Braf Inhibitors recommended for daughter now with liver tumor
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Braf Inhibitors recommended for daughter now with liver tumor

› Forums › General Melanoma Community › Braf Inhibitors recommended for daughter now with liver tumor

  • Post
    • October 13, 2015 at 3:10 pm
    Jacqueh27
    Participant

    I posted, but it dissappeared? Anyway, going to try to post again. My daughter has had Four infusions of Yervoy and now 7 infusions of Keytruda. Since the Keytruda, there has been no change in tumor size but there is less activity and all of her levels are normal. They now want to introduce combining a Braf Inhibitor because they say the tumor (size of mango) is still too large to remove. Has anybody had success with this? What is the newest Braf Inhibitor out there? Does it cause hair loss, bad side effects? Thanks for any advice! She just hit her one year mark at State IV.

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  • Replies
      • October 14, 2015 at 5:36 pm
      Patina
      Participant

      Has your daughter considered getting a second or third opinion? Other doctors may recommend alternative treatment options for her or the BRAF/MEK combo? I always tell people you need at least a 2nd opinion and maybe a 3rd. – All melanoma specialists and preferably where there is a lot of clinical trial activity. These doctors are much  much more informed.

      Has your doctor ever recommended that she see a radiation oncologist?  Gamma Knife Radiation (aka SRS) can be used to treat liver mets.  If you see one you need to make sure they are a leading radiation oncologist.  Really the best of the best. – One my Mom went to missed a brain tumor and we were really lucky to have access to another radiation oncologist who is at the top of the field and my Mom's doing great.

      • October 14, 2015 at 5:36 pm
      Patina
      Participant

      Has your daughter considered getting a second or third opinion? Other doctors may recommend alternative treatment options for her or the BRAF/MEK combo? I always tell people you need at least a 2nd opinion and maybe a 3rd. – All melanoma specialists and preferably where there is a lot of clinical trial activity. These doctors are much  much more informed.

      Has your doctor ever recommended that she see a radiation oncologist?  Gamma Knife Radiation (aka SRS) can be used to treat liver mets.  If you see one you need to make sure they are a leading radiation oncologist.  Really the best of the best. – One my Mom went to missed a brain tumor and we were really lucky to have access to another radiation oncologist who is at the top of the field and my Mom's doing great.

      • October 14, 2015 at 5:36 pm
      Patina
      Participant

      Has your daughter considered getting a second or third opinion? Other doctors may recommend alternative treatment options for her or the BRAF/MEK combo? I always tell people you need at least a 2nd opinion and maybe a 3rd. – All melanoma specialists and preferably where there is a lot of clinical trial activity. These doctors are much  much more informed.

      Has your doctor ever recommended that she see a radiation oncologist?  Gamma Knife Radiation (aka SRS) can be used to treat liver mets.  If you see one you need to make sure they are a leading radiation oncologist.  Really the best of the best. – One my Mom went to missed a brain tumor and we were really lucky to have access to another radiation oncologist who is at the top of the field and my Mom's doing great.

      • October 14, 2015 at 10:10 pm
      arthurjedi007
      Participant

      Tafinlar and mekenist is the latest FDA combo. Side affects for me were mainly a twice daily fever of 103. Other than that even the sun sensitivity wasn't that bad. But everyone is different. I had no hair loss with it. Now zelboraf was a different story for me.

      Artie

      • October 14, 2015 at 10:10 pm
      arthurjedi007
      Participant

      Tafinlar and mekenist is the latest FDA combo. Side affects for me were mainly a twice daily fever of 103. Other than that even the sun sensitivity wasn't that bad. But everyone is different. I had no hair loss with it. Now zelboraf was a different story for me.

      Artie

      • October 14, 2015 at 10:10 pm
      arthurjedi007
      Participant

      Tafinlar and mekenist is the latest FDA combo. Side affects for me were mainly a twice daily fever of 103. Other than that even the sun sensitivity wasn't that bad. But everyone is different. I had no hair loss with it. Now zelboraf was a different story for me.

      Artie

      • October 15, 2015 at 11:49 am
      jamieth29
      Participant
      I have been on the braf drugs for just over 2 months with good results. I have had 0 side effects and you dont lose hair from them. I am on dabrafenib and tremanatib. I think there is a newer drug but it has the same efficacy. The braf drugs work very well but the median time to resistance is 10-11 months. I’m not sure of combining them with keytruda. I know a lady on the mif site tried this and ended up in the emergency room so be very cautious of adverse side effects if the doctor is possibly using them together.
      Jamie
      • October 15, 2015 at 11:49 am
      jamieth29
      Participant
      I have been on the braf drugs for just over 2 months with good results. I have had 0 side effects and you dont lose hair from them. I am on dabrafenib and tremanatib. I think there is a newer drug but it has the same efficacy. The braf drugs work very well but the median time to resistance is 10-11 months. I’m not sure of combining them with keytruda. I know a lady on the mif site tried this and ended up in the emergency room so be very cautious of adverse side effects if the doctor is possibly using them together.
      Jamie
        • October 16, 2015 at 6:51 pm
        Jacqueh27
        Participant

        Thank you! I hope you keep responding!

        • October 16, 2015 at 6:51 pm
        Jacqueh27
        Participant

        Thank you! I hope you keep responding!

        • October 16, 2015 at 6:51 pm
        Jacqueh27
        Participant

        Thank you! I hope you keep responding!

      • October 15, 2015 at 11:49 am
      jamieth29
      Participant
      I have been on the braf drugs for just over 2 months with good results. I have had 0 side effects and you dont lose hair from them. I am on dabrafenib and tremanatib. I think there is a newer drug but it has the same efficacy. The braf drugs work very well but the median time to resistance is 10-11 months. I’m not sure of combining them with keytruda. I know a lady on the mif site tried this and ended up in the emergency room so be very cautious of adverse side effects if the doctor is possibly using them together.
      Jamie
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