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Leptomeningeal prognosis
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Leptomeningeal prognosis

› Forums › Caregiver Community › Leptomeningeal prognosis

  • Post
    • November 13, 2018 at 5:18 pm
    Diane F
    Participant

      Caregiver here-to my significant other diagnosed 6 mos. ago with leptomeningeal melanoma, brain, spine and adrenal gland mets.  craniotomy, whole brain and targeted radiation, and now 4 rounds of Ipi/Nivo under our belt.  moving on to Nivo alone in a few weeks.  This is a hard road-my hat's off to you all.  Scans this week and next to determine effects of all treatments.  I'm a nervous wreck at what they'll find.  so hard to see your Beloved healthy and active one day and diagnosed 2 days later.  Simply Surreal.  So little is known about prognosis for LM, even with amazing drugs we're on.  Not really asking a question, just reaching out and sending all of you my hope and supportive positive thoughts.  

      all my best–Diane

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    • Replies
        • November 13, 2018 at 6:02 pm
        RichInLife2
        Participant

          Hi Diane,

          I don't know anything about that particular form of melanoma but I do know the feeling of anxiety and the not knowing before the scans and the lack of control over everything that I think is worse for care-giver than the patient. I think the anxiety before the first scan after treatment is the worst, although it never goes away completely. I really can't offering you anything but hope and the assurance that there will be good days as well as the bad days. Please come back often and check in. There are lot of great folks here who understand and who care. Wishing you and your SO peace, health and hopeyness.

          -Rich

            • November 17, 2018 at 2:15 pm
            Diane F
            Participant

              Thank you so much, Rich, for responding. I guess this is yet another stage in the cancer fight…the anxiety of waiting to find out if all we've been through has been successful or not.  I love your word, "hopeyness".  That's great…I'm filing that away 🙂

              Diane

            • November 13, 2018 at 9:29 pm
            WithinMySkin
            Participant

              Hi Diane. I can't offer any help beside a huge internet hug! I know you cargivers are our rocks. I don't know what I would have done if my husband wasn't there for me throughout my treatments. He held it together for me when I was falling apart, and it honestly made me a better wife now that I'm 'no evidence of disease'. Wishing you and your significant strength and hope and all the good vibes – hang in there!!!

              Lauren

                • November 17, 2018 at 2:18 pm
                Diane F
                Participant

                  I'm so happy for you, Lauren, that you're "no evidence of disease".  That's amazing.  And thanks for the internet hug 🙂  This community is really lovely…

                • November 13, 2018 at 11:38 pm
                lkb
                Participant

                  You and your beloved have certainly been through it! Scanxiety is real. Wishing you both the best.

                    • November 17, 2018 at 2:20 pm
                    Diane F
                    Participant

                      "SCANXIETY" WOW.  perfect word.  wish I knew about this stage before it came out of nowhere and smacked me hard 🙂  certainly explains the new levels of anxiety never before achieved….thank you for the good wishes and same to you…

                    • November 15, 2018 at 8:57 pm
                    casagrayson
                    Participant

                      Hi, Diane.  I'm sorry you are dealing with this.  🙁  Thank you for being such a supportive caregiver.  May I ask you a question?  How was your husband's leptomeningeal disease diagnosed?  My husband has some suspicious lesions in his brain that the neurologist say cannot be ruled out as being lepto without a brain biopsy.  We are in a watch and wait mode … with another MRI scheduled in April.

                       

                        • November 17, 2018 at 2:26 pm
                        Diane F
                        Participant

                          Hi Susan 🙂  He was diagnosed with melanoma during a craniotomy to remove tumors.  After two months of symptoms of lower spinal cord impact, an MRI of the spine and a lumbar puncture confirmed it was at leptomeningeal stage.  Drs. should have done puncture right away but he appeared too healthy (still working 5 days a week) to have leptomenigeal melanoma.  Wishing you strength and courage right back…this caregiving stuff is not something I ever anticipated-I mean who does…

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