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    • #18407
      Price Wooldridge
      Moderator

      Recently I’ve read a couple of articles on LEMS triggered by rare cancers. Most of us associate a cancer trigger as Small Cell Lung Carcinoma (SCLC). We also recently had a new forum member join who’s LEMS was triggered by a rarer form of cancer.
      Here’s a Flash Briefing I recently recorded on one such rare case.

      https://soundcloud.app.goo.gl/1KM6pdND13qFsYZP9

    • #18709
      Michelle Keogh
      Participant

      As a newly diagnosed LEMS patient, I’m wondering what some of you have used to determine your risk.  I have read about the DELTA-P scores, and the links between some antibodies that may quickly spot lung cancer.   My doctor doesn’t think I am at risk, but to put my mind at ease I am going to have a lung, abdominal and pelvis CAT with and without contrast this weekend.  Please let me know how often you do these types of screenings.  Thanks for any info.  Michelle

      • #18711
        Price Wooldridge
        Moderator

        @michellekeogh I hope you read this article directly addressing your comments.

        Blood Levels of Distinct Antibodies May Quickly Spot Lung Cancer in LEMS Patients, Study Says

        To my knowledge, I did not have any additional specialized blood tests around diagnosis beyond VGCC. No SOX.

      • #18712
        Price Wooldridge
        Moderator

        @michellekeogh. I think it’s pretty routine to get full body CT and PET scans shortly after diagnosis. Close watch by CT for up to two years. In my case we did CTs every 3 then 6 months. My next is coming up quickly which I expect to be no more than yearly due to my medical condition and 2 years from diagnosis. Hope this helps.

        • #18714
          Michelle Keogh
          Participant

          Thanks so much for the information.  I read that article too!  It is so helpful to actually converse with someone who knows what LEMS is and has experienced what I’m starting to go through in the early stages of diagnosis.

      • #18713
        Price Wooldridge
        Moderator

        @michellekeogh. I think it’s pretty routine to get full body CT and PET scans shortly after diagnosis. Close watch by CT for up to two years. In my case we did CTs every 3 then 6 months. My next is coming up quickly which I expect to be no more than yearly due to my medical condition and 2 years from diagnosis. Hope this helps.

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