effects were grades 1 and 2.  

                                                As such, it would be very unlikely that several patients being treated at the same center would have severe toxic effects as the data I have from the studies just doesn't support that claim. I would definitely get clarification on this issue from his oncologist.

                                                Blessings and love to you and your husband!

                                                Gina 

                                                GAngel
                                                Participant

                                                  Hi Donna,

                                                  I, too, agree with POW's response. My husband has been on the Dabrafenib/MEK combo for 8 weeks now and has had no issues with toxicity. In fact, his oncologist gave me a printout (30+ pages) of the abstract from The New England Journal of Medicine entitled, "Combined BRAF and MEK inhibition in Melanoma with BRAF V600 Mutations" which contains all the data from the phase 1 and 2 trials of the combined treatment with Dabrafenib and Trametinib (AKA Mekinist) which concludes that the two are safely combined at full monotherapy doses and progression-free survival was significantly improved.  Dose-limiting toxic effects were infrequently observed in patients receiving the combo and even then the effects were grades 1 and 2.  

                                                  As such, it would be very unlikely that several patients being treated at the same center would have severe toxic effects as the data I have from the studies just doesn't support that claim. I would definitely get clarification on this issue from his oncologist.

                                                  Blessings and love to you and your husband!

                                                  Gina 

                                                  DeniseK
                                                  Participant

                                                    Dear Donna,

                                                    Are you seeing a Melanoma specialist?  I was taking Zelboraf for 6 months but it stopped working.  My specialist kept me on 1/2 dose while I did Ipi.  I had no liver toxicity but it is a combo that can cause it.  I took reishi mushrooms to help protect my liver but I don't know if that's why I didn't get it.  I too was getting burdened with tumor load and things were not looking good for me.  I completed the 4 ipi infusions and went to my doctor.  I could barely talk, eat, drink, or swallow due to tumors invading my larnyx.  He presribed MEK to be added to my Dabrafenib.  It was only 1 week and things started to turn around.  The tumor on my arm had reduced in half!!  As of today that tumor is 1/4 the size it was and I am having no problems with my speech or eating.  MEK has basically saved my life.  I know it only lasts for awhile but even if it's a year ANTI PD1 may be approved by then.  I am having some side effects like blurred vision and diareaha but it's tolerable.  Dabrafenib will break the brain barrier I am told.  I am due for an MRI in a week 1/2 so we shall wait and see what's going on up there but I feel great, compared to what I was feeling just 2 weeks ago.  

                                                    All my best to you and your husband.

                                                    Denise

                                                      NYKaren
                                                      Participant
                                                        Hi again, Donna,
                                                        I just read your post again… you did say Sloan Kettering, right? I spoke with Dr. Wolchok’ and his PA Ally, and they’re thrilled with my results on Tranlifar. Maybe you need some clarification from your onc. there? Right now I see Dr. Anna Pavlick at NYU, and she’s just delighted with my results (and I’m delighted with her and her team too.)
                                                        Take care,
                                                        Karen
                                                        NYKaren
                                                        Participant
                                                          Hi again, Donna,
                                                          I just read your post again… you did say Sloan Kettering, right? I spoke with Dr. Wolchok’ and his PA Ally, and they’re thrilled with my results on Tranlifar. Maybe you need some clarification from your onc. there? Right now I see Dr. Anna Pavlick at NYU, and she’s just delighted with my results (and I’m delighted with her and her team too.)
                                                          Take care,
                                                          Karen
                                                          NYKaren
                                                          Participant
                                                            Hi again, Donna,
                                                            I just read your post again… you did say Sloan Kettering, right? I spoke with Dr. Wolchok’ and his PA Ally, and they’re thrilled with my results on Tranlifar. Maybe you need some clarification from your onc. there? Right now I see Dr. Anna Pavlick at NYU, and she’s just delighted with my results (and I’m delighted with her and her team too.)
                                                            Take care,
                                                            Karen
                                                          DeniseK
                                                          Participant

                                                            Dear Donna,

                                                            Are you seeing a Melanoma specialist?  I was taking Zelboraf for 6 months but it stopped working.  My specialist kept me on 1/2 dose while I did Ipi.  I had no liver toxicity but it is a combo that can cause it.  I took reishi mushrooms to help protect my liver but I don't know if that's why I didn't get it.  I too was getting burdened with tumor load and things were not looking good for me.  I completed the 4 ipi infusions and went to my doctor.  I could barely talk, eat, drink, or swallow due to tumors invading my larnyx.  He presribed MEK to be added to my Dabrafenib.  It was only 1 week and things started to turn around.  The tumor on my arm had reduced in half!!  As of today that tumor is 1/4 the size it was and I am having no problems with my speech or eating.  MEK has basically saved my life.  I know it only lasts for awhile but even if it's a year ANTI PD1 may be approved by then.  I am having some side effects like blurred vision and diareaha but it's tolerable.  Dabrafenib will break the brain barrier I am told.  I am due for an MRI in a week 1/2 so we shall wait and see what's going on up there but I feel great, compared to what I was feeling just 2 weeks ago.  

                                                            All my best to you and your husband.

                                                            Denise

                                                            DeniseK
                                                            Participant

                                                              Dear Donna,

                                                              Are you seeing a Melanoma specialist?  I was taking Zelboraf for 6 months but it stopped working.  My specialist kept me on 1/2 dose while I did Ipi.  I had no liver toxicity but it is a combo that can cause it.  I took reishi mushrooms to help protect my liver but I don't know if that's why I didn't get it.  I too was getting burdened with tumor load and things were not looking good for me.  I completed the 4 ipi infusions and went to my doctor.  I could barely talk, eat, drink, or swallow due to tumors invading my larnyx.  He presribed MEK to be added to my Dabrafenib.  It was only 1 week and things started to turn around.  The tumor on my arm had reduced in half!!  As of today that tumor is 1/4 the size it was and I am having no problems with my speech or eating.  MEK has basically saved my life.  I know it only lasts for awhile but even if it's a year ANTI PD1 may be approved by then.  I am having some side effects like blurred vision and diareaha but it's tolerable.  Dabrafenib will break the brain barrier I am told.  I am due for an MRI in a week 1/2 so we shall wait and see what's going on up there but I feel great, compared to what I was feeling just 2 weeks ago.  

                                                              All my best to you and your husband.

                                                              Denise

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