If It ain't one thing, it's another.

Dave's transfusion went well - no reactions. He actually has a little color in his face and he goes up the stairs at a pretty good clip, with no shortness of breath.

On the other hand . . .

Last night we spent three hours in the SF General Emergency department. Got home about 1am. This time I was the patient. I've been sick for a few days, but Dave was afraid I was getting pneumonia or worse (turned out to be just a garden-variety upper respiratory infection.) When I was getting ready to go to bed for the night, he suddenly became alarmed and called our friend Pam to drive us to the hospital. I haven't been this sick in about 8 or 10 years, but I figured it was just a cold or the flu. Normally I wouldn't have gone to the ER for something like this but I could see that he was terrified and he was likely to stay up all night hovering over me. He relaxed after he heard a couple of doctors say it wasn't pneumonia or a heart attack. While we were waiting for my discharge papers, he looked around and said with a smile, "Steve McQueen was here." (Actually Bullitt was filmed in the older wing.)

So now he's headed off to work, a little late today. I'm in "quarantine," sleeping on the daybed in the studio, so that I don't pass this bug along to the rest of the household.

Weirdly, this trip to SF General happened on a day when the local paper ran a column about how people manage without health insurance. They included a quote from me about using the free clinics and SF General. The waiting rooms at General can be a trial, but I've always had excellent care there. I feel really lucky to be living in San Francisco, with top-notch medical centers and plenty of options for the uninsured.

(Image at top is a view of the Bullitt-era SF General. via)

Short Update

Dave is at the hospital now, getting a couple of units of blood. (His Hematocrit was down to 17 yesterday.) I'm here at home, with the flu, or something like it. He was pretty nervous about getting this transfusion and wanted me to sit with him while he got it, but not only am I feeling really lousy, but I was worried about infecting him and other patients in the infusion clinic. A friend dropped him off at the hospital this morning. His ride home is not firmed up yet, but something will work out. He did amazingly well with so few red blood cells, so I expect him to be feeling great when gets home this afternoon. More later . . .

First Round Done

Other than complete exhaustion, there were no problems with Dave's first infusion of Rituxan. He gets more Fludarabine tomorrow and then next week, if his Hematocrit isn't up to 20, he'll get a transfusion.

Time to Start Rituxan

Dave, heading into Star Photo (616 Irving; 415-681-2445) to get his film developed. He stops by so often, he's on a first name basis with all the guys in there. He's still shooting up a storm, in spite of an anemia so severe that he gets light-headed if he stands up too quickly.

This was a long day at the clinic. As I suspected, his bloodwork yesterday was not good. The anemia was the worst it's ever been. On the other hand, his platelets and lymphs were slightly improved (not nearly enough, but at least they didn't get any worse.)

So it looks like he's stuck with Prednisone therapy for the foreseeable future (to slow the destruction of his red blood cells.) He's starting to get some muscle-wasting, but none of the other nasty side effects have surfaced.

After three months of Chemo, the Fludarabine/Mitoxantrone is really kicking his bone marrow but it's not doing a whole lot to the cancerous lymphocytes, so the new plan is to add Rituxan. Rituxan is a monoclonal antibody which specifically targets mature B Lymphocytes (as opposed to ordinary chemo which kills a lot of "innocent bystander" cells.) This is good news, in my opinion - I was hoping they would try Rituxan soon. But of course, Rituxan has its own sticky wickets, and the first one comes up tomorrow when Dave gets his first dose of Rituxan.

The infusion will take 6 hours (they told him to "pack a lunch.") Rituxan causes fairly serious allergic reactions in a lot of people, so Dave may need to be treated for that. Plus, the Rituxan is expected to kill the lymphocytes pretty quickly and when the dead lymphs start spilling toxins into his bloodstream, he'll be at risk for Tumor Lysis Syndrome.

Once he gets through the first dose, he'll be scheduled for repeat doses once a month, and then every 6 weeks or so, for . . . awhile (not sure how long - no point getting fixated on a long-term schedule, these days.)

But, back to the anemia. Next week Dave is scheduled for a blood transfusion - unless his RBCs manage to rally between now and then.

Blood work today:

WBC - 7.2
RBC - 1.57
Hemaglobin - 6.4
Hematocrit - 18.8
MCV - 120
Platelets - 139
Seg Neuts - 1%
Lymphs - 88%

Auto Immune Hemolytic Anemia

AIHA is the current problem - in addition to the CLL, of course. Dave has had some ups and downs the last few weeks, and he's due to start Chemo again tomorrow. But I'm not convinced that his blood counts are adequate (that he can withstand a round of chemo.) The doctor has been increasing his Prednisone, but based on his appearance, I have a feeling his counts are down again. He had more blood drawn this morning, so tomorrow morning, when we meet with the doctor, we'll know for sure.

Last week's blood work:
WBC - 3.5
RBC - 1.64
Hemaglobin - 6.8
Hematocrit - 20.3
MCV - 124
Platelets - 78
Seg Neuts - 3%
Lymphs - 97%

More About Fatigue

(Dave has been feeling better the last couple of days, and his blood work is improving, too. In fact, he says he's got more energy now than at any time since his diagnosis. )

Chris Dwyer, of CLL Canada wrote this about CLL-related fatigue:

While my life changed drastically after my diagnosis, I did not think I would spend the next four years fighting in court to get disability payments from my government's 'safety net'. A battle I finally lost, due to an "old school" oncologist's statement that the severe fatigue I was experiencing was not linked in any way to CLL. In fact he considered me to be asymptomatic.

Sometime later I took him to task to explain his position and after some excuses he backed down from his position and conceded there may be a link between fatigue and CLL. However the damage had been done in my case.

Later that year, I received a letter from Dr. Michael Keating, a leading CLL researcher at M.D. Anderson, as part of my court appeal. He concluded that CLL fatigue was certainly real for some CLL patients. But it is not fatigue like being tired. Rather the good B-cells in some patients sense that there are immature and malformed B-cells floating around and they set off an alarm to trigger the body's defence mechanisms. Remember how you felt the last time you had the flu or a bad cold? Tired and achy and just wanting to go to bed. Well for some of us with CLL we are 'stuck' in this condition. Finally we have a definite mechanism to explain why some CLL patients suffered from this mind numbing fatigue.