Saturday, September 1, 2012

Status at the End of Six Months of Ibrutinib

I had my six-month bone marrow biopsy on August 8. Janet Valdez at NIH did her usual expert job---no complaints whatsoever. Some people fear bone marrow biopsies, but this one, like the two I had previously, was no more painful than what a dentist does.

Dr. Farooqui at NIH e-mailed me to say that my CLL bone marrow infiltration (if that is the right terminology) had been reduced from pre-trial level of 95% to a current level of 70%. I don't know whether to be overjoyed or disappointed. All I know is I was a wreck with severely puffed-up lymph nodes in my face and neck before I started and now I am back to a normal, reasonably lean appearance and feeling pretty darned good, taking 15-mile bike rides fairly regularly (well, until I got back from vacation at Cape Breton---where the sea food was fine and the fiddle music finer---but that's another story).

My blood test numbers continue to progress slowly toward the normal range, except for my white blood count, which (odd to me) has slowly inched back up each month for the past three tests and jumped up fairly significantly on the August 8 test. Nobody (except) me seems to have an opinion as to why. Maybe the Ibrutinib is still pushing white blood cells out of the lymph nodes and bone marrow? Maybe it's from my body fighting a chronic sinus infection? (Still, on September 1).  Maybe from a bad cut on my foot in late July on Cape Cod from an oyster shell? I don't know, but I am not worried (yet).

Side effects? Still absolutely none, ever. I do have very sore shoulder sockets and a similar stiffness / pain across the base of my skull, as well as severe leg cramps from time to time. But I had all that before I started the trial. That could be tendinnitis from the antibiotic for the sinus infection (at least that's what the warning
label on the antibiotic bottle said).

I am VERY grateful for the relief (not to mention hope) brought to my life by this experimental drug. But lately I have had this nagging thought: Is it having any beneficial effect on my immune system? After all, pneumonia is what kills CLL patients. Blood test numbers that track my immune system (immunoglobulins IgA, IgM, IgG, IgD, and IgM, to be precise) remain low, seemingly unaffected by the experimental drug.

Anecdotal reports so far from some other "human lab rats" on this and other Ibrutinib trials seem to show the same lack of improvement in immune system. 

Even so, my life is far better now than before I started this trial.

I will be very interested to see what the numbers are in November, when I next visit NIH.