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Dabrafenib and Trametinib Combo, how long for side effects

Forums General Melanoma Community Dabrafenib and Trametinib Combo, how long for side effects

  • Post
    homemadehitshow
    Participant

      Hi all, posting on behalf of my wife.

      My wife was diagnosed barely in stage 3.  1.01mm on her leg, 6 cells found during biopsy.  She was not a good canidate for Interferon so we investigated and eventually ended up with the Dabrafenib and Trametinib on prescription.

      She has been taking them for about 11 days.  She's had a few side effects, a rash, sickness but nothing extreme.

      I am wondering if this is the worst it gets or is there a peak period for side effects or perhaps they just show up at any time.  Keep in mind this is all for a seemingly healthy person.

      Thanks.

    Viewing 8 reply threads
    • Replies
        ecc26
        Participant

          semantics, but did you mean 6 nodes were positive during biopsy, or truly they only found 6 cancer cells in her mole? 6 nodes fits more with a stage III. 

          Anyway… I'm a stage IV and I've been on this combo for about a month. I have had no noticable side effects since starting the medications. I have read other's reports that whatever side effects show up tend to ease up after about a month, but most of the posts I've read even if they have side effects, they're pretty mild and very manageable. 

          Make sure she tells her doctor about any side effects she has- they can help ease the symptoms or decide if it's something that warrents a closer look. 

          Just curious- is this part of a clinical trial, or just through your local onc/melanoma specialist? I didn't think these were approved for stage III out side of clinical trials.

          -Eva

          ecc26
          Participant

            semantics, but did you mean 6 nodes were positive during biopsy, or truly they only found 6 cancer cells in her mole? 6 nodes fits more with a stage III. 

            Anyway… I'm a stage IV and I've been on this combo for about a month. I have had no noticable side effects since starting the medications. I have read other's reports that whatever side effects show up tend to ease up after about a month, but most of the posts I've read even if they have side effects, they're pretty mild and very manageable. 

            Make sure she tells her doctor about any side effects she has- they can help ease the symptoms or decide if it's something that warrents a closer look. 

            Just curious- is this part of a clinical trial, or just through your local onc/melanoma specialist? I didn't think these were approved for stage III out side of clinical trials.

            -Eva

              Mat
              Participant

                My experience is similar to Eva's–minor side effects.  I also question whether it is a good idea for a Stage III patient to use these drugs–perhaps the doctor is only proposing very short term usage?  Speaking in a non-scientific/medical way, it is generally believed that you only have so much capacity for targeted therapy–questionable whether wise to use part of that capacity at Stage III.  Of course, I'm not a doctor.

                ecc26
                Participant

                  Exactly my reason for questioning why she's on these meds- I think there are some trials out there using them for stage III unresectable. 

                  POW
                  Participant

                    I agree with Mat and Eva. I would be very reluctant to take any BRAF inhibitor too early in the game– especially not if I was only Stage III.

                    When these drugs work (and they only work in about 50% of the people who take them) they work quickly but the melanoma usually becomes resistant after 6-9 months. Then what are you going to do? Even worse, in many cases, when the melanoma becomes resistant to the BRAF inhibitor it seems to become more aggressive than it was before and it starts to spread very quickly. Bad news!

                    It does not seem like a good idea to me to be reaching for the BRAF inhibitor whle the patient is healthy and the tumor burden is low.

                    POW
                    Participant

                      I agree with Mat and Eva. I would be very reluctant to take any BRAF inhibitor too early in the game– especially not if I was only Stage III.

                      When these drugs work (and they only work in about 50% of the people who take them) they work quickly but the melanoma usually becomes resistant after 6-9 months. Then what are you going to do? Even worse, in many cases, when the melanoma becomes resistant to the BRAF inhibitor it seems to become more aggressive than it was before and it starts to spread very quickly. Bad news!

                      It does not seem like a good idea to me to be reaching for the BRAF inhibitor whle the patient is healthy and the tumor burden is low.

                      homemadehitshow
                      Participant

                        You guys are not doctors πŸ™‚

                         

                        There is a clinical trial at UCSF for the combo on stage 3.  Her case was refered nationwide since it was so low on the stage 3 side and was recommended to go on this trial.  The doctors were very interested in her being on the treatment since she was so low in the counts.

