Brain Tumor

Am I Allergic to My Chemotherapy?

We got back last night from an overnight jaunt to St. Louis, where I met with an allergist to try and determine whether or not I have an allergy to Temodar, the chemo pill prescribed by my oncologist. To sum up how I got here, in case this is news or you’re fuzzy on the details:

  • In March and April, I took Temodar simultaneously while completing radiation at a dose of 140 mg. Those 5+ weeks were pretty okay. I had some side effects, but nothing anywhere near as bad I had been bracing myself for.
  • The day after that round of treatment ended, I broke out in what I thought was THE WORST RASH IN HUMAN HISTORY. A dermatologist was seen. Creams and antihistamines were prescribed. I was miserable for a few days, but it got better.
  • Radiation was officially over at this point, and chemotherapy and I were on a break for a couple of weeks. The plan was for me to start up the once-a-month-for-five-days-in-a-row chemo regimen on May 15. The dosage would be much higher: 320 mg first thing in the morning after I’d take my precautionary Zofran.
  • I took that first 320-mg dose, and four hours later the apocalypse started. My doctor put my treatment on hold and recommended I see an allergist.
allergy scratch test for temodar
Literally nothing to see here. 

To my great relief, the allergist did not order me to swallow a Temodar pill and watch to see what happened. She only ordered a scratch test with serum made at a couple of different concentrations.

“If we get a positive reaction, that will certainly tell us something,” she said. “However, if we get a negative. Well, that doesn’t really tell us anything. There isn’t a whole lot of literature on this.”

There was no reaction, but based on the symptoms I’d reported and some lab work I’d had done to investigate whether DRESS syndrome was a potential culprit, she devised a basic plan of attack.

Her first choice for me would be to make a switch to a new chemo drug, if a suitable alternative is available. If not, she’d like to try desensitizing me to the Temodar so that I can continue with treatment and not lose progress on shrinking the fucker. (She did not call my tumor a fucker.)

Desensitizing would involve me taking micro doses over a longer period of time. They’d keep me under observation and monitor me for eosinophilia until they figure out what I can handle.

So my allergist and my oncologist are going to have a chat about next steps. In the meantime, I’m just holding tight and enjoying some relatively decent days without chemo.

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