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.