                         

                        UCSF is about 100 miles from us and it was a 50/50 placebo trial so what happened was our local doctor was able to get them on prescription.

                        The theory in place is (a) she could possibly have done no treatment and been OK (b) there was no alternative practical (c) the trial suggests these can remove/cure all cells if the counts are low.  Additionally the theory is that breakthroughs are coming and the worst case scenario is to hold out a year or two until they arrive.

                        In the end none of us know what will happen, doing nothing was not acceptable for her and Interferon was out so not sure what other path to take.

                        homemadehitshow
                        Participant

                          You guys are not doctors πŸ™‚

                           

                          There is a clinical trial at UCSF for the combo on stage 3.  Her case was refered nationwide since it was so low on the stage 3 side and was recommended to go on this trial.  The doctors were very interested in her being on the treatment since she was so low in the counts.

                           

                          UCSF is about 100 miles from us and it was a 50/50 placebo trial so what happened was our local doctor was able to get them on prescription.

                          The theory in place is (a) she could possibly have done no treatment and been OK (b) there was no alternative practical (c) the trial suggests these can remove/cure all cells if the counts are low.  Additionally the theory is that breakthroughs are coming and the worst case scenario is to hold out a year or two until they arrive.

                          In the end none of us know what will happen, doing nothing was not acceptable for her and Interferon was out so not sure what other path to take.

                          homemadehitshow
                          Participant

                            You guys are not doctors πŸ™‚

                             

                            There is a clinical trial at UCSF for the combo on stage 3.  Her case was refered nationwide since it was so low on the stage 3 side and was recommended to go on this trial.  The doctors were very interested in her being on the treatment since she was so low in the counts.

                             

                            UCSF is about 100 miles from us and it was a 50/50 placebo trial so what happened was our local doctor was able to get them on prescription.

                            The theory in place is (a) she could possibly have done no treatment and been OK (b) there was no alternative practical (c) the trial suggests these can remove/cure all cells if the counts are low.  Additionally the theory is that breakthroughs are coming and the worst case scenario is to hold out a year or two until they arrive.

                            In the end none of us know what will happen, doing nothing was not acceptable for her and Interferon was out so not sure what other path to take.

                            Mat
                            Participant

                              Correct, we're mostly just Stage IV patients or caregivers attempting to stay abreast of the latest developments and thinking.  One additional suggestion–consider consulting with one of the investigators for these drugs (e.g., Keith Flaherty at Mass General) regarding how quickly (or not) to stop the treatment, pulsating the treatment, etc.  Good luck.

                              Mat
                              Participant

                                Correct, we're mostly just Stage IV patients or caregivers attempting to stay abreast of the latest developments and thinking.  One additional suggestion–consider consulting with one of the investigators for these drugs (e.g., Keith Flaherty at Mass General) regarding how quickly (or not) to stop the treatment, pulsating the treatment, etc.  Good luck.

                                Mat
                                Participant

                                  Correct, we're mostly just Stage IV patients or caregivers attempting to stay abreast of the latest developments and thinking.  One additional suggestion–consider consulting with one of the investigators for these drugs (e.g., Keith Flaherty at Mass General) regarding how quickly (or not) to stop the treatment, pulsating the treatment, etc.  Good luck.

                                  ecc26
                                  Participant

                                    Actually, I am a doctor. Not an oncologist or a Melanoma specialist, but still a doctor. I knew there were trials with these drugs for stage III, and it sounds like that's what you're doing? It's a little confusing- you at least looked into trials, but it sounds like you didn't actually join the trial but instead got a script from your local onc? Do I have that right? Just trying to understand your situation.

                                    Of course all medical decisions are to be made between you, your wife, and your doctors. The posters on this forum, myself included, are simply trying to understand your case and your decision process. This second post helps quite a bit. I (and others on this forum) was/were not aware that you could get the combo for stage III without being enrolled in a trial, but it seems that you were. I also had never heard or read the theory that it can kill/remove remaining cells for stage III NED, but most of my research into the drug has been for stage IV where that is not the case.

