Tuesday, May 10, 2011

Now, crashing neutrophils

As I tell my wife, if it's not one thing, it's another. Seriously. I have a new health complaint everyday. Sometimes it's a sore foot. Next day, a painful back. The next, pain in my abdominal nodes. And the next, a headache.

Occasionally, I have a good day. That is a bad thing. If I go through the day, and say to myself, you know, I had a pretty good day! In fact, I feel fine! How nice!

That means I will be in the hospital the next day. No good day goes unpunished for me. I'm serious. This ALWAYS happens. ALWAYS. Without exception. EVER.

I had a good weekend. I felt kind of tired Saturday, but I got the truck out and finally clean out the pile of stuff the gutter guys left when they re-did my gutters. I told them I'd dispose of things if I could get a cheaper price.

Sunday, another good day. Church was nice. By Sunday afternoon, I thought maybe I had crossed the creek. My painful nodes were history. My fever was over and done with. I had lots of energy and got lots done.

Never tempt fate.

The next day, I got a copy of my lab results from Friday. They show 2% neutrophils. That's not good when your WBC is 4.4. Doing the math, that means my absolute neutrophil count is about 100. Way below the 500 cut-off for serious neutropenia. It's at the same level that I had when I was in the hospital with a 105 degree fever. It's tied for the worst I've every had.

I'm off CAL-101, and I think they are trying to ditch me from the trial forever. Stanford wants me to tell them that I've progressed on CAL-101, but I don't know if that's true. I know this latest blood work suggests that my CLL has skyrocketed, but I've been off CAL-101 for almost three weeks.

Listen to your body. If it is telling you that you are doing well, you are in big trouble.

Thursday, May 5, 2011

Off CAL-101 and suffering

Two weeks ago, I went to Stanford for a routine medical appointment. Dr. Coutre was not there, so I saw another doctor.

After the three-hour drive home, I got a message from the clinical trial coordinator that my liver enzymes were elevated, and I must stop taking CAL-101. The coordinator explained that this is not uncommon, and most everyone who has elevated liver enzymes goes back on the drug at a lower dose. (I've been on 150 mg, twice a day.)

Well, it wasn't that simple. My lymph nodes started increasing in size in a couple of days. (CAL-101 works very, very fast in reducing the nodes; it apparently works just as fast in the opposite direction.)

Anyway, by Saturday night, I was in agony. My lymph nodes apparently started pressing on this organ and that. I also spiked a fever. So I went to the ED. They released me after prescribing Levaquin (sp?). By Monday night, I was in poor shape again, and went back to the ED. They did not admit me (yay!!!), and I went home.

I had my liver enzymes tested after one week. The enzymes had not gone down to a normal level.

Meanwhile, two weeks after going off CAL-101, I am very unhappy. I have massive nodes again, I have significant fatigue (starting on Wednesday) even though I am sleeping well for about seven hours a night, which is normal for me. The sleep does not seem to refresh me.

I've faxed the blood work to UCSD, Dr. Kipps' nurse. That was a week ago. Silence.

I did get a call from Dr. Coutre yesterday, which was nice. He wants me to wait several more weeks and then evaluate what has happened to me.

I am very disappointed, of course. My lymph nodes went down fast, and stayed down. I felt great. My blood numbers were OK, and things seemed to be going as I had expected. Now, I am in a bad place.

I think the ideal would be to stay on CAL-101 at a lower dose. I don't know if that will be offered.

So, I'm back in the CLL misery.