Still Waiting

I'm waiting for approval of my MRI imaging studies before I can enter the FCR+lumiliximab trial at UC Davis. The trial coordinator is Dr. Tuscano, who was nice enough to speak before the Sacramento CLL patient's group in 2006. He has been working on his own antibody, but I've not heard whether anything will come of it. It looks to be a less than rousing success, but the delays may be due to funding or other administrative problem.

So I'm in a holding pattern, in more ways than one.

One development is that I'm going down to UCSD to see either Dr. Kipps or Dr. Castro. We will see what is happening with my run-away CLL. I am less than happy with the skyrocketing counts that are not, so far, really apparent except in my large abdominal nodes. I don't feel any changes, still working full time and in the evenings seven days a week. Haven't been back in the mountains since I'm now anemic and I don't want to give myself a heart attack by hiking. Energy level has been dropping, but I'm sleeping fairly normally.

Lumiliximab is a CD23 antibody. CD23 is not expected to be a slam-bang MoAB like rituximab for the simple reason it doesn't seem to has as much killing power.

The most recent study and the reason I think Dr. Kipps has recommended this study to me is that the complete remission rate is almost 50% in previously treated patients, which is a very good result. Overall response rate is 95%.

There are two arms to the study, and you don't know what you are getting into before you sign up. You do know once the treatment is underway, so I will get at least one FCR course if I am accepted into the trial. I have more negatives (low platelets, etc.) than I did before trial number one and two. The more things wrong you have with you, the less likely they will choose you to be in their sample. They do want a success, and some folks have been accused of 'cherry-picking' patients that they think will do well for a particular trial.

It's such a game; a game with deadly consequences for the patient, at least.

I saw an oncologist at UC Davis regarding the FCR+Lumiliximab trial (a word she cannot pronounce accurately). This is the same trial which was offered (recommended?) to me by Dr. Kipps. However, Dr. Hamblin calls this trial just a 'marketing scheme,' a phrase that I don't understand. I'll have to write him and ask him to explain.

I don't want to use fludarabine, of course, since it is linked to significant T cell suppression, secondary malignancies, premature death and a whole host of other problems. Once you are refractory to fludarabine (and you will become refractory), then they are no real options left for you; make sure your affairs are in order!

I was more interested in the lumiliximab trial (which is a randomized phase II trial, somewhat rare) as offered by UCD over that of UCSD, since the trial at UCD offers the option of MRIs instead of CT scans. Funny that the same company would have different protocols for different institutions. I did e-mail the company complaining that MRIs would be just as effective as CT scans at tracking the disease. The company MD who replied to me said it would be up to the trial administrator. However, the written protocol is different for the two institutions.

I'll keep this blog posted as to what happens.

Takin' a break

I'm obviously informal since I am using an apostrophe instead of a 'g' in taking!

The weather has vastly improved. Last week was what Sacramento is famous for, hot weather! And it was hot, hot, hot! We topped out at 109 or 110, depending on where in the Sacramento region you are.

I bought a window air conditioner for the laundry room, for our semi-feral cat Mrs. Chippy. It was so terribly hot in the garage (the laundry room is the breezeway, sort of, between the garage and the house. It worked great! For $62, it was a bargain and it lowered the temperature into the 80s, a big relief from the 110 degrees it was probably in the garage. I'm going to keep the A/C there until summer is over in two months, and then put it away until next year.

On the topic: I've decided to take a break from CLL. I know that sounds odd, but I've had treatment in September, October and November 2006, and then again in May, '08. I had a partial remission from the HDMP+HDR (high dose rituximab), but relapsed quickly. I have terrible markers and no one, including me, was expecting me to last 10 years with this form of CLL. (It will be 10 years on October 1.)

My last blood numbers on June 19 showed a nice drop from my rapidly escalating WBC, and I feel pretty good, so, why not? I did see the local oncologist at UC Davis regarding the lumiliximab (randomized to 1/2 of the participants) trial. They remarked that they thought it was odd I'd be undergoing treatment when my performance level is '0' (zero, the lower number the better), working full-time, etc. So I took that as sort of a sign, maybe from God, to ignore the disease for a month. I'll have my next blood test on July 19, which is coming up fast. We will decide what to do then.

In the meantime, I am chugging away. My wife, who has severe asthma, is having trouble with our high temperatures and smoky conditions. Visibilities have been on the order of a mile or so. Terrible. You can see the smoke in the air, the sun 'sets' about 4 pm, and there is actually ash falling nearby. It has been a horrible year.

Note the sad loss of P.C., Chaya's husband, Tony Snow and others from cancer. This disease seems to take the best and the brightest, doesn't it? I don't have survivor's guilt, because I will most likely die from CLL unless something else gets me first, and it could happen in a hour, a day, or a week from now.

So, a short break from researching CLL, reading CLL blogs, thinking about the physiological nature of the disease, etc., is in order for me, and, I might add, richly deserved, at least in my opinion!