                                    In my first post part of my question was, how do you know if it's working if there aren't any measurable tumors? What kind of monitoring will you be doing? You've already said that doctors are "very interested in her being on the treatment". So are we, that's all anyone on here meant, or at least that's what I meant. We're all learning all the time. Sometimes something comes along we're not familiar with or someone chooses and gets an unusual course of treatment, as you have. We all just want to learn about the therapy, the decision process, and how it works out.

                                    You're always going to get opinions and experiences from posters, but we all recognise it's your decision how to proceed. Many of us are stage IV and the recommendation is to use these drugs as a last resort and use other available treatments first because these drugs have a finite lifespan of efficacy as others have posted, so this kind of use is unfamiliar. 

                                    Please don't take these opinions personally, including mine- I do not mean too imply that you're wrong or should be doing something else, simply trying to learn and understand.

                                    I very much hope that these drugs do what you want them to do. I also began as a III, although it sounds like I was a more severe III than your wife. There was only interferon for options and no trials. I did interferon, and progressed to stage IV just 4 months after completing interferon. I've been fighting like there's no tomorrow since, because for me there really may not be a tomorrow. 

                                    Best of Luck

                                    ecc26
                                    Participant

                                      Actually, I am a doctor. Not an oncologist or a Melanoma specialist, but still a doctor. I knew there were trials with these drugs for stage III, and it sounds like that's what you're doing? It's a little confusing- you at least looked into trials, but it sounds like you didn't actually join the trial but instead got a script from your local onc? Do I have that right? Just trying to understand your situation.

                                      Of course all medical decisions are to be made between you, your wife, and your doctors. The posters on this forum, myself included, are simply trying to understand your case and your decision process. This second post helps quite a bit. I (and others on this forum) was/were not aware that you could get the combo for stage III without being enrolled in a trial, but it seems that you were. I also had never heard or read the theory that it can kill/remove remaining cells for stage III NED, but most of my research into the drug has been for stage IV where that is not the case.

                                      In my first post part of my question was, how do you know if it's working if there aren't any measurable tumors? What kind of monitoring will you be doing? You've already said that doctors are "very interested in her being on the treatment". So are we, that's all anyone on here meant, or at least that's what I meant. We're all learning all the time. Sometimes something comes along we're not familiar with or someone chooses and gets an unusual course of treatment, as you have. We all just want to learn about the therapy, the decision process, and how it works out.

                                      You're always going to get opinions and experiences from posters, but we all recognise it's your decision how to proceed. Many of us are stage IV and the recommendation is to use these drugs as a last resort and use other available treatments first because these drugs have a finite lifespan of efficacy as others have posted, so this kind of use is unfamiliar. 

                                      Please don't take these opinions personally, including mine- I do not mean too imply that you're wrong or should be doing something else, simply trying to learn and understand.

                                      I very much hope that these drugs do what you want them to do. I also began as a III, although it sounds like I was a more severe III than your wife. There was only interferon for options and no trials. I did interferon, and progressed to stage IV just 4 months after completing interferon. I've been fighting like there's no tomorrow since, because for me there really may not be a tomorrow. 

                                      Best of Luck

                                      ecc26
                                      Participant

                                        Actually, I am a doctor. Not an oncologist or a Melanoma specialist, but still a doctor. I knew there were trials with these drugs for stage III, and it sounds like that's what you're doing? It's a little confusing- you at least looked into trials, but it sounds like you didn't actually join the trial but instead got a script from your local onc? Do I have that right? Just trying to understand your situation.

                                        Of course all medical decisions are to be made between you, your wife, and your doctors. The posters on this forum, myself included, are simply trying to understand your case and your decision process. This second post helps quite a bit. I (and others on this forum) was/were not aware that you could get the combo for stage III without being enrolled in a trial, but it seems that you were. I also had never heard or read the theory that it can kill/remove remaining cells for stage III NED, but most of my research into the drug has been for stage IV where that is not the case.

                                        In my first post part of my question was, how do you know if it's working if there aren't any measurable tumors? What kind of monitoring will you be doing? You've already said that doctors are "very interested in her being on the treatment". So are we, that's all anyone on here meant, or at least that's what I meant. We're all learning all the time. Sometimes something comes along we're not familiar with or someone chooses and gets an unusual course of treatment, as you have. We all just want to learn about the therapy, the decision process, and how it works out.

