Brain Mets and cancer in the Meninges
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Brain Mets and cancer in the Meninges

› Forums › General Melanoma Community › Brain Mets and cancer in the Meninges

  • Post
    • April 10, 2018 at 10:19 pm
    Steve D
    Participant

    My wife is on a Opdivo/Yervoy treatment and has had cyber knife on her 5 brain mets. We are 8 weeks into treatment and the docs are starting to talk like its not workking. (for 6 months earlier she was on Tafilar and mekinst and responded well till we found the brain mets) Docs are talking about returning to TAF/MEK medication but my understanding is that it doesn't work well above the neck. Any ideas about how long this immunotherapy can take to work (12 weeks I've heard) and when to jump to something else?  

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      • April 11, 2018 at 2:30 am
      Bubbles
      Participant

      Hi Steve, 

      I am sorry for what you, your kids and your wife are going through.  Here is a post on basic melanoma treatments (with a graph on time to response on immunotherapy) that I put together:  

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

      Immunotherapy takes time.  I have an additional report on my blog where melanoma experts talk about immunotherapy, noting the need to:  "Be patient with the patient!!!"

      If you put brain mets into the search bubble you will find a zillion posts…most of which address the fact that when you combine immunotherapy (and the premier immunotherapy for melanoma is the ipi/nivo combo) with radiation…melanoma peeps with brain mets get a result better than either of these treatments alone.

      However, I put up a post today, that reiterates that BRAF/MEK combo's ARE effecive in the brain for melanoma patients who are BRAF positive.  In fact, BRAF/MEK combo's can be used to aid in a rapid response, and before the tumors learn to work around that effect (often within 6-9 months) patients can be switched to immunotherapy, in hopes of attaining a more durable response with the lowered tumor burden.  Additionally, though not the most common scenario, there are those who are well maintained…in brain and body….on targeted therapy for years.

      Here's a link to a zilliion brain met posts:  

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=brain+mets&max-results=20&by-date=true

      So, yes…immunotherapy takes a minute…but can work in brain and body.  Targeted therapies (BRAF/MEK combo's) can work in the brain as well when the patient is BRAF positive.

      Not sure how much this helps you.  Hang tough.  Ask more questions as you need.  I wish you and your wife my best.  celeste

        • April 19, 2018 at 8:41 pm
        Steve D
        Participant

        Thank you for that. We are worried about the meninges as well. There is cancer there too and talk of LMD. I'm hoping that the treatments can reach there as well. Anything on strategies in that area? Thanks again.

         

        • April 20, 2018 at 1:45 am
        Bubbles
        Participant

        I hope you don't have to face LMD…but here are the posts I have regarding that:

        http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=lmd  

        Posts by "Adriana Cooper" might also be helpful if LMD becomes a serious consideration.  Hang in there.  Celeste

      • April 11, 2018 at 1:03 pm
      marta010
      Participant

      Hi Steve – for what it's worth, my husband was diagnosed 6 years ago with mets to his brain and body.  He just resumed Keytruda after a brain met that was treated with gamma knife in 2012 decided to act up.  He's been on Tafinlar for 4+ years, including a 4 month stretch where he was concurrently on Keytruda and Tafinlar.  We can only assume that the Tafinlar helped keep his brain stable throughout this time.  Take care.

      Ann

        • April 13, 2018 at 5:14 pm
        Holliesig
        Participant

        Hi Steve, My dad is also stage iv with 6 brain mets- he did SRS and then they did 1 round of opvido/yervoy and he ended up in the hospital for swelling. They put him on high dose steroids and switch him to the MEK/Taf combo.. He had an MRI recently that showed reduction in largest 3 tumors and stabalization in the others, but they do think that the results are largely from the SRS and opvido/yervoy (apparently this keeps working well after the treatment). Our oncologist phrased it that we were using the MEK/taf to "buy us time" to get back to immunotherapy. We just tapered off steroids, about to stop the chemo and switching back to the immunotherapy next week. 

        • April 19, 2018 at 8:52 pm
        Steve D
        Participant

        Ann, I'm glad that you are 6 years and running. We are about to have a conversation about introducing Ketruda into the mix. We were told that even adding the Taf/Mek would be risky because of the Opdivo/Yervoy already in her system. (3 infusions before stopping and going on taf/mek) So we are already worried. So far, it's been a week on Taf/Mek and nothing as far as side effects go. The bloodwork will tell us more about that. She is improving but slowly. What's your experience with Keytruda, did your husband ever have Opdivo too?  Seems like my wife is becoming a bit of a chemical storehouse. Thanks

        • April 19, 2018 at 8:53 pm
        Steve D
        Participant

        Ann, I'm glad that you are 6 years and running. We are about to have a conversation about introducing Ketruda into the mix. We were told that even adding the Taf/Mek would be risky because of the Opdivo/Yervoy already in her system. (3 infusions before stopping and going on taf/mek) So we are already worried. So far, it's been a week on Taf/Mek and nothing as far as side effects go. The bloodwork will tell us more about that. She is improving but slowly. What's your experience with Keytruda, did your husband ever have Opdivo too?  Seems like my wife is becoming a bit of a chemical storehouse. Thanks

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