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    • #15292
      Dawn DeBois
      Participant

      With the significant increase in the number of LEMS patients being diagnosed, there is also a significant increase in the concern these newly diagnosed patients have about their LEMS possibly being caused by a yet to be diagnosed cancer. Appoximately 50% of LEMS cases are paroneoplastic, meaning they are tumor caused.

      Poll: If you are a LEMS patient and you had cancer, did your LEMS symptoms go away once the cancer was treated and put into remission? 

      Also, what piece of advice would you give the newly diagnosed LEMS patients?

    • #15781
      Debbie Lewis
      Participant

      I had my Chest CT last week – Thursday,  April 30, 2020. Got the result today. I have a small nodule in my lower left lung. It’s about 3 mm. I am seeing Pulmonologist tomorrow at 1:20 pm to talk about it AND to do a breathing test. Dr. Kim, my neurologist,  wanted me to see the pulmonologist before we left for GA on May 20 for my granddaughter’s high school graduation.  I don’t know yet if it’s cancer … I was hoping that I would have the autoimmune LEMS. Praying that is still the case and this is not cancer. I hope to know more soon one way or another.

    • #15783
      Dawn DeBois
      Participant

      @dlewis,

      I’m sorry to hear that they found something troublesome on your CT scan. Nobody ever wants to hear that.  I know two LEMS patients that’s LEMS was caused by a tumor and they are both in remission. For some, the LEMS symptoms have allowed an earlier diagnosis of cancer, which has given them a leg up on treating it and thus beating it! Please keep us posted and know you will be in my thoughts and prayers until you find out.

      Are they adjusting how they are holding graduations in GA due to COVID19?

    • #15789
      Debbie Lewis
      Participant

      Thank you Dawn. As far as I know they’re still going ahead. My daughter hasn’t been told otherwise. Even if they don’t have a formal graduation we will celebrate her achievement nonetheless! 🤗 She’s the reason I put off my IVIG infusions until June 5th. I promised her I’d be there for her graduation – no matter what – and I’m going to keep that promise! 🤗

    • #15790
      Debbie Lewis
      Participant

      Hi Dawn,

      Good news: the ‘nodule’ is from living in the Mojave desert, downwind from Trona and the sulfur mines, AZ desert & here with the wildfire smoke a few particles have lodged in my lung and the body doing what it does encapsulated the foreign object. I actually have two 3 mm spots. So I’ll do another Chest CT next year to keep an eye on it. But the dr wasn’t concerned at all – right now. If it changes next year, then we may need to look into it more so. Other tests will follow, of course, but I’m thrilled with this outcome. Yay! 🤗❤

    • #16952
      Mary
      Participant

      That is great news Debbie. Glad to hear that about the nodule.

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