                                        You're always going to get opinions and experiences from posters, but we all recognise it's your decision how to proceed. Many of us are stage IV and the recommendation is to use these drugs as a last resort and use other available treatments first because these drugs have a finite lifespan of efficacy as others have posted, so this kind of use is unfamiliar. 

                                        Please don't take these opinions personally, including mine- I do not mean too imply that you're wrong or should be doing something else, simply trying to learn and understand.

                                        I very much hope that these drugs do what you want them to do. I also began as a III, although it sounds like I was a more severe III than your wife. There was only interferon for options and no trials. I did interferon, and progressed to stage IV just 4 months after completing interferon. I've been fighting like there's no tomorrow since, because for me there really may not be a tomorrow. 

                                        Best of Luck

                                        homemadehitshow
                                        Participant

                                          You have it right.  The trial would have been very inconvenient and only 50/50 so our doctor got the same drugs on prescription.  

                                          Under any form of treatment we would not have known if it worked unless the outcome was negative. 

                                          Here is the Docs explanation

                                           

                                          "The concept here is that her melanoma will never be weaker than it is now. When patients are given these drugs after the disease has already metastasized, it is less effective and does wear off quickly. However, in xxxxxxx'x case, because there are orders of magnitude fewer tumor cells circulating, we are hoping that the burst of tumor cell death we get as a result of the therapy is enough to eradicate the disease completely. In essence, we are trying to exploit a very exciting molecular treatment to cure her forever as opposed to giving her 6 months after the disease has spread. I would much rather employ the drugs now while treating her with curative intent."

                                          Kim K
                                          Participant

                                            Hi there, I too am a doctor, not an oncologist (but have treated cancers in the past), or a melanoma specialist (treated those as well), but a veterinarian.  Our medical / scientific training helps us to ask the critical questions and makes it easeier to wade through the medicalease speak.

                                            I am stage IV NED for over 3 years.

                                            I was also qestioning the thoughts behind using these wonder drug blockers so early in disease, but it is a very logical argument and one that is used for IL-2 which is what made me NED.

                                            I was worried about using my "Ace in the hole" upfront and not having anything else when it didn't work.  That is the thinking that most of us are coming from.  Your doctors reasoning thus seemed different from what most of us were thinking.  I am glad because the theory makes PERFECT sense.

                                            By eliminating the few lurker cells aka tumor burden (even if invisible), it means there are less cells with possible mutations to be resistant to the drugs, hopefully leading to a "cure" or better response / remission.

                                            If there are only a handful of cells left to kill, perhaps there are much fewer mutations allowing mel to persist and proliferate leading to drug failure.  Mels rapid mutation rate is what gets most of us in the end, outwitting us faster than we can find the drugs to knock it back.

                                            Thank you for this insight, I wish I had thought of it myself! *wink*.  You have your ducks in a row and a great team.  Wishing you and your wife the best.

                                            BTW – the only reason why clinical trials mandate most participants have measurable disease is to have something to measure if there is a response or not.  Being NED is difficult for the researchers to show a drugs effectiveness or not since there is nothing to see.  It's one of the drawbacks of the scientific method, yet good for the patients.  This is a point that most patients may forget and another reason to not get treated as early as in your situation.  It is great your doc was willing to get the drugs Rx'd.  

                                            We were considering doing the same thing, deciding on Braf or doing IL-2.  In the end I did IL-2 because if it worked, I could have a durable remission.  I did have to keep my one remaining met to follow my response to see if it worked which scared me.  If Inf is not possible for your wife, I KNOW IL-2 is a definate NO.  Hope this works out, she is a cutting edge patient :).

                                            Kim K
                                            Participant

                                              Hi there, I too am a doctor, not an oncologist (but have treated cancers in the past), or a melanoma specialist (treated those as well), but a veterinarian.  Our medical / scientific training helps us to ask the critical questions and makes it easeier to wade through the medicalease speak.

                                              I am stage IV NED for over 3 years.

                                              I was also qestioning the thoughts behind using these wonder drug blockers so early in disease, but it is a very logical argument and one that is used for IL-2 which is what made me NED.

