It's been awhile since I posted and thought I would update. Not only did we survive 6 rounds of chemo, we made it through 6 weeks IMRT and we are waiting on CT results. Throughout all this, my dad has been a zombie. I asked 5 months ago for his surgeon (pericardial window) to order lab for myasthenia gravis, but he never did. All the docs related his fatigue and weakness to his illness/hospitalization/age. Throughout all of his treatment, outside of a low HgB requiring 2 units of PRBC, his lab values have remained all quite good, but he went from weak and tired to unsteady and collapsing. He started to fall and just related it to his legs buckling. His oncologist reaffirmed it was chemo causing it. Then, when it didn't get better after chemo and with therapy and time, radiation was to blame. However, as I watched him, he just could not connect intent to move to movement, I started to think MG. He might walk a few steps, but after any activity he was exhausted. Like paralyzed with fatigue. He always worked to breath after he spoke or did any activity. His voice was hoarse since first going into the hospital. He gets tired chewing and can only eat moist foods. He does not have double vision, but had it briefly months ago.

We finally got a referral to a neurologist and are awaiting results to learn if my dad also has Myasthenia Gravis. The neurologist suspects he does based on his neurological exam and symptom descriptions. He prescribed Mestinon 60 mg TID and he started it. His voice has come back, no longer a whisper. He is able to keep his eyes open, walking is a little easier. Probably a good indication that he has MG. Tomorrow, we meet with oncologist to get results from CT. If CT results show disease is stable, we are supposed to start Keytruda. I am wondering if any survivors here have tried immunotherapy? If any of you have struggled with MG? And wondering whether the treatment for one impacts the other? Any insight always welcome. I am most interested at this point to improve symptoms of MG and hopefully improve the quality of each of his days.

Thanks so much, Gail

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