Failing CAL-101/GS-1101?

I saw Dr. Coutre at Stanford Clinic yesterday, and was dismayed to find out my lymphocyte count has gone up to 20,000.  This is the highest it's been since I started on CAL-101, and may very well be a sign that I am failing the drug.  I think everyone knew this isn't a cure, but I also think that we all hoped I would get a number of years of remission from the drug.  A year and a half doesn't seem that long, in retrospect.

We will follow up with a WBC next month as part of my IVIg.  If there is continued increase in the lymphocyte count, then it is likely I will be pulled from the trial.  That would be a big disappointment, of course, since there is not much out there I would qualify for.  The Bruton's tyrosine kinase inhibitor unfortunately is completely filled, so there would be no room for me.  The other option would be conventional chemotherapy which does not work anymore on me.

So I may be going from a stable situation in which I feel well and am able to live a pretty much normal life to one where CLL is once again front and center.  I know I have done better than many (but not all) and I shouldn't complain, but this indeed is a real blow.

I'll try to stay on the positive side, at least for another month.

I suppose I will go back on the prayer list from my church.  Prayers do help, in my opinion.  I think they were a God-send when I was so sick in the hospital.

Cruise Control

I went down to Stanford last week for my latest appointment with Dr. Coutre.  The lab numbers were not in yet (even though I got there over an hour early!), so I don't know how the lab is going to assess my progress or lack thereof.  (Is it progress if the numbers progress to a worse level, or is it progress if my counts are stable and/or improved.  I vote for the latter.)

From a purely subjective standpoint, I feel fine and am able to do pretty much what I want physically.  I think it has taken me about six months to pretty much fully recover from my hospital stays.  That's a long time, and thinking back, I was pretty much wiped out in January and February.  I couldn't drive, I couldn't make it to the end of the street even with a cane.  Now I am driving to Stanford and elsewhere, I did some roof repairs that necessitated me carrying shingles up the ladder, and ripping off damaged shingles, and even using new plywood to replaced some damaged sections.  (The whole problem started unnoticed some time ago when I lost a single shingle to a wind storm, and didn't notice it.)

My attitude to the lack of numbers from Stanford is that since I've not heard from Dr. Coutre, all's pretty much well.  At least I like to think so.  I see him in a month.  I'll repeat my scans in December or January.

In addition, I'll see Dr. Kipps next month in San Diego.  I'll get to fly the no-frills Southwest, which has the only non-stop from Sacramento to San Diego.  I hope things go well there.  Dr. Kipps is more of a worrier than Dr. Coutre, so I expect a somber analysis from Kipps.  But I will get to pump him on new treatments.  Of course the one trial I'm interested in apart from CAL-101/GS-1101 is a trial educating the T-lymphocytes to attack and destroy CLL cells.  A cure would be very, very nice.  To get back to the business of living without having to worry about my immune system.

Perhaps an impossible dream for me, but one can only hope, can't one?

CAL-101

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.