New treatment plan
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New treatment plan

› Forums › General Melanoma Community › New treatment plan

  • Post
    • December 1, 2016 at 7:42 pm
    stevecathy
    Participant
    My husband has been fighting since July 2015. So everything has went pretty good , until September 26th . He was feeling quite right , arm and leg felt heavy. Went to primary, was sent right to hospital, found brain metastases. Fast forward, he has radiation and started keytruda. Completed 2 keytruda, the third will be today. But he had a fell last Friday, feel to his knees and could not walk . So here we are back at hospital still not walking good so not ready to release. Dr wants to add vemurafenib and cobimetinib with keytruda. He has been on mekinist and taflinar prior before brain mets. Wondering everyone’s thoughts on keytruda with vemurafenib and cobimetinib? Anyone done this combo and luck with brain mets? I would appreciate any words on this. I truly am at a loss . Thank you

Viewing 11 reply threads
  • Replies
      • December 2, 2016 at 12:55 am
      Mat
      Participant

      The radiation (gamma knife?) should resolve the brain mets.  Braf Mek can also act on brain mets.

      • December 2, 2016 at 12:55 am
      Mat
      Participant

      The radiation (gamma knife?) should resolve the brain mets.  Braf Mek can also act on brain mets.

      • December 2, 2016 at 12:55 am
      Mat
      Participant

      The radiation (gamma knife?) should resolve the brain mets.  Braf Mek can also act on brain mets.

      • December 2, 2016 at 1:16 am
      cancersnewnormal
      Participant

      Hi Cathy… sorry you and your husband are having to endure this scare! Am I correct in assuming the "radiation" you referred to was to treat his brain metastasis? Has he had a follow up brain MRI since falling down? There are so many possible reasons that he may experience instability and difficulty with walking. It could be the brain mets are swelling or bleeding in response to radiation or Keytruda. I am an atypical BRAF mutation, so those drugs do nothing to help me. I did, for a short period, have good response to MEK, but have no experience with vemurafenib or cobimetinib. I was on Keytruda for 20 months (29 rounds), and the brain mets that were cropping up at a rate of 2-4 per month stopped showing up after the second infusion! Was he still on MEK and Taf when all of this hit, or was that a previous treatment that he had completed? I hope you are able to get answers from his doctors very quickly.

        • December 2, 2016 at 1:45 am
        stevecathy
        Participant
        He has had scan since fall , there is a bleed again so doing 6mg dexamethasone 4 times day. He is little better but wobbly and can not walk far. He was on mek/take until brain mets in Sept. He now has had 3 keytruda infusion , the 3rd was Tues this week. The vemurafenib and cobimetinib will arrive tomorrow. Just seems slow to bounce back , getting worried . Doctor says mets are stable in growth just to allow keytruda to have response. Hopefully adding vemurafenib and cobimetinib combo will help his gait. Ughhhhh, I’m sooo worried for him .
        • December 2, 2016 at 1:46 am
        stevecathy
        Participant
        Meant no growth
        • December 2, 2016 at 1:46 am
        stevecathy
        Participant
        Meant no growth
        • December 2, 2016 at 1:46 am
        stevecathy
        Participant
        Meant no growth
        • December 2, 2016 at 1:45 am
        stevecathy
        Participant
        He has had scan since fall , there is a bleed again so doing 6mg dexamethasone 4 times day. He is little better but wobbly and can not walk far. He was on mek/take until brain mets in Sept. He now has had 3 keytruda infusion , the 3rd was Tues this week. The vemurafenib and cobimetinib will arrive tomorrow. Just seems slow to bounce back , getting worried . Doctor says mets are stable in growth just to allow keytruda to have response. Hopefully adding vemurafenib and cobimetinib combo will help his gait. Ughhhhh, I’m sooo worried for him .
        • December 2, 2016 at 1:45 am
        stevecathy
        Participant
        He has had scan since fall , there is a bleed again so doing 6mg dexamethasone 4 times day. He is little better but wobbly and can not walk far. He was on mek/take until brain mets in Sept. He now has had 3 keytruda infusion , the 3rd was Tues this week. The vemurafenib and cobimetinib will arrive tomorrow. Just seems slow to bounce back , getting worried . Doctor says mets are stable in growth just to allow keytruda to have response. Hopefully adding vemurafenib and cobimetinib combo will help his gait. Ughhhhh, I’m sooo worried for him .
      • December 2, 2016 at 1:16 am
      cancersnewnormal
      Participant

