I'm in the anti-LAG-3/Opdivo combo trial at Johns Hopkins. Here's a link to it: https://clinicaltrials.gov/ct2/show/NCT01968109
I've had 4 infusions so far. No ill effects, but my lipase is heading upward. It's not what they consider "extremely high" yet, and Dr. Sharfman signed off on my treatment yesterday. But I'm a little concerned because elevated lipase was reported in about 9% of patients in an Opdivo trial, so it seems to be a thing with Opdivo. I don't know what my options might be if I can't continue with Opdivo. We shall see.
As for the thyroid issues, except for a noticeable goiter I've not really had any symptoms. Maybe a very slight tremor in my hands. But nothing else…no weight loss, bulging eyes, etc. In fact, after the endocrinologist first diagnosed me as hyperthyroid, my family doctor, who has been seeing me for over 30 years, said he didn't think I was hyperthyroid. And my T3 and T4 have never been extremely high, even when my TSH was extremely low, which it was for a while after ipi.
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