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My father has 6 brain mets

Forums General Melanoma Community My father has 6 brain mets

  • Post
    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
        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.

            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
              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

                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

                  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

                  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

                      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

                        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.
                        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!

                          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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