• LEMS treatments

    Posted by Mary on October 5, 2020 at 6:15 pm

    Hey everyone. I am interested to know if the Fridapse does not continue to work for my sister what would be the next line of defense. She is dealing with so much with her SCLC having to be treated and having to physically be able to get there we cannot miss a beat. She already missed a whole month of chemo due to LEMS.

    Is anyone on Fridapse and other oral meds?

    What would other treaments be?

    What can we expect and is LEMS progressive or does the meds keep it at bay?

    thank you!

    Mary

    Mary replied 3 years, 7 months ago 3 Members · 4 Replies
  • 4 Replies
  • Price Wooldridge

    Member
    October 5, 2020 at 11:26 pm

    Hi again Mary. The absolute first protocol if a patient is diagnosed with LEMS and found to have SCLC is treat the cancer as first priority. There are a number of medications used to treat the LEMS itself. I’ll just mention amifampridine, pyridostigmine, and immunoglobulin. There are other options too.
    I’m sure one of the moderators will kick in with further information.

  • Mary

    Member
    October 6, 2020 at 6:45 am

    Thanks-LEMS is such a rare dx. The onc neuro never heard of it-so referred my sister to a neuro specialist in muscle disorders. The original one-onc neuro still wants to see my sister-and now she has the other doc as a referral. She has only been able to do phone meetings so far due to the weakness brought on by LEMS.

  • Ashley

    Member
    October 6, 2020 at 8:44 am

    Hey @sweepea32

    I’m sorry your sister missed a month of chemo, I know that was a hard choice to make.  As Price said, the number one priority with LEMS patients with SCLC is to treat the underlying cancer. Symptoms may worsen if the cancer is not treated.

    I personally do not take firdapse but most of the LEMS patients I know do. I was unable to stick to taking it four times a day with my work schedule (I’m an operating room nurse also). There are also a few other treatment options. I receive IVIG (IV Immunoglobulin G) treatments every month that keep my LEMS symptoms at bay for the most part.

    Here is a really informative article on some of the other treatment options for LEMS. I also want to share an article on LEMS and cancer with you. If you’re looking for something more detailed about medication/treatment options, the Muscle Dystrophy Association has a ton of LEMS info as well and you can find the article here.

    LEMS is normally not usually considered progressive, but patients with cancer seem to have a more progressive course according to the Muscular Dystrophy Association.

    I hope this will give you some of the answers you are looking for!

  • Mary

    Member
    October 6, 2020 at 6:51 pm

    Oh thank you for the links these are things I am looking for. It seems noone knew of this syndrome when my sister started having symptoms so the oncologist chose to let her get her LEMS symptoms under control since she could not get to the hospital. Living on the 5th floor with no elevator at this time is not good. I will keep these articles and read them. Again thank you for taking the time. I am an RN also but work in an office environment. I am much older than you and did my time on the units. You must be VERY strong. Again thanks for being so kind and taking the time to post.

     

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