Intermittent Problems

I've been doing OK the last few months, but I've noted an increasing sense of fullness in my upper abdomen. I sense the CLL is growing again in my gut. Not good. Plus I've had an occasional problem with nausea and other gut-related maladies (indigestion, GERD, and diarrhea).

I see Dr. Kipps later this month. He indicated to me in September that he wanted to keep a close eye on the lymph nodes, but concluded that I didn't need treatment at that point. My last appointment was in late November, and he felt the same way.

Options include Mozobil plus rituximab, CAL-101 plus rituximab, or revlimid with rituximab. We will see.

Oh, by the way, I've had my 17th bone marrow biopsy. Even with percocet, it was still painful. I wish things were less painful. Interestingly, my blood pressure went from 118/60 to 135/70 just before the procedure. Not surprising, since I've had lots of pain before.

The latest

Saw Dr. Kipps on Tuesdays, the only day he pretty much sees patients. I had some CLL friends in San Diego who were very nice and ferried me around a bit, picked me up from the Cancer Center and helped me get around. Also, they took me out to dinner at a place called Milton's. It's a Jewish-style restaurant in La Jolla. It was very good; the pastrami was excellent. I had a soda called Dr. Jones (I think) and it's apparently a NY classic that you just can't get many places. It was good and made me feel a bit of a connection to NY, which I've been to exactly one time (to see an herbalist who cured one man of CLL, though no one else, to my knowledge).

Dr. Kipps is worried about me, since my counts are still in the tank. He suspects something else is going on. He wants me to start treatment again, giving me four different trial consent documents. Combined with re-doing flavopiridol or Cal-101 at Stanford, that makes six different protocols. That's if my beaten-up marrow has not transformed. He seemed pretty worried, and gave me a hug.

The bone marrow biopsy was pretty painful, even with the percocet I insist upon. (That was a problem in itself; Dr. Kipps apparently forgot to send the prescription over, so his nurse had to track down this busy man, and get him to write a script.)

So I am now waiting and worrying over what this latest biopsy will show. He said my last biopsy in May was fairly normal, and he doesn't understand why my counts are so terribly low (especially the white blood count) when the marrow looks OK.

There may be something else going on...

Waiting for BMB Results

I had another bone marrow biopsy last Wednesday, March 25. I can't count how many I've had, perhaps nine? For some reason, they've gotten increasingly painful. When I had one at MD Anderson, they told me I needed some sort of pain-killer, so that's what I asked for this time at UC San Diego. I got a prescription the day before from Dr. Kipps. It worked pretty well, I had percocet. They told me to take it when I got to the clinic, but I worked out that the maximum pain-killing aspect of the drug was at about one hour. That will be useful information if I ever have a BMB again.

I don't have results. Dr. Kipps has held off with any thoughts of other treatment until we get the results. I would have thought I would have heard about the results by now; perhaps he just doesn't want to give bad news?

I've had somewhat of a hard time dealing with my failure on FCR. My blood numbers are OK, a little low, but OK. However, the percentage of the white blood count that are lymphocytes are going up, and the percentage that are neutrophils are going down, obviously a poor sign.

He mentioned getting a Neulasta shot on Wednesday, but I forgot about it and the physician's assistant also apparently forgot about it. I have a call into Sheila Hoff, but have not heard back from her. I would I guess (now) get the shot in Sacramento, since it would be ludicrous to fly back down there for a shot.

I wish I had remembered, not that they shouldn't have arranged it themselves. Failure all around.