Saturday, June 28, 2008

The Ups and Downs of Gene Therapy

I saw Dr. Kipps on June 19, 2008. I had an excellent week the week of June 7th. I had lots of energy and got a lot done. Not quite as good this past week, but not bad.

My WBC has unexpectedly taken a turn down, which of course is good. I don't have the exact numbers, but they were up around 60,000, and have now dropped down to the 30,000 range. This is a pretty good drop. Dr. Kipps says that isn't unexpected after the gene therapy, and even after the counts have gone up the past three weeks.

To re-cap, I had the ISF35, inter-nodal injection on May 5th. I was very sick, but recovered fairly well after a couple of days, though I waited until May 12 to go back to work to be on the safe side. My counts dropped very nicely the next two weeks, but started heading upwards the third week, so I was off the trial (though there were no other treatments scheduled anyway, since this was a one-shot deal). The next appointment in early June saw my counts go up even higher. So, we started talking about FCR or FCR+lumiliximab (CD23 antibody). However, by June 19th, the counts dropped. So, there may have been a somewhat delayed action of my immune system? No one knows.

I found out that there is a FCR+L trial in Sacramento at UC Davis, through Dr. Tuscano. It would certainly be much nicer not to have to travel to San Diego and spend the money on flights and hotel rooms, instead staying here in SacTown. I did have an appointment with UC Davis on Monday, June 23 to check into the trial. I'm not sure exactly what to do right now.

I'm thinking of having another CBC (complete blood count) to see where my WBC are now. I must say that my nodes in my abdomen aren't shrinking, and this is an area of proliferation. I suppose a bone marrow biopsy would be a good idea to see what is going on as well. The danger is waiting too long for treatment; the danger is also treating if another treatment is still working, and doing something that isn't necessary right now.

However, Drs. Kipps, Castro and Weirda all think FCR or FCR+L are probably a good idea right now.

And then there is the problem with the huge radiation dose from multiple CT scans; of the neck, thorax, and abdomen. It is about 500 times the background radiation. Of course, with my probably limited lifespan, it may be that I just won't have time for a new cancer to begin. However, it still is of concern to me, if for no other reason than an MRI would be just as good.

So, we are in limbo now.

On a personal note, I noticed one of our dogs had a cyst-like lump on his side that was bleeding. This was on Thursday. We arranged for surgery yesterday, Friday. Sparky is out of surgery and doing well this Saturday. If he holds, we will bring him home tonight. Poor guy is an older gentleman of about 15. He is a funny dog who loves to be with the family.

Wednesday, June 18, 2008

A hot day in Sacramento, and I'm cranky

I get cranky and out-of-sorts when it gets above 100. The A/C is out at work (they swear it is working (sigh) but I've attached a thin piece of paper to the vent, and this paper moves like crazy when air is coming out. The paper is dead, not moving. There is no A/C) so I've been hot all day. I got a lot of work done today, but once I got to the shop this evening, working out in the garage, it's been terrible.

I go to San Diego to see Kipps tomorrow. He's been out of town doing the presentation and hob-knobbing bit again, so he is doubling up on clinic days. I'm sure he is tired from his trip and seeing so many patients. His patient load is growing more and more, I think.

For the first time, I'm worried about my treatment. I've failed two treatments so far, and the FCR plus lumiliximab just seems dangerous to me. This is real chemo with nasty drugs that cause mutations in normal and CLL cells.

I don't have anything to base this on, but I'm usually accurate in my prognostic dreams and feelings. I'm not happy about feeling worried. But I suppose I have to do something for my growing CLL problem, and they don't have anything good to offer me. We are down to the second and third tier drugs that have major side effects.

And, Dr. Castro two weeks ago said I should be thinking of moving to a transplant. Dr. Weirda just about promised me three years of remission with FCR, but obviously UCSD doesn't think I'll last that long.

Worrisome. But we all die sometime. I'm having that lesson drummed into me like there is no tomorrow (bad choice of words?).