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.


kellyr78 said...

I hope you are feeling better since you wrote this. If you don't mind me asking, how long have you been in Stage IV CLL? My mother was just diagnosed in Stage IV out of the blue, and I cannot find any good statistics about this type. She is only 63. If you'd rather answer by email, mine is I found your blog when I was trying to look up info about green tea and tumeric as a treatment for CLL.

Thank you,

Barry B. said...

I am feeling better. It is my contention that when going off CAL-101, the lymph nodes don't have the shrinking signal anymore, and they just zoom back to full size in a few days. Most CLL growth in the nodes takes months. This took a few days. It took a while for my innards to adjust with their new, larger, neighbors.

I've had CLL for 12 1/2 years. I suppose I've had stage four disease since 2005.

kellyr78 said...

Thank you for answering me. I glad you are feeling better. I will continue to stop in now and then.

Anonymous said...

I visit your blog once in a while to see how you are doing. So sorry to hear things went south so fast after you quit CAL-101. I hope you recover and some of this stuff fades away over time.

Best wishes,