strongly need advice

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    • December 7, 2016 at 11:59 pm
    Diadi-1707
    Participant

      Hello,everyone!I strongly need your advice !My husband has got melanoma stage 4 with various mets in nodules and brain.As we live in Russia the access to new drugs is impossible.But this is another story.In March when the mets in liver were found we decided to collect money and we did 4 shots of keytruda.But we stopped because of lack of money.In July we checked the whole body except for brain.All mets in liver have gone but nodules stay the same.In October we found 20 mets in brain and again various nodules.Did Gamma-knife twice and on the12of November did Opdivo.On Saturday we will plan to do the 3 shot.But yesterday my husband felt himself very bad.Diziness,weekness,vomiting once,some memory problems.Our blood counts drop twice.Our doctors told us that this is the end.That no use to do Opdivo or Ct as our lymphosytes are dropping and this is the marker that opdivo does not help.Please,I need your advice/You are more experienced than our doctors.What to do?Does anyone have the similar situation?

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        • December 8, 2016 at 2:17 pm
        keepthefaith11
        Participant
          So sorry to hear this. A question. Is your husband BRAF positive? This is important because the BRAF inhibitors work very quickly amd can help with tumor load.

          My dad has brainmets as well. Clean everywhere else. But the mets have caused him to have 3 seizures which the last one left him in pretty bad shape. He now in the hospital due to diarrhea. He has been tired, dizzy, heart fibrillations and has a hard time walking. All bloodwork look good but his body is wearing out. We hope this is temporary and that he can continue Opdivo, although as of right now they are going to hold off. He has 13 mets in the brain and latest scan showed all but 2 improving. The 2 were a bit bigger but they think it might be pseudoprogression. He is having another MRI today to check status.

          Opdivo works slowly. Has your husband had 20 brain mets pop up recently or are these the same ones he always had?

          Annie

          • December 8, 2016 at 2:17 pm
          keepthefaith11
          Participant
            So sorry to hear this. A question. Is your husband BRAF positive? This is important because the BRAF inhibitors work very quickly amd can help with tumor load.

            My dad has brainmets as well. Clean everywhere else. But the mets have caused him to have 3 seizures which the last one left him in pretty bad shape. He now in the hospital due to diarrhea. He has been tired, dizzy, heart fibrillations and has a hard time walking. All bloodwork look good but his body is wearing out. We hope this is temporary and that he can continue Opdivo, although as of right now they are going to hold off. He has 13 mets in the brain and latest scan showed all but 2 improving. The 2 were a bit bigger but they think it might be pseudoprogression. He is having another MRI today to check status.

            Opdivo works slowly. Has your husband had 20 brain mets pop up recently or are these the same ones he always had?

            Annie

            • December 8, 2016 at 2:17 pm
            keepthefaith11
            Participant
              So sorry to hear this. A question. Is your husband BRAF positive? This is important because the BRAF inhibitors work very quickly amd can help with tumor load.

              My dad has brainmets as well. Clean everywhere else. But the mets have caused him to have 3 seizures which the last one left him in pretty bad shape. He now in the hospital due to diarrhea. He has been tired, dizzy, heart fibrillations and has a hard time walking. All bloodwork look good but his body is wearing out. We hope this is temporary and that he can continue Opdivo, although as of right now they are going to hold off. He has 13 mets in the brain and latest scan showed all but 2 improving. The 2 were a bit bigger but they think it might be pseudoprogression. He is having another MRI today to check status.

              Opdivo works slowly. Has your husband had 20 brain mets pop up recently or are these the same ones he always had?

              Annie

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