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Recurrences with brain mets from BRAF/MEK Drugs?

Forums General Melanoma Community Recurrences with brain mets from BRAF/MEK Drugs?

  • This topic has 27 replies, 12 voices, and was last updated 9 years ago by Ali.
  • Post
    killmel
    Participant

      Hi Everyone,

      I visit MPIP , as well as, MIF to gain as much knowledge as I can on Mel. 

      For what it is worth, I have noticed an increase in brain mets recurrences from people that post on the BB. Also, there seems to be a trend from people that have taken BRAF & Mef inhibitor drugs.

      Maybe I am wrong, but if anyone has taken BRAF & MEK, it might be interesting to post whether or not you have a recurrence with brain mets & how long you have taken BRAF orMEK drug.

      Hi Everyone,

      I visit MPIP , as well as, MIF to gain as much knowledge as I can on Mel. 

      For what it is worth, I have noticed an increase in brain mets recurrences from people that post on the BB. Also, there seems to be a trend from people that have taken BRAF & Mef inhibitor drugs.

      Maybe I am wrong, but if anyone has taken BRAF & MEK, it might be interesting to post whether or not you have a recurrence with brain mets & how long you have taken BRAF orMEK drug.

      Just a thought..anyone have a opinion about Recurrences with  brain mets from BRAF/MEK Drugs?

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    • Replies
        Sharon in Reno
        Participant

          I have not had BRAF/MEK drugs (biochemo & IL-2). I did just have a brain met removed 07/01/10. I did test positive for the BRAF mutation wild type V0006 this past Jan. Yesterday my onco Dr. Reddy sugessted I consider going back to SF for BRAF with Dr. Minor or staying here in Reno and doing Ipi which him. I dont have details yet. I will be doing CT scans next week then go from there.

          Yes I do find this very intyerresting and it is now has my full attention.

          Ok friends..so what do you think….Ipi or BRAF?

          love, Sharon in Reno, Stage IV

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            Jim in Denver
            Participant

              Hi Sharon,

              If you have the V600e, you should consider the BRAF Inhibitor first.  Wild Type would not be the V600e – sometime a re-test will show it (if it is present) because of uneven distribution of the gene in the sample, but that is uncommon apparently.  It would be a good choice to have, I think.  I tested negative for the 600e (g and k as well), so I am doing the Ipi/Temador Trial at MD Anderson.  Yesterday, there was national news item about a future trial combining the BRAF Inhibitor with Ipi, which will doubtless happen at some point, but maybe not soon enough for your decision.  You have probably already read/heard about response durability issues with the BRAF Inhibitor(s).  Maybe you should ask your Onc if you can do the Compassionate Use IPI Trial regardless of your response to a BRAF Inhibitor – what do you think?

              xoxoxox

              Jim

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              Jim in Denver
              Participant

                Hi Sharon,

                If you have the V600e, you should consider the BRAF Inhibitor first.  Wild Type would not be the V600e – sometime a re-test will show it (if it is present) because of uneven distribution of the gene in the sample, but that is uncommon apparently.  It would be a good choice to have, I think.  I tested negative for the 600e (g and k as well), so I am doing the Ipi/Temador Trial at MD Anderson.  Yesterday, there was national news item about a future trial combining the BRAF Inhibitor with Ipi, which will doubtless happen at some point, but maybe not soon enough for your decision.  You have probably already read/heard about response durability issues with the BRAF Inhibitor(s).  Maybe you should ask your Onc if you can do the Compassionate Use IPI Trial regardless of your response to a BRAF Inhibitor – what do you think?

                xoxoxox

                Jim

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              Carver
              Participant

                That’s an interesting question but I have to say that from my participation on the MPIP for five years I have seen a number of patients who responded to a variety of treatments recur with brain mets so I think with the newer treatments it would be hard to to tell if that is particularly true of them. I know that several patients who I got to know had some response to IL2 and then recurred to the brain. Of course fortunately many others have had long term remision from that and other treatments.

                I also think that in terms of BRAF and MEF inhibitor drugs it would be necessary to get larger results from trials than are currently available for it to be analyzed with any hope of results of value.

                Something that has come up a lot on the MPIP is that it’s hard to take the population of participants here and draw conclusions. That can be an issue when lower stage patients see a lot of recurrences among lower stage patients that post here. In that case it’s self selecting because most lower stage patients don’t generally have as much of a need to participate on a board like this one, therefore, many people that do stick around do so because they have recurred where those without recurrences are no longer active participants.

                The new trials are a separate issue but I still think it would be hard to see if stage IV patients doing one trial are more likely to have brain mets that those in another treatment without some kind of controlled trial  looing into this issue.

                That’s just my opinion of course and I am a stage III patient who hasn’t done the treatment in question.

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                  JerryfromFauq
                  Participant

                    I read somewhere, Michael FL may remember where) that 40% of Melanoma stage IV patients get brain mets.  I two would love to see a review of trials to see if this percentage changes with BRAF inhibitors as well.

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                    jag
                    Participant

                      Jerrry!!!, Very happy to see you haved jumped right back on the horse.  Welcome Back.

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                      jag
                      Participant

                        Jerrry!!!, Very happy to see you haved jumped right back on the horse.  Welcome Back.

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                        Jim in Denver
                        Participant

                          JERRY!!!!!!!!!!!!!

                          Damn – its GREAT to see you here again!!!!!!!!!