                                              I was worried about using my "Ace in the hole" upfront and not having anything else when it didn't work.  That is the thinking that most of us are coming from.  Your doctors reasoning thus seemed different from what most of us were thinking.  I am glad because the theory makes PERFECT sense.

                                              By eliminating the few lurker cells aka tumor burden (even if invisible), it means there are less cells with possible mutations to be resistant to the drugs, hopefully leading to a "cure" or better response / remission.

                                              If there are only a handful of cells left to kill, perhaps there are much fewer mutations allowing mel to persist and proliferate leading to drug failure.  Mels rapid mutation rate is what gets most of us in the end, outwitting us faster than we can find the drugs to knock it back.

                                              Thank you for this insight, I wish I had thought of it myself! *wink*.  You have your ducks in a row and a great team.  Wishing you and your wife the best.

                                              BTW – the only reason why clinical trials mandate most participants have measurable disease is to have something to measure if there is a response or not.  Being NED is difficult for the researchers to show a drugs effectiveness or not since there is nothing to see.  It's one of the drawbacks of the scientific method, yet good for the patients.  This is a point that most patients may forget and another reason to not get treated as early as in your situation.  It is great your doc was willing to get the drugs Rx'd.  

                                              We were considering doing the same thing, deciding on Braf or doing IL-2.  In the end I did IL-2 because if it worked, I could have a durable remission.  I did have to keep my one remaining met to follow my response to see if it worked which scared me.  If Inf is not possible for your wife, I KNOW IL-2 is a definate NO.  Hope this works out, she is a cutting edge patient :).

                                              Kim K
                                              Participant

                                                Hi there, I too am a doctor, not an oncologist (but have treated cancers in the past), or a melanoma specialist (treated those as well), but a veterinarian.  Our medical / scientific training helps us to ask the critical questions and makes it easeier to wade through the medicalease speak.

                                                I am stage IV NED for over 3 years.

                                                I was also qestioning the thoughts behind using these wonder drug blockers so early in disease, but it is a very logical argument and one that is used for IL-2 which is what made me NED.

                                                I was worried about using my "Ace in the hole" upfront and not having anything else when it didn't work.  That is the thinking that most of us are coming from.  Your doctors reasoning thus seemed different from what most of us were thinking.  I am glad because the theory makes PERFECT sense.

                                                By eliminating the few lurker cells aka tumor burden (even if invisible), it means there are less cells with possible mutations to be resistant to the drugs, hopefully leading to a "cure" or better response / remission.

                                                If there are only a handful of cells left to kill, perhaps there are much fewer mutations allowing mel to persist and proliferate leading to drug failure.  Mels rapid mutation rate is what gets most of us in the end, outwitting us faster than we can find the drugs to knock it back.

                                                Thank you for this insight, I wish I had thought of it myself! *wink*.  You have your ducks in a row and a great team.  Wishing you and your wife the best.

                                                BTW – the only reason why clinical trials mandate most participants have measurable disease is to have something to measure if there is a response or not.  Being NED is difficult for the researchers to show a drugs effectiveness or not since there is nothing to see.  It's one of the drawbacks of the scientific method, yet good for the patients.  This is a point that most patients may forget and another reason to not get treated as early as in your situation.  It is great your doc was willing to get the drugs Rx'd.  

                                                We were considering doing the same thing, deciding on Braf or doing IL-2.  In the end I did IL-2 because if it worked, I could have a durable remission.  I did have to keep my one remaining met to follow my response to see if it worked which scared me.  If Inf is not possible for your wife, I KNOW IL-2 is a definate NO.  Hope this works out, she is a cutting edge patient :).

                                                ecc26
                                                Participant

                                                  Thank you for clarifying. It is a very interesting approach and I hope it works the way everyone wants it to. How long will she be taking the medications- indefinitely, or for a finite period of time (assuming (and hoping) no new masses appear anywhere)?

                                                  ecc26
                                                  Participant

                                                    Thank you for clarifying. It is a very interesting approach and I hope it works the way everyone wants it to. How long will she be taking the medications- indefinitely, or for a finite period of time (assuming (and hoping) no new masses appear anywhere)?

