Thursday, July 31, 2008

CLL Rampaging Out of Control!

Since my last post, all hell has broken loose, and my CLL is out of control.

My last blood test on June 19 had my WBC declining by 20k or so. I expected at least only a modest rise, if any, based on how I felt.


My numbers have gone sky-high, from about 30k to over 176k, in one month. I guess this qualifies as doubling in less than six months.

Thank goodness for blood tests, because I wouldn't have known I was going downhill so fast without them.

We've decided to treat as soon as possible, with something. We've decided that I should get a blood retest this week. I've been putting it off because, well, ignorance is bliss??? Isn't it???

With all the new knowledge and the prospects of better treatments in the next few years, why is this going so quickly downhill for me? That's just the way it is.

If CLL has taught me anything, it has taught me that we are all dying, some of us have it thrust in our faces every day, others only know it as an abstract thing. I used to confront this like the rest of the world, as a distant possibility; not now.


We don't know if it's Richter's transformation, rapidly progressing CLL, a new cancer, or something else.

My only 'B' symptoms is that I'm tiring a bit earlier than I was a few weeks/months ago.

I'm not buying extra supplies that I might need 'someday'. That's a waste of money.

Wednesday, July 23, 2008

Vacation from CLL

I last saw Dr. Kipps on June 19, 2008. I cancelled the July 3 appointment with Dr. Castro because it relates to the ISG-35 internode injection trial which I failed in late May. (I went from 30k to 60k in three weeks. Bummer.)

I've had several major issues with my wife. She has asthma and the hot and smoky weather in Sacramento (we always have very hot Julys, but not smoky ones) has affected her in a major way. I've shifted my focus from my CLL to her asthma.

So, the last week, I've been feeling so good I decided to cancel the July 24 appointment with Dr. Castro (also on the failed clinical trial. I thought blood work here in Sacramento would give them a picture of what is going on with me, without having to fly down to San Diego, and spending the full day down there. I hate that!

I decided I would take a slight vacation from my CLL, in a way. I thought I would take the last week and one-half, and just not think about my CLL or any other medical problems.

I got a blood draw on Monday. I'm hoping the WBC is still low, and