Started Acalabrutinib in August and had a couple of headaches over the first week. Called my care team. Tylenol basically stopped the headaches. They never came back. Zero side effects from Obinutuzumab. Today, I completed my first dose of Venetoclax at 400 mg after titrating up for a month. Maybe a little bit of tiredness last week, which also could be due to the pace of weekly four-hour drives to Boston and back for a month. A touch of nausea last week. Was that related? Who knows. Who cares. My blood results and metabolic panels are all normal, this after just fewer than four months. Four. Easy. Months.
I am fortunate, and I’m not alone. Most of the others I know in the trial are also having a relatively easy time of it. I seem to be having the smoothest go of it, that I know of, but I’m younger, at 57, than most, and fit (not to say they’re not). I’m IGVH unmutated, so this trial should provide significant benefit to me in comparison to FCR.
For those new to CLL, don’t be afraid. Find the best CLL specialist you can. Learn. Advocate for yourself. These can be hopeful times. My hope is that we generate great data from this trial—data that advance the state of care for us all. Along the way, I hope to be free of meds, even if only for 5-10 years. What a treat that would be! By then, newer and better treatments will be available. Soldier on, fellow CLL’ers!