                                                    ecc26
                                                    Participant

                                                      Thank you for clarifying. It is a very interesting approach and I hope it works the way everyone wants it to. How long will she be taking the medications- indefinitely, or for a finite period of time (assuming (and hoping) no new masses appear anywhere)?

                                                      homemadehitshow
                                                      Participant

                                                        6 Months

                                                        homemadehitshow
                                                        Participant

                                                          6 Months

                                                          homemadehitshow
                                                          Participant

                                                            6 Months

                                                            homemadehitshow
                                                            Participant

                                                              You have it right.  The trial would have been very inconvenient and only 50/50 so our doctor got the same drugs on prescription.  

                                                              Under any form of treatment we would not have known if it worked unless the outcome was negative. 

                                                              Here is the Docs explanation

                                                               

                                                              "The concept here is that her melanoma will never be weaker than it is now. When patients are given these drugs after the disease has already metastasized, it is less effective and does wear off quickly. However, in xxxxxxx'x case, because there are orders of magnitude fewer tumor cells circulating, we are hoping that the burst of tumor cell death we get as a result of the therapy is enough to eradicate the disease completely. In essence, we are trying to exploit a very exciting molecular treatment to cure her forever as opposed to giving her 6 months after the disease has spread. I would much rather employ the drugs now while treating her with curative intent."

                                                              homemadehitshow
                                                              Participant

                                                                You have it right.  The trial would have been very inconvenient and only 50/50 so our doctor got the same drugs on prescription.  

                                                                Under any form of treatment we would not have known if it worked unless the outcome was negative. 

                                                                Here is the Docs explanation

                                                                 

                                                                "The concept here is that her melanoma will never be weaker than it is now. When patients are given these drugs after the disease has already metastasized, it is less effective and does wear off quickly. However, in xxxxxxx'x case, because there are orders of magnitude fewer tumor cells circulating, we are hoping that the burst of tumor cell death we get as a result of the therapy is enough to eradicate the disease completely. In essence, we are trying to exploit a very exciting molecular treatment to cure her forever as opposed to giving her 6 months after the disease has spread. I would much rather employ the drugs now while treating her with curative intent."

                                                                POW
                                                                Participant

                                                                  I agree with Mat and Eva. I would be very reluctant to take any BRAF inhibitor too early in the game– especially not if I was only Stage III.

                                                                  When these drugs work (and they only work in about 50% of the people who take them) they work quickly but the melanoma usually becomes resistant after 6-9 months. Then what are you going to do? Even worse, in many cases, when the melanoma becomes resistant to the BRAF inhibitor it seems to become more aggressive than it was before and it starts to spread very quickly. Bad news!

                                                                  It does not seem like a good idea to me to be reaching for the BRAF inhibitor whle the patient is healthy and the tumor burden is low.

                                                                  ecc26
                                                                  Participant

                                                                    Exactly my reason for questioning why she's on these meds- I think there are some trials out there using them for stage III unresectable. 

                                                                    ecc26
                                                                    Participant

                                                                      Exactly my reason for questioning why she's on these meds- I think there are some trials out there using them for stage III unresectable. 

                                                                      Mat
                                                                      Participant

                                                                        My experience is similar to Eva's–minor side effects.  I also question whether it is a good idea for a Stage III patient to use these drugs–perhaps the doctor is only proposing very short term usage?  Speaking in a non-scientific/medical way, it is generally believed that you only have so much capacity for targeted therapy–questionable whether wise to use part of that capacity at Stage III.  Of course, I'm not a doctor.

                                                                        Mat
                                                                        Participant

                                                                          My experience is similar to Eva's–minor side effects.  I also question whether it is a good idea for a Stage III patient to use these drugs–perhaps the doctor is only proposing very short term usage?  Speaking in a non-scientific/medical way, it is generally believed that you only have so much capacity for targeted therapy–questionable whether wise to use part of that capacity at Stage III.  Of course, I'm not a doctor.

                                                                          homemadehitshow
                                                                          Participant

                                                                            6 cancer cells in the node removed.

                                                                            homemadehitshow
                                                                            Participant

                                                                              6 cancer cells in the node removed.

                                                                              homemadehitshow
                                                                              Participant

                                                                                6 cancer cells in the node removed.

