The Big Catch Up Post

I’ve really fallen behind on this blog! It’s partly that I’ve been busy, and partly that I’ve been dealing with a crazy parade of side effects after the first clinical trial treatment. It was really surprising to me since immunotherapy usually has fewer side effects, but not surprising to Dr. Ani for reasons I’ll explain in a few minutes.

About 12 hours after the first treatment, I started having chills. It progressed to a fever, aching in my joints, and sharp stabbing pain in my right side/chest/back and a bit on my left. I knew from my research that these were fairly common side effects to Opdivo and sometimes a good sign–your body is generating an immune response to the drug.

What was surprising is how over the following week, my parade of side effects included:

  • Flu-like symptoms
  • Shortness of breath
  • Fatigue
  • Loss of appetite
  • Nausea
  • Acid reflux flare-up
  • Cough
  • Super itchy rash that spread over my whole body
  • Mouth sores

It wasn’t surprising to Dr. Ani because in phase 1 of the trial, apparently half the patients had a ton of side effects at the starting dose of epacadostat, and had to be on a reduced dose. She said she was surprised they’d gone into phase 2 with that high starting dose again.

The rash was concerning, though. It didn’t follow the patterns of an Opdivo rash, but instead looked (and itched!) like a drug allergy rash. She took me off the trial and put me back onto prednisone at 40mg initially. The goal was to eliminate the side effects–especially the bad rash–and then get me back off prednisone to rejoin the trial.

I still have the rash but it’s slowly improving. As of Tuesday, my blood work looked good so I’m approved to rejoin the trial on Tuesday, 9/13. I’ll be on 100mg of epacadostat twice a day, rather than 300mg. If I can tolerate that dose with reduced side effects, we’ll keep going until the first scan for response (which I think is after three treatments). Hopefully the rash wasn’t a true drug allergy… but the only way to tell is to take the drug again and see what happens.

Rash or no rash, I’m eager to get back onto the trial!


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