Friday, January 28, 2011

Surprising Results

I took my first dose of CAL-101 on Wednesday at 1:15 pm. I then had my rituximab infusion, which I covered in my previous post.

I didn't write yesterday about my surprising results from CAL-101. Thursday morning, when I woke up, I noticed my abdomen seemed noticeably smaller. Hmmm, I thought. This seems very sudden of a response. Dr. Coutre told me that I would experience results quickly, within the first week, but in 18 hours? This seems on par with flavopiridol, which has a tremendously fast and potent kill effect, so much so that one is hospitalized to keep an eye on one's potassium level, so it doesn't get out of hand and destroy one's kidneys (one of the first patients on flavopiridol (Alvocidib) died from acute renal failure in Dr. Byrd's study).

I'm not sure what is going on in my potassium level, but I am staying well hydrated just to be on the safe side. And I've not heard of anyone dying so far on a CAL-101 study, so that's reassuring. (However, one must realize this is a clinical trial, and sometimes significant side effects are found long after the drug has been used in patients.)

This morning, my gut is smaller still. Amazing. I would never have believed it. It's like magic. It's like I've had liposuction on my nodes.

I must say that my other enlarged nodes are not following quite the same path. Perhaps it works on massive nodes more than slightly enlarged nodes.

Of course, time will tell and I know this is not a cure. But I wonder if CAL-101 could be used in emergency situations when lymph nodes get out of control and start impinging upon organs.

I have recovered pretty much from the unpleasantness of Wednesday's rituximab infusion. I am constipated, though, something that rituximab does to me, that they don't tell you about. (In my first go-around with rituximab, I was so constipated I thought I might be plugged up forever. It was terrible. I used a stool softener this time, though obviously not quite enough.)

Well, I must say that CAL-101 works unlike what I expected. And it's illustrated that much of my gut was enlarged lymph nodes, though they have never gotten as bad as they were before flavopiridol. Flavopiridol was what I needed when I took it a year and a half ago. It was more troublesome than CAL-101 is so far (we will see what the future brings), but I was pretty bad off. And the fact that Dr. Kipps had that trial was fantastic.

Thursday, January 27, 2011


I have made the cut, I guess you could call it; I'm now in the Stanford CAL-101 trial, combined with rituximab.

This is a trial of weekly rituximab infusions, for eight weeks, combined with 150 mg of CAL-101 twice a day. The CAL tablets come in a prescription bottle, with a seal and, yes, even cotton at the top of the bottle. The nurse said that they have a drug company bottle the CAL for Calistoga.

I went in for imaging on Tuesday and Wednesday of this week; I had the CAL that afternoon, followed by 375 mg/m2 (the usual dose). I've had seven rituximab infusions before, with no problems.

This time was different. I don't know if it was the long day (up at 5:30 to get the MRI by 7:00), the MRI contrast (I was in that darn machine for over an hour), the CAL, or what, but at the 7/8 mark, I started to get nauseated. Yep, I threw up my day's gorp trail mix, bananas, and Gatorade is a disgusting mix. Two sets of multiple vomiting episodes. The first I didn't quite make it to the bathroom. I tried to hold it, but dragging a IV pole along for the ride didn't help. (I'm sorry, Ms. Housekeeper. I really am.)

I felt pretty rotten. I also got a bit chilled, but my blood pressure and temperature held at the normal level. I tried to tell the nurse practitioner this, but she was very Nurse Ratchet about the whole thing and stopped the infusion. I told her I didn't feel good and wanted to go home (home being a three hour drive). We compromised with her re-starting the infusion, and me promising to stay the night (at another $112) in super-expensive Palo Alto. (BTW, near Stanford, the lodging is even more expensive than La Jolla!)

The nurses made the reservation for me, which was really nice. I'm sure my green complexion motivated them, and since it was after 8 pm, they wanted to go home as badly as I did.

I got to the motel, locked the door, turned the heater on full blast, and promptly fell into a very deep sleep for five hours. I even fell asleep before I could floss and brush my teeth.

I felt much better when I awoke, though I had a splitting headache. That vanished by late morning. I putted around the motel (actually I watched an episode of The Sopranos. I've never seen the program, because I'm very put off by violence). This was on USA or some other network, so some of the violence was cut out. Still more violent than I wanted, so I changed the channel.

It's late evening, and I feel OK. However, with rituximab, I now need to be extra careful about avoiding infection. My numbers have been OK the past six months or so, and I've gotten out of the habit of being really vigilant. That has to change. Bummer.

Saturday, January 15, 2011

Intermittent Problems

I've been doing OK the last few months, but I've noted an increasing sense of fullness in my upper abdomen. I sense the CLL is growing again in my gut. Not good. Plus I've had an occasional problem with nausea and other gut-related maladies (indigestion, GERD, and diarrhea).

I see Dr. Kipps later this month. He indicated to me in September that he wanted to keep a close eye on the lymph nodes, but concluded that I didn't need treatment at that point. My last appointment was in late November, and he felt the same way.

Options include Mozobil plus rituximab, CAL-101 plus rituximab, or revlimid with rituximab. We will see.

Oh, by the way, I've had my 17th bone marrow biopsy. Even with percocet, it was still painful. I wish things were less painful. Interestingly, my blood pressure went from 118/60 to 135/70 just before the procedure. Not surprising, since I've had lots of pain before.

Saturday, January 1, 2011

Another New Year

As one gets older, it seems that the passing of the year goes by faster and faster, doesn't it? My wife and I stayed home. The weather being wet and cold, the noise level for the celebration in the neighborhood was a bit subdued this year, though that isn't anything I'm complaining about.

I have been having some increase in symptoms the last week. I've had a couple of days of feeling pretty full, which must mean the nodes are growing again. So, nine months after the end of my eight months of treatment with flavopiridol, I am going to need more treatment.

I did go to Stanford and met with Dr. Coutre regarding a CAL-101 trial, this time with rituximab. That was in September. One concern I had was having a CT scan as part of the trial, which I won't do unless I'm in immediate danger of dying. He assured me that he could substitute an MRI, which is less dangerous for the patient.

Well, since then I did sign up for the trail, but the trial coordinator, Michelle, said the MRI is off the table. She did want me to do the three-hour drive to meet with Dr. Coutre again, but I told her I'd like to avoid that if possible. I was down there just a couple of months ago.

She was inflexible, and said she talked with Dr. Coutre, and that he has changed his mind, or perhaps the drug company is now inflexible about the scanning. Too bad. I told her to give up my space on the trial to someone who doesn't mind being irradiated with a lifetime's worth of radiation.

So, I have to resign myself to not trying one of the new 'great' drugs. And of course it will be another four or five years before the drug is approved, if it is.

I wish I had not placed my hopes in CAL-101. (Besides, the response rate is only about 50% anyway, so it may not have even worked. And that I would have had a series of CT scans?)