                                                                              ecc26
                                                                              Participant

                                                                                semantics, but did you mean 6 nodes were positive during biopsy, or truly they only found 6 cancer cells in her mole? 6 nodes fits more with a stage III. 

                                                                                Anyway… I'm a stage IV and I've been on this combo for about a month. I have had no noticable side effects since starting the medications. I have read other's reports that whatever side effects show up tend to ease up after about a month, but most of the posts I've read even if they have side effects, they're pretty mild and very manageable. 

                                                                                Make sure she tells her doctor about any side effects she has- they can help ease the symptoms or decide if it's something that warrents a closer look. 

                                                                                Just curious- is this part of a clinical trial, or just through your local onc/melanoma specialist? I didn't think these were approved for stage III out side of clinical trials.

                                                                                -Eva

                                                                                I have been on the combo trial for three years, stage IV, and doing well. Last reaction was EN, about two years ago. This has been a breeze. This was my first and only treatment except radiation to my hip. The big tumors were in my lungs.

                                                                                I have been on the combo trial for three years, stage IV, and doing well. Last reaction was EN, about two years ago. This has been a breeze. This was my first and only treatment except radiation to my hip. The big tumors were in my lungs.

                                                                                I have been on the combo trial for three years, stage IV, and doing well. Last reaction was EN, about two years ago. This has been a breeze. This was my first and only treatment except radiation to my hip. The big tumors were in my lungs.

                                                                                doro
                                                                                Participant

                                                                                  My father has been on the combo for about 7 months. Like your wife, he is stage III and his doctor at UCSF made a similar argument about depleting as many cancer cells as possible at this point in time — give him the best chance to stay cancer free while other drugs (e.g., PD1) are being developed. His main side effect has been fatigue. While not the majority opinion on this board (as noted on this post, some prefer to hold the combo as an "ace" card), it is important to make the decisions that feel right t us, right? πŸ˜‰

                                                                                  I will note that recently my dad developed a fever, althugh it is not clear if that is from the flu bug going around or from the trametinib. His oncologist actually made the point last month that it is not often that more drugs make patients feel better but that seems to be the case for those taking the combo rather than just the BRAF inhibitor. When my dad was on Zel, he had extreme photosensitivity and was pretty uncomfortable.

                                                                                  Best of luck! Keep us posted.

                                                                                  doro
                                                                                  Participant

                                                                                    My father has been on the combo for about 7 months. Like your wife, he is stage III and his doctor at UCSF made a similar argument about depleting as many cancer cells as possible at this point in time — give him the best chance to stay cancer free while other drugs (e.g., PD1) are being developed. His main side effect has been fatigue. While not the majority opinion on this board (as noted on this post, some prefer to hold the combo as an "ace" card), it is important to make the decisions that feel right t us, right? πŸ˜‰

                                                                                    I will note that recently my dad developed a fever, althugh it is not clear if that is from the flu bug going around or from the trametinib. His oncologist actually made the point last month that it is not often that more drugs make patients feel better but that seems to be the case for those taking the combo rather than just the BRAF inhibitor. When my dad was on Zel, he had extreme photosensitivity and was pretty uncomfortable.

                                                                                    Best of luck! Keep us posted.

                                                                                    doro
                                                                                    Participant

                                                                                      My father has been on the combo for about 7 months. Like your wife, he is stage III and his doctor at UCSF made a similar argument about depleting as many cancer cells as possible at this point in time — give him the best chance to stay cancer free while other drugs (e.g., PD1) are being developed. His main side effect has been fatigue. While not the majority opinion on this board (as noted on this post, some prefer to hold the combo as an "ace" card), it is important to make the decisions that feel right t us, right? πŸ˜‰

                                                                                      I will note that recently my dad developed a fever, althugh it is not clear if that is from the flu bug going around or from the trametinib. His oncologist actually made the point last month that it is not often that more drugs make patients feel better but that seems to be the case for those taking the combo rather than just the BRAF inhibitor. When my dad was on Zel, he had extreme photosensitivity and was pretty uncomfortable.

                                                                                      Best of luck! Keep us posted.

                                                                                        Momrn5
                                                                                        Participant

                                                                                          I was offered this trial. I am stage 3A. Micro mets to sentinal node. I turned it down.  

