I’ve waited to report on last week’s NIH visit until I got the preliminary results on my bone marrow biopsy. They’re just in, from Dr. F. so here are the highlights. I’ve reached the two-month point on the clinical trial, so there was more testing than usual. The CT scan confirmed what we had already been able to detect from the easy to feel areas, that all the enlarged lymph nodes were significantly reduced in size. I learned that a scan I’d had in March showed that my spleen was 19 cm. in size, but was now down to 15 cm. What’s the normal size of an adult spleen? It’s about 10-12 cm. My CBC also showed improvement. My last few WBC’s dropped from 85k, to 65k or so, then jumped to 101k (while I was on Prednisone due to my inflammatory response to Ibrutinib), but it was now down to 45k. Hemoglobin up to 11.4, helping me to feel much better. Platelets well within normal range, at 191k! I was unable to get my C-reactive protein level, but I’m pretty sure it’s still elevated, because I still have some aches and pains.
The bone marrow biopsy was the only fly in the ointment. I was told the PA would be doing it, and that she was very good at them. So I was much more relaxed this time. Until, oh no!, I soon discovered that Dr. F.’s BMB’s are best! Pass the Kleenex, nuff said. Not only was the BMB not painless, but the results were not what I hoped for either. Maybe next time. But I don’t have to think about that until Dec. Here is Dr. Farooqui’s quick email:
When we talk about BMBx results we mention two things. One is cellularity which is basically all the cells that make up the bone marrow. Normally cellularity ranges from 50-60% in healthy adults. In your case prior to treatment your cellularity was 95%, and of that 95% the CLL comprised 90% of it. The BMBx 2 months later showed a cellularity of 90%, but the report did not comment on the CLL portion of it. I haven't had a chance to review it myself, but will do that next week. But basically overall there was not that much change. I think this drug works mainly on the lymph nodes and blood, and the bone marrow lags behind quite a bit.
Brianna and I stayed at the Marriott Residence Inn this time, and liked it most out of the three places we’ve tried. It has a rooftop swimming pool, and I just had to check out the famous pool of Bethesda! I couldn’t jump in as I’d like, because I had to keep the BMB site dry. But after Brianna gave me a tour of the area, we found we were locked out of the hotel! Would we miss breakfast? Would we miss my appointments? No. We called the front desk and they sent someone up who quickly set us free. I will never be free of the debt of gratitude I owe to the beautiful Brianna for going with me to the NIH all 5 times this summer. This is her last trip with me, and it has been fun every time! She and Jason have some very exciting adventures just ahead, and I wish them all the best on their move to Seattle, where Jason has been recruited to work for Amazon.com.
