Lambert-Eaton News Forums Forums The Big C Not All LEMS Triggered by SCLC

  • Michelle Keogh

    Member
    August 25, 2021 at 5:06 pm

    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

    • Price Wooldridge

      Member
      August 25, 2021 at 5:31 pm

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

      https://lamberteatonnews.com/news-posts/2020/01/27/blood-levels-of-certain-antibodies-may-quicklyidentify-lung-cancer-in-lems-patients-study/

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

    • Price Wooldridge

      Member
      August 25, 2021 at 5:35 pm

      @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.

      • Michelle Keogh

        Member
        August 25, 2021 at 7:44 pm

        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.

    • Price Wooldridge

      Member
      August 25, 2021 at 5:35 pm

      @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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