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.
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.
She should have called your tumor a fucker. Always tell the truth, doctor.
LOL! If she had, she would be my favorite.
Did you look into metronomic temodar? Then you wouldn’t have to be desensitized every month for monthly temodar.
Doctor switched me to gleostine instead.