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  • Cancer Immunotherapy With Myasthenia Gravis

    Posted by Jodi Enders on January 4, 2023 at 5:25 pm

    I frequently have people with Myasthenia gravis inform me that they sadly also have cancer. I get asked if anyone has had luck or worsened symptoms with specific cancer medications.

     

    Immune Checkpoint Inhibitors is a cancer treatment that helps the body detect and attack cancer cells. “These medications should be used cautiously or avoided, when possible, in patients with Myasthenia Gravis, as they have been shown to exacerbate the condition. Cases of MG have been reported in patients who have had prior myasthenia and those who do not have a history of MG” (cancer.gov).

     

    Suppose immune checkpoint inhibitors are, or were, necessary in your treatment. In that case, Cisplatin (Platinol) and Fludarabine (Fludara) are reported to be 2 drugs that pose more risk than other options. Have you been on either of these before? How, if at all, did it affect your MG symptoms?

     

    Have you received cancer treatment that did not affect your MG?

     

    – Jodi, Team Member

    Tracie replied 1 year, 9 months ago 1 Member · 1 Reply
  • 1 Reply
  • R Knabel

    Member
    January 10, 2023 at 2:23 pm

    The moderate MG I now have was a result of a cancer immunotherapy trial I was in 4 years ago.  I received 2 of the projected 4 infusions of Nivolumab in a clinical trial when a severe ocular as well as generalized MG reaction manifested itself due to my antibodies overreacting and therefore attacking a number of different organs and muscles in my body which resulted in the damage which lead to MG……….my cancer institution admitted me immediately and I remained there for 2 weeks as they tried to figure out what had gone wrong with me and the trial.  With my institutions treatment, the ocular MG disappeared after several days and my body has healed itself quite well however the generalized MG has remained.  I am grateful though to my institution as with their guidance, experience and care I am now cancer free and am more than happy to have traded cancer for generalized MG.

  • Tracie

    Member
    March 27, 2023 at 1:39 pm

    My story is long but I’ll try to make it short. I was initially denied immunotherapy for my stage 3/4 melanoma. We started second line treatment of Braftovi/Mektovi for 4 months until I had a rare life threatening side effect. This landed me in the hospital for emergency surgery which induced a severe myasthenia flare. I have MUSK MG so my treatments are limited. 2 months later I had new abdominal growths so we started Nivolumab as I had nothing to lose. My physician team decided PLEX would be the best treatment for my MG while receiving immunotherapy. The Nivolumab wasn’t working so we added 4 treatments ipilumimab (Yervoy) to the Opdivo. I received PLEX and then the immunotherapy every 4 weeks. There was no evidence of disease after four months and I continued the PLEX and Opdivo for another few months. We then transitioned me back to Rituximab every 6 months and continued the Nivolumab (Opdivo) for another year. I continue to have no evidence of cancer on my scans. I was  weaker and more fatigued during treatment but it did not induce a flare. I believe the cancer was attributing to my MG as I was having increased symptoms before the cancer was discovered.

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