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Leptomeningial melanoma mystery
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Leptomeningial melanoma mystery

› Forums › General Melanoma Community › Leptomeningial melanoma mystery

  • Post
    • November 30, 2011 at 8:25 am
    Tracey
    Participant
      Hi all!
      Looking for a bit of guidance to offer the doctors caring for my husband, Steve.

      Steve was diagnosed in June with Leptomeningial Melanoma, that had also metastised in a lymph node and also has a little something posterior spine at about T4. Biopsy of his lymph node tested positive for the BRAF gene mutation and he began treatment with Vemurafenib and has responded really well. Last LP showed scant cells in fluid, lymph node had shrunk over 70%, as had spot on spine. (there is something questionable regarding his spleen, but oncologist is not too worried about it). He had experienced side effects which cleared when his dose was reduced to 720 mg twice a day.

      Here’s the mystery. He is suffering from nausea and vomit, migraines and sixth nerve palsy over the last week. He had become quite dehydated over the weekend and a bit out of sorts. There is inflammation creating pressure and indicating poor drainage of spinal fluid. Why might that be?

      We are living in Kelowna, BC and receiving treatment out of Vancouver. Steve is in hospital where we live and doctors here seem to be at a lose, and they are working really hard and feel he is well enough to continue his treatment. Our team in Vancouver is not offering any guidance except steriods. No one here or in Vancouver has much experience with leptomeningial melanoma except for Steve’s case. We certainly don’t want him off the drug as we are afraid this is the only option. I think we need any suggestions as to what else to look for quickly. I certainly would be so very grateful for input.

      With all my heart, thank you!
      Tracey

    Viewing 8 reply threads
    • Replies
        • November 30, 2011 at 10:30 am
        FormerCaregiver
        Participant

          Tracey, I am sorry to read of Steve's condition. I feel that his symptoms could be due
          to spread of melanoma "to the tissue that lines the outside of the brain and spinal
          cord". (See: http://oncolink.ba0.biz/experts/article.cfm?c=3&s=28&ss=125&id=2315)

          Perhaps you could ask the oncologist if your husband could try Yervoy (ipilimumab) soon?
          The chemo drug Temodar (Temozolomide) is another option if Yervoy is unavailable.

          Hope this helps.

          Frank from Australia

          • November 30, 2011 at 10:30 am
          FormerCaregiver
          Participant

            Tracey, I am sorry to read of Steve's condition. I feel that his symptoms could be due
            to spread of melanoma "to the tissue that lines the outside of the brain and spinal
            cord". (See: http://oncolink.ba0.biz/experts/article.cfm?c=3&s=28&ss=125&id=2315)

            Perhaps you could ask the oncologist if your husband could try Yervoy (ipilimumab) soon?
            The chemo drug Temodar (Temozolomide) is another option if Yervoy is unavailable.

            Hope this helps.

            Frank from Australia

            • November 30, 2011 at 10:30 am
            FormerCaregiver
            Participant

              Tracey, I am sorry to read of Steve's condition. I feel that his symptoms could be due
              to spread of melanoma "to the tissue that lines the outside of the brain and spinal
              cord". (See: http://oncolink.ba0.biz/experts/article.cfm?c=3&s=28&ss=125&id=2315)

              Perhaps you could ask the oncologist if your husband could try Yervoy (ipilimumab) soon?
              The chemo drug Temodar (Temozolomide) is another option if Yervoy is unavailable.

              Hope this helps.

              Frank from Australia

              • December 1, 2011 at 2:42 pm
              Tracey
              Participant
                Good news!

                The cause for Steve’s recent episode has been rectified and he has made a turn around! What a great team here at KGH. The lesson here for me is to continue having faith. Four months ago Steve and I took an awesome course called The Life Program at Inspire Health in Vancouver. One thing they spent time talking about was, if things appear to be going south don’t assume it’s progression of the disease because it could be something very fixable yet at the time may seem very scary. I highly recommend that program and Inspire Health. Anything that empowers you while dealing with cancer is well worth it.

                Keep up the fight all you divine troopers!
                Tracey

                • December 1, 2011 at 2:42 pm
                Tracey
                Participant
                  Good news!

                  The cause for Steve’s recent episode has been rectified and he has made a turn around! What a great team here at KGH. The lesson here for me is to continue having faith. Four months ago Steve and I took an awesome course called The Life Program at Inspire Health in Vancouver. One thing they spent time talking about was, if things appear to be going south don’t assume it’s progression of the disease because it could be something very fixable yet at the time may seem very scary. I highly recommend that program and Inspire Health. Anything that empowers you while dealing with cancer is well worth it.

                  Keep up the fight all you divine troopers!
                  Tracey

                  • December 1, 2011 at 2:42 pm
                  Tracey
                  Participant
                    Good news!

                    The cause for Steve’s recent episode has been rectified and he has made a turn around! What a great team here at KGH. The lesson here for me is to continue having faith. Four months ago Steve and I took an awesome course called The Life Program at Inspire Health in Vancouver. One thing they spent time talking about was, if things appear to be going south don’t assume it’s progression of the disease because it could be something very fixable yet at the time may seem very scary. I highly recommend that program and Inspire Health. Anything that empowers you while dealing with cancer is well worth it.

                    Keep up the fight all you divine troopers!
                    Tracey

                    • December 1, 2011 at 2:43 pm
                    Tracey
                    Participant
                      Good news!

                      The cause for Steve’s recent episode has been rectified and he has made a turn around! What a great team here at KGH. The lesson here for me is to continue having faith. Four months ago Steve and I took an awesome course called The Life Program at Inspire Health in Vancouver. One thing they spent time talking about was, if things appear to be going south don’t assume it’s progression of the disease because it could be something very fixable yet at the time may seem very scary. I highly recommend that program and Inspire Health. Anything that empowers you while dealing with cancer is well worth it.

                      Keep up the fight all you divine troopers!
                      Tracey

                      • December 1, 2011 at 2:43 pm
                      Tracey
                      Participant
                        Good news!

                        The cause for Steve’s recent episode has been rectified and he has made a turn around! What a great team here at KGH. The lesson here for me is to continue having faith. Four months ago Steve and I took an awesome course called The Life Program at Inspire Health in Vancouver. One thing they spent time talking about was, if things appear to be going south don’t assume it’s progression of the disease because it could be something very fixable yet at the time may seem very scary. I highly recommend that program and Inspire Health. Anything that empowers you while dealing with cancer is well worth it.

                        Keep up the fight all you divine troopers!
                        Tracey

                        • December 1, 2011 at 2:43 pm
                        Tracey
                        Participant
                          Good news!

                          The cause for Steve’s recent episode has been rectified and he has made a turn around! What a great team here at KGH. The lesson here for me is to continue having faith. Four months ago Steve and I took an awesome course called The Life Program at Inspire Health in Vancouver. One thing they spent time talking about was, if things appear to be going south don’t assume it’s progression of the disease because it could be something very fixable yet at the time may seem very scary. I highly recommend that program and Inspire Health. Anything that empowers you while dealing with cancer is well worth it.

                          Keep up the fight all you divine troopers!
                          Tracey

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