Wednesday, December 26, 2007

The New Plan

Xmas Sunrise over San Francisco

Well, we finally had a sit-down meeting with the doctor today. Dave was originally scheduled to receive his eighth infusion of Rituxan in the outpatient clinic today, but Monday's bloodwork showed an ominous drop in his Hematocrit, Neutrophils, Lymphocytes and Platelets. The Neutrophils were the most alarming - down to 228 in absolute numbers. As soon as the results came (via automatic email from the Lab) yesterday afternoon, Dave became agitated and by evening he was having a real meltdown. We hadn't heard from the doctor in three weeks, in spite of Dave's repeated emails and phone calls expressing his concern and asking to for more information (like, what's going on and what's the plan?) Dave was scheduled to meet with the doctor today, after the Rituxan infusion, so we figured our questions would have to wait until then.

This morning, as we were getting dressed to go to the hospital, Dave got a call from the clinic saying that there had been a change of plans. He was supposed to come in earlier, to get a Bone Marrow Biopsy, then meet with the doctor, and then the Rituxan infusion, maybe - the doctor would discuss it with him. Dave had been relentlessly mulling over the possible scenarios for the last 24 hours, and this just added to the speculation. But as we wolfed down some breakfast, Dave concluded that the doctor was sure to cancel the Rituxan infusion, so he decided we didn't need to pack any lunches for the day. He was nervous about the Bone Marrow Biopsy, but figured it was for the best, because then maybe the doctor would tell us something and at least he wouldn't have to sit in the infusion chair for 3 hours, getting Rituxan.

When we got to the Oncology Clinic, we didn't have to wait long, and Dave was called in soon after we arrived. But instead of taking him to the procedure room (where they do the biopsies) we were ushered into the doctor's exam room. We waited there a long time (or it seemed that way to us.) When the doctor came in, she asked him how he's been doing since she saw him last month - he's actually been feeling pretty good, and the only changes have been some mild night sweats during the last few days. Then Dave asked her what was going on with his dropping blood counts and she said that the bone marrow was depressed and that she didn't really know why. It could be the Rituxan, but maybe not. She had changed her mind and decided against the Bone Marrow Biopsy because it wouldn't really show much, with his marrow so depressed. But she wanted to go ahead with the Rituxan infusion for today. Dave wanted to know why. She said she wanted to go after those last few cancers cells lurking around in his body. Dave said he was worried about the Neutrophils going down. She said she was worried about it too, in fact everyone at the clinic was worried about him. I wanted to know how much lower Dave's counts could safely go. At that point, she said that he didn't have to have the Rituxan if he didn't want to - it was up to him. She said it could go either way, and she would be OK with whichever he decided. He asked her again about the Rituxan and what it was doing. Then he looked at me. I agreed that it was tempting to want to get those last cancer cells, but I also was concerned about his Neutropenia - I told him it was his decision. He said that he wanted to skip the Rituxan for today (later he told me that he had already made up his mind that he didn't want any more Rituxan and that he was relieved that she made it easy for him to refuse it.)

When she asked if we had any more questions, I wanted to know how we could get in touch with her. She gave us a new phone number - her case manager - and told us to call that number when we had questions.

The latest new plan: Give Dave's bone marrow a "rest." Check it with a bone marrow biopsy at the end of January. No more weekly blood draws - check it in two weeks, mainly to make sure the Hematocrit isn't falling too fast. Keep taking infection-avoidance precautions.

Wednesday, December 19, 2007


Dave's treatment continues . . . Rituxan infusions, weekly - he's getting infusion #3(of 6) as we speak. Plus he had 4 infusions in the months prior, for a total of 7 Rituxan infusions, so far. Neutrophils are improving slightly, but still waaaaaaay too low. He's feeling pretty good, in spite of everything. The doctor still has not responded to Dave's request for information.

Wednesday, December 12, 2007

Keeping it simple

Dave was scheduled for more Rituxan today, but he didn't go in for it. His Absolute Neutrophil count is 225 (last week was 429) and his Absolute Lymphocyte count is 630 (last week was 605.) He left messages for his doctor yesterday morning and again this morning expressing concern about his low white counts, but no one returned his calls. He also called the Oncology Clinic this morning and left a message saying he didn't want more treatment until he'd talked to someone. But we didn't hear anything until someone called to ask why he wasn't at his appointment.

A that point, the explanations given for his low white counts were, "don't know" and "it's the disease process." Nevertheless, Dave was strongly encouraged to come in for another Rituxan treatment, because "the doctor wants you to have it" and "it will help cure the disease and then the Neutrophils will recover." Right. This kind of vague, bullshit, baby-talk drives me absolutely nuts. It's taking all of my self control right now to not turn into a raving bitch.

Deep breath.

So now, we're headed back to the hospital tomorrow for another Rituxan treatment. Stay tuned.

Wednesday, December 5, 2007

Mystery of the Disappearing White Cells

Laurie I Love you, Frank

Well, Dave had his Rituxin today, even though his White Blood Count was still down, and in fact seems to be dropping for some mysterious reason. I scoured the internet and asked friends in the medical field ('tho not anyone in the CLL specialty) and I wasn't able to come up with any explanations. I asked Dave's doctor today, and she said, "I can't explain it."

His Neutrophils and Platelets both took big hits this past week (his absolute Neutrophil count is only 429, platelets down about 20 per cent but still normal at 169.) The Lymphocytes are down slightly, to 605. This is in spite of the fact that he has had no Fludarabine since September 19th and he hasn't had Rituxin since November 7th.

Strangely, his Red Blood Cells are improving - his Hematocrit is up to 28.5, so it's not like his bone marrow is giving up the ghost.

His doctor wants to go ahead with the next round of Rituxan, which means he'll be going in once a week for the next 6 weeks for more infusions. And they said to stop the Prednisone (he's only been getting 15mg/week for the last few weeks.)

He's still getting his blood drawn every week, so we await next week's results with some anxiety . . . or at least, I do (I hate not knowing what's going on.) Dave is confident that things are going just fine.