My father has 6 brain mets
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My father has 6 brain mets

› Forums › General Melanoma Community › My father has 6 brain mets

  • Post
    • October 3, 2017 at 8:11 pm
    Sertan
    Participant
    Hello i am Dr. Sertan, i am an ophtalmolog and sorry for my english.
    My father stage 4 with 6 brain metastases.
    2009 first skin lesion
    2013 lung met surgical removal
    2015 second lung met cyber knife
    Braf mek inh since 2015
    Now 6 brain tumors since last week
    Loss of power on left leg
    Started wbrt and will start nivo+ipi

    Any chance of long term survival
    Any other treatment recomendations

    And everybody can write me about any eye problems

    Very good forum lots of nice people

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  • Replies
      • October 3, 2017 at 8:26 pm
      Janner
      Participant

      My first question would be why not gamma knife or SRS for the brain mets?  Typically better choice than WBRT unless that cannot be avoided.  IPI/NIVO would be the treatment choice by most here and yes, there are long term survivors who have been where your father is now.

        • October 3, 2017 at 8:40 pm
        Sertan
        Participant
        Thank you for your answer
        Gamma and srs hard to reach in Turkey even i am a doctor. Few centers and has to wait
        Power loss at left foot which is increasing day by day so our oncolog order wbrt
        Also nivo is not supported by goverment just ipi supported
        I bought 4 nivo 10 ml with my money and it cost to much in here
        Can we make gamma knife after wbrt
        Can we make gama knife during nivo ipi treatment
        • October 4, 2017 at 12:50 am
        Bubbles
        Participant

        I am sorry for what you and your father are going through and sorry that finding treatment is so difficult.  Here are a raft of articles about the combination of immunotherapy and radiation:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/10/radiation-and-immunotherapynot-just.html  

        facts:  the combo (together) of radiation and immunotherapy is more effective than either treatment alone

        WBR causes damage that SRS or gamma knife can avoid

        there is no need to have SRS AFTER WBR….that would just cause more damage and no benefit

        the benefit of gamma knife or SRS is that radiation is directed at the tumor (or multiple tumors) through a zillion swipes through brain but with no specific damage to one spot in the brain except where it is confluent on the tumor.

        NO!  You do NOT need to wait to have radiation after immunotherapy…or wait for immunotherapy to have radiation.  Concurrent administration is better and there is no increased risk of radiation necrosis or bleeding when the treatments are combined. (The link will take you to articles that note this.)

        I wish you and your father my best.  Celeste

        • October 4, 2017 at 5:40 am
        Sertan
        Participant
        Thanky you very much
        Today wbrt will finish
        Tomorrow i will give nivo and ipi
        I am crying while writing
        His leg is getting worse everyday
        Today he can not walk without helping
        He is 65 years old he was a very sportive and active man
        Thank you for your answers and helps
        Knowing that someone understanding and feeling your situation is a good thing

        I have diagnosed early stage chroidal melanoma ( melanoma of eye ) in 5 patients in my 7 years of ophtalmolog career and i am helping them stil.
        And now i am prying god to help my father…
        Thank you everyone

        • October 4, 2017 at 12:59 pm
        Bubbles
        Participant

        I can feel your sadness.  But know this – good responses can be attained with the ipi/nivo combo….esp when it is simultaneous with, or administered in close proximity to radiation (of any kind)!!!  It takes a minute for the patient to bounce back after WBR and immunotherapy can take a little time as well (average time to response is about 12 weeks…there is a good graph showing response time in the second post in the link that is contained within the link I gave you above)…but, stay hopeful.  Many on this board have done well with both these things.  Not to mention, the support it is clear you are giving your father is worth more to him than you will ever know!!!  Hang in there.  I will hold you and your father in my heart.  celeste

      • October 4, 2017 at 1:54 pm
      ed williams
      Participant

      Hi Sertan, I would just like to add to the great info that Celeste has already given you. If you are interested there is a Oncologist panel presentation from summer of 2017 talking about recent findings in treating the brain with Immunotherapy drugs. Best Wishes!!!Ed https://www.youtube.com/watch?v=X5xGQpdp9OA

        • October 4, 2017 at 4:23 pm
        Sertan
        Participant
        Thank you very much for all of you for helping and giving support to my father and me

        I will be strong and fight with my father
        There is always hope thanks to all scientist finding new therapies for many diseases, they are angels on earth

        I will post our situation and try to write to other posts if i know something to help

        Thank you again all you good people

        • October 4, 2017 at 7:11 pm
        obtu.bt
        Participant
        Hi Sertan this forum is really great to keep up to date about melanoma news.
        Babanızın en kısa zamanda sağlığına kavuşmasını dilerim.
        İpi / nivo + radiation gerçekten çok güzel sonuçlar veriyor.
      • October 5, 2017 at 6:00 am
      sgreenberg
      Participant

      Hi Dr. Sertan, my wife has had brain mets for almost two years now – treated with SRS, BRAF, Keytruda, and soon Opdivo/Yervoy. There is hope. Note that we are neighbors (I'm in Israel), and we have outstanding Melanoma treatment centers here, which you may consider. Best of health!

      • October 5, 2017 at 9:08 am
      stars
      Participant

      I am so sorry to hear this. I don't have any advice but I wish you both strength and I hope your father gets the breakthrough in treatment that he needs. You sound like an amazing son/daughter.

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