Hi Tyson,

My thymoma wasn't cancerous, although my surgeon thought that I might need radiation (so maybe it was, sorta?). My oncologist said that I didn't need it, so I went with her advice. I had also come across some information I picked up in Sept. about a conference by WHO that took place in August re. thymomas.

They decided that anyone in stage 1-2, with a type A, AB, and sometimes B (stage 1 only I think), don't require radiation just because the stats. are the same for radiation/no radiation in terms of re-occurence. Something like 90% it wont come back. The odds were in my favour. My tumour was also pretty big, though, and was growing towards my heart like yours. My thymus was also really hyperplastic.

Do you know what type of thymoma you had, and the stage it was in?

Cellcept might be no good. There's an increased risk of cancer, and because we've already sorta had cancer (albeit a very treatable, low-risk type), it would be too risky. My neuro. wants to try Imuran first at least because the risk of cancer isn't as high as cellcept.

About the plasma exchange. Precisely the same thing happened to me, as well as that nurse I had met at the hospital. i had plasmapheresis right before my surgery. Prior to this, I had IViG, and a round of plasmapheresis just prior to that-so lots of infusions/blood exchanges. You'd think I would have been like King Kong after the surgery, but two weeks later, my symptoms were much worse- the same type of symptoms, but more intense.

I then started prednisone, and there wasn't much improvement for a while. In fact, I felt weaker early on, and developed new symptoms (like ptosis very rarely in my left eye, and difficulty swallowing). I also found breathing more labourious.

Sooner than later, though, this started to get better especially with the addition of Mestinon SR in the evenings and mornings, and a plasma exchange here and there. The plasma exchanges work much better for me now than they did pre-op/prednisone, and last much longer. I guess the antibodies are getting lower, and less 'efficient' with the pred. in addition to the exchanges.

Just know that you will get better. It takes time, and some messing around with the meds. a bit, but have faith. At the same time, it's good that you're paying close attention to your symptoms. The choking on liquids has happened to me too. You have to do things very slowly and consciously when you're feeling weak like that, which I know you will. Leaning your head down, with your chin sorta touching your throat helps a lot with the swallowing. It closes off the opening to the windpipe. I also sometimes push on my throat with my fingers, sorta lifting the muscle, when it lags while I'm swallowing. This helps a lot too.

Is your palate weak too (nasal speech)? When that happens to me, that's when eating/drinking becomes very labourious. When things are very difficult, make sure to get to a hospital.