                                                                                          Momrn5
                                                                                          Participant

                                                                                            I was offered this trial. I am stage 3A. Micro mets to sentinal node. I turned it down.  

                                                                                            Momrn5
                                                                                            Participant

                                                                                              I was offered this trial. I am stage 3A. Micro mets to sentinal node. I turned it down.  

                                                                                              homemadehitshow
                                                                                              Participant

                                                                                                What factors made you make that decision ?

                                                                                                Momrn5
                                                                                                Participant

                                                                                                  Initially I was offered a trial with an arm of wait or watch or a completion node dissection…I took the dissection and refused the trial because the literature stated that it may be curative for the 20% of the people who had additional mets.  Also, looking at Starz classifications and the positioning of the cancer cells within my sentinel node, they didn't go into the parachyma, and there was no extracapsulation of the tumor cells, plus there were only 1% surface area of the node had cancer cells in it.  No cells left in area of tumor, no other nodes positive.  They gave me a 75% to 80%  chance that I am cured.  The drugs are not without side effects that can be devastating.  I don't want them unless I need them.  I just got MRI/CT scans.  If they are clear as they should be, I am just going to live my life.  Lots of 3a are doing that from What I have been reading.

                                                                                                  homemadehitshow
                                                                                                  Participant

                                                                                                    Interesting.  That was what I felt the approach should have been for my wife but NO ONE offered the "do nothing" and she didn't wand the full dissection (which was not offered any way).  All her cells were on the outside (not translating properly but you get the idea) and it was possible they could have been dealt with by her immune system.

                                                                                                    SDFun
                                                                                                    Participant

                                                                                                      I have stage III and my onocolgist said teh trailed was conculed and show s it is benefical in stage III

                                                                                                      homemadehitshow
                                                                                                      Participant

                                                                                                        Interesting.  That was what I felt the approach should have been for my wife but NO ONE offered the "do nothing" and she didn't wand the full dissection (which was not offered any way).  All her cells were on the outside (not translating properly but you get the idea) and it was possible they could have been dealt with by her immune system.

                                                                                                        homemadehitshow
                                                                                                        Participant

                                                                                                          Interesting.  That was what I felt the approach should have been for my wife but NO ONE offered the "do nothing" and she didn't wand the full dissection (which was not offered any way).  All her cells were on the outside (not translating properly but you get the idea) and it was possible they could have been dealt with by her immune system.

                                                                                                          Momrn5
                                                                                                          Participant

                                                                                                            Initially I was offered a trial with an arm of wait or watch or a completion node dissection…I took the dissection and refused the trial because the literature stated that it may be curative for the 20% of the people who had additional mets.  Also, looking at Starz classifications and the positioning of the cancer cells within my sentinel node, they didn't go into the parachyma, and there was no extracapsulation of the tumor cells, plus there were only 1% surface area of the node had cancer cells in it.  No cells left in area of tumor, no other nodes positive.  They gave me a 75% to 80%  chance that I am cured.  The drugs are not without side effects that can be devastating.  I don't want them unless I need them.  I just got MRI/CT scans.  If they are clear as they should be, I am just going to live my life.  Lots of 3a are doing that from What I have been reading.

                                                                                                            Momrn5
                                                                                                            Participant

                                                                                                              Initially I was offered a trial with an arm of wait or watch or a completion node dissection…I took the dissection and refused the trial because the literature stated that it may be curative for the 20% of the people who had additional mets.  Also, looking at Starz classifications and the positioning of the cancer cells within my sentinel node, they didn't go into the parachyma, and there was no extracapsulation of the tumor cells, plus there were only 1% surface area of the node had cancer cells in it.  No cells left in area of tumor, no other nodes positive.  They gave me a 75% to 80%  chance that I am cured.  The drugs are not without side effects that can be devastating.  I don't want them unless I need them.  I just got MRI/CT scans.  If they are clear as they should be, I am just going to live my life.  Lots of 3a are doing that from What I have been reading.

                                                                                                              homemadehitshow
                                                                                                              Participant

                                                                                                                What factors made you make that decision ?

                                                                                                                homemadehitshow
                                                                                                                Participant

                                                                                                                  What factors made you make that decision ?

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