                          Are you still at St. Anthony's?  I would like to come visit you when/if you are feeling up to it, so let me know.  You are an amazing guy who all of us here have been praying for and thinking about!!!!

                          By the way, I am not sure you should get back up on that SAME horse…lol.

                          Best,

                          Jim

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                          lhaley
                          Participant

                            John and Jim

                            The way the posts jump back up when someone responds gets confusing. Notice that Jerry's comment was dated 8/3

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                            jag
                            Participant

                              Damn, was hoping he was back.  

                               

                               

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                              jag
                              Participant

                                Damn, was hoping he was back.  

                                 

                                 

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                                lhaley
                                Participant

                                  John and Jim

                                  The way the posts jump back up when someone responds gets confusing. Notice that Jerry's comment was dated 8/3

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                                  Jim in Denver
                                  Participant

                                    JERRY!!!!!!!!!!!!!

                                    Damn – its GREAT to see you here again!!!!!!!!!

                                    Are you still at St. Anthony's?  I would like to come visit you when/if you are feeling up to it, so let me know.  You are an amazing guy who all of us here have been praying for and thinking about!!!!

                                    By the way, I am not sure you should get back up on that SAME horse…lol.

                                    Best,

                                    Jim

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                                  Jocelyn
                                  Participant

                                    It is too early to understand the relationship between working inhibitors and subsequent brain mets. The trials are too recent. But what little information we have, both from patients here and other sources, suggests that many people who have met with initial success on the Braf, develop brain mets some time later. The obvious reason would be that current inhibitor drugs don’t yet work in this area. What I find particularly disturbing is the possibility that inhibiting the spread of melanoma in one area might inadvertently increase the chances of it spreading to another, in this  case to the brain or CNS generally.  The melanoma wants to spread, so it finds a way. I am sure researchers will find a solution, some version of inhibitor that works in the CNS areas as well as everywhere else.

                                    In the meanwhile, people who are Braf or Mek positive should still see the inhibitors as a good option for them, as it may buy them significant time while the research advances. Every treatment has risks, and any patient on any treatment, not just inhibitors, might eventually see spread to the brain. Brain mets can be treated, and patients can move on to IPI or something else. It’s always a crap shot, but there is always hope.

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                                      Amy Busby
                                      Participant

                                        It is highly possible that a factor is that stage 4 patients taking the inhibitors are living longer, thus giving mel. more time  to get to the brain.  I went from deaths door to clear of disease for 7/8 months.  Then I developed mets to the brain lining.  If I'd croaked 7 months earlier it could have been from other complications, or simply gotten into the brain then as the disease progressed to end stage.If the inhibitors aren't crossing the barrier at all or as well as other areas then maybe the mel. is finding a foothold in the cns.  No way to know at this point.  For what it's worth my inhibitor response is hanging in there on the rest of my body (3 months), and I know my dr. has another patient who is still clear aside from the brain and he's been off the BRAF inhibitor for 6/8 mo. or so.

                                        Amy

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                                        killmel
                                        Participant

                                          Hi Amy,

                                           

                                          Good to hear from you. Did you take GSK Braf of Rouche Braf??? Also, your doctor'sother patient take GSK or Rouche.

                                           

                                          I have am trying to determine if GSK braf or Rouche braf is better than the other manufacture of Braf!!!

                                           

                                          Thanks

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                                          kitchkl
                                          Participant

                                            Amy, This is very encouraging!  My Husband is suffering from a tumor on his neck – both outside and inside.  He is due to go on a BRAF Inhibitor starting in September and we can only hope his progress is as good as your's.  Thanks for writing.

                                            Kathy

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                                            kitchkl
                                            Participant

                                              Amy, This is very encouraging!  My Husband is suffering from a tumor on his neck – both outside and inside.  He is due to go on a BRAF Inhibitor starting in September and we can only hope his progress is as good as your's.  Thanks for writing.

                                              Kathy

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                                            Kevin from Atlanta
                                            Participant

                                              I don't think we have enough information to state either way. I have noticed an increase in brain tumors posted on the board. I think it is because more people are doing Ipi and the baseline scans require a brain MRI. This is how I found my brain mets two months ago.

                                              You can't find brain mets if you are not looking for them.

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                                              Kevin from Atlanta
                                              Participant

                                                I don't think we have enough information to state either way. I have noticed an increase in brain tumors posted on the board. I think it is because more people are doing Ipi and the baseline scans require a brain MRI. This is how I found my brain mets two months ago.

                                                You can't find brain mets if you are not looking for them.

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                                                jag
                                                Participant

                                                  The only difference I can think of is that IPI seems to be able to cross the blood brain barrier, while BRAF does not.  

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                                                    jag
                                                    Participant

                                                      Oh yeah, Ipi has been shown to have a durable long term response.  Definitely my #1 choice

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                                                      Ali
                                                      Participant

                                                        I agree with Jag, if you can take IPI do it first, as the response may be durable.  That is our plan of attack.

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                                                        Ali
                                                        Participant

                                                          I agree with Jag, if you can take IPI do it first, as the response may be durable.  That is our plan of attack.

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                                                          Ali
                                                          Participant

                                                            I agree with Jag, if you can take IPI do it first, as the response may be durable.  That is our plan of attack.

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                                                            jag
                                                            Participant

                                                              Oh yeah, Ipi has been shown to have a durable long term response.  Definitely my #1 choice

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                                                            jag
                                                            Participant

                                                              The only difference I can think of is that IPI seems to be able to cross the blood brain barrier, while BRAF does not.  

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