      Hi Cathy… sorry you and your husband are having to endure this scare! Am I correct in assuming the "radiation" you referred to was to treat his brain metastasis? Has he had a follow up brain MRI since falling down? There are so many possible reasons that he may experience instability and difficulty with walking. It could be the brain mets are swelling or bleeding in response to radiation or Keytruda. I am an atypical BRAF mutation, so those drugs do nothing to help me. I did, for a short period, have good response to MEK, but have no experience with vemurafenib or cobimetinib. I was on Keytruda for 20 months (29 rounds), and the brain mets that were cropping up at a rate of 2-4 per month stopped showing up after the second infusion! Was he still on MEK and Taf when all of this hit, or was that a previous treatment that he had completed? I hope you are able to get answers from his doctors very quickly.

      • December 2, 2016 at 1:16 am
      cancersnewnormal
      Participant

      Hi Cathy… sorry you and your husband are having to endure this scare! Am I correct in assuming the "radiation" you referred to was to treat his brain metastasis? Has he had a follow up brain MRI since falling down? There are so many possible reasons that he may experience instability and difficulty with walking. It could be the brain mets are swelling or bleeding in response to radiation or Keytruda. I am an atypical BRAF mutation, so those drugs do nothing to help me. I did, for a short period, have good response to MEK, but have no experience with vemurafenib or cobimetinib. I was on Keytruda for 20 months (29 rounds), and the brain mets that were cropping up at a rate of 2-4 per month stopped showing up after the second infusion! Was he still on MEK and Taf when all of this hit, or was that a previous treatment that he had completed? I hope you are able to get answers from his doctors very quickly.

      • December 2, 2016 at 1:29 pm
      Bubbles
      Participant

      Researchers are placing a lot of hope in combining different BRAF inhibitors with immunotherapy. The idea is to get the rapid response at it's better rate provided by the BRAFi with the durability that immunotherapy can provide. Side effects have been a problem for some when BRAFi was combined with ipi but things are looking good for folks taking BRAFi with anti-PD1 or anti-PD-L1.  Here's a recent report:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/brafmek-combined-with-immunotherapy.html

      It is early days for this approach but it does seem promising. Hang in there. Celeste

      • December 2, 2016 at 1:29 pm
      Bubbles
      Participant

      Researchers are placing a lot of hope in combining different BRAF inhibitors with immunotherapy. The idea is to get the rapid response at it's better rate provided by the BRAFi with the durability that immunotherapy can provide. Side effects have been a problem for some when BRAFi was combined with ipi but things are looking good for folks taking BRAFi with anti-PD1 or anti-PD-L1.  Here's a recent report:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/brafmek-combined-with-immunotherapy.html

      It is early days for this approach but it does seem promising. Hang in there. Celeste

      • December 2, 2016 at 1:29 pm
      Bubbles
      Participant

      Researchers are placing a lot of hope in combining different BRAF inhibitors with immunotherapy. The idea is to get the rapid response at it's better rate provided by the BRAFi with the durability that immunotherapy can provide. Side effects have been a problem for some when BRAFi was combined with ipi but things are looking good for folks taking BRAFi with anti-PD1 or anti-PD-L1.  Here's a recent report:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/brafmek-combined-with-immunotherapy.html

      It is early days for this approach but it does seem promising. Hang in there. Celeste

      • December 5, 2016 at 7:15 pm
      Mikers
      Participant

      Dear Cathy, does your doctor see advantage of using other type of targeted combo instead of previous?

      • December 5, 2016 at 7:15 pm
      Mikers
      Participant

      Dear Cathy, does your doctor see advantage of using other type of targeted combo instead of previous?

      • December 5, 2016 at 7:15 pm
      Mikers
      Participant

      Dear Cathy, does your doctor see advantage of using other type of targeted combo instead of previous?

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