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    • #14426
      Dawn DeBois

      Whenever I read material about LEMS, it stated that LEMS symptoms would go away once the cancer, typically small cell lung cancer, was cured, if the LEMS was caused by the cancer. I’m not a cancer patient with LEMS so I can’t attest to that being a fact or not. How about you? Did you have cancer with your LEMS? Once the cancer was cured, did your symptoms go away as it’s been indicated they would?  Inquiring minds really would like to know!

    • #18473

      I have spoken and known many people from around the world over 14 years with Lems and a lot who got their Lems from the BIG C.
      Not one has said their Lems symptoms went away nor do they know anyone who has experienced that, Every Medical paper or document states this will happen, Your body creates antibodies in respect to the Big C  .. that why you have Lems. It though you had the BIG C Everywhere in your body and still does .. that why you still have Lems and NO Big C
      Now why isn’t there research on a more relevant matter to Lems with the Big C
      <section>In general, LEMS responds well to symptomatic and immunosuppressive treatments. However, LEMS can affect every day activities and quality of life of individual patients. Life expectancy depends on the presence of lung cancer. Without cancer, the life expectancy is considered normal. As SCLC (see this term) is a very aggressive cancer, prognosis of patients with LEMS and SCLC is often rather poor. Median survival is 17-24 months, although the amount of patients with long-standing remission or cured is approximately 20% (compared to <2% of patients with a SCLC without LEMS).


      • #18474
        Price Wooldridge

        @kevin thanks for your perspective on LEMS and the Big C. You are so right, LEMS affects almost all aspects of our life. Mine was not triggered by cancer, so my perspective is limited. Everything I read says 50-60% of cases are triggered this way. In posts and comments I read here and in Facebook groups, the subject is not mentioned that often. I’ve got no explanation for that.
        I have read a couple of Big C related articles on our lamberteatonnews.com website, so be sure and look around.

    • #18476

      Hi Price

      Maybe you can direct me to articles on here as I cant find anything beyond stats on prevalence ?
      Most medical articles say Anti Bodies against Neuro junctions its a lot more specific then that sweeping statement. hence why 20 % of people with SCLC and lems go into long term remission or cured of their cancer .. Where do you ever see that in SCLC .. but no research go figure LOL




      • #18479
        Price Wooldridge

        @kevin orpha.net is a good resource. I would also suggest you search nih.gov. I jut did and there are a numbers of papers. I didn’t go digging for relevance to your interests. This is a good resource for those deep diving into LEMS.

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