The start of treatment was delayed two weeks because of a cold. Colds, as some of you know, can be a particular challenge to CLLers since we have degraded immune systems with few functional B lymphocytes, lowered immunoglobulins, and too many CLL clones gumming up the finely-tuned works.
Sure enough, my lymph nodes grew as the clones reproduced in a frenzy, trying vainly to fulfill their intended function. Somehow I managed to get over the worst of the cold in a couple of days, after which it dragged on at a low level, but not quite low enough to safely begin treatment.
Once I had recovered, things got underway last Wednesday with the opening dose of ofatumumab, aka Arzerra. GlaxoSmithKline starts you out with a baby dose of the stuff, 300 mg over six hours, just to make sure you don't have any serious reactions. The infusion rate begins at 12 mg an hour and is gradually increased every half hour to 200 mg. Premeds consisted of two Tylenol, 50 mg of IV Benadryl, and 100 mg of IV hydrocortisone, aka Solu-Cortef.
Absolutely nothing happened, other than the Benadryl putting me into a rather comatose state. Being a fully-humanized monoclonal antibody, ofatumumab may cause less of an allergic reaction than its cousin, the mouse juice rituximab. I have often had mild infusion reactions to the latter -- flushed face, tightening of the throat, and the like -- usually during the first infusion of a cycle. With the ofatumumab they may as well have been giving me water. That doesn't mean no one ever gets a reaction; it can and does happen, it just didn't happen to me.
The one thing I did notice is some mild redness on my neck (below the ears) where the lymph nodes are inflamed. Back when Rituxan was working pretty well on me, I used to get the same thing. This seems to me to be more a consequence of the drug working than an infusion reaction, especially since I have only noticed it toward the end of an infusion or after it is done. Other than that, I can't report any noticeable effects of the Arzerra, but at 300 mg, I wouldn't expect to see much progress.
Next week I'll be given the customary 1000 mg dose, along with more of the dreaded Benadryl. The day after I start the lenalidomide (Revlimid), 10 mg daily. In other words, Houston, we will have lift off.
Reflections on year of both great progress and great sadness in the CLL world - Happy New Year. This year we lost 3 members of our local Orange County CLL Society support group, and I lost other 3 other dear CLL and CAR-T friends that ...
2 weeks ago