Saturday, June 08, 2019

Recommendation

After 5 weeks of waiting, I finally got a treatment plan from Hopkins. I guess it was only 2.5 weeks of waiting to hear from Hopkins, plus the 2.5 weeks to get in.

Anyway, they invited me to come in a see if I qualify for their immunotherapy clinical trial. That was their best guess to treat me. They also said my best shot for a cure was radiation, but (paraphrased) I’ll be back in 15 years with a solid tumor.

I think I’ll go in next week for the testing to see if I fully qualify, but I’m really torn. The immunotherapy seems really promising, and it fairly well tolerated. Until it isn’t, and then it goes south very fast and badly. Like near fatal colitis or pneumonia. And it’s hard to predict. It’s also up to 34 3-week cycles. So up to two years!

I’ve done so much research on the other plan (brentuximab + Bendamustine). It was a solid plan, with excellent response rate, and minimal side effects. The Hopkins guy didn’t like that one, but he never said why. That would have been done by October (18 vs 102 weeks). I was ready to get that going weeks ago.

I’ve spent today reading everything I can on Nivolumab and Ipilimumab, and it’s not really reassuring me. Especially Ipilimumab. Scary stuff. It’s mostly used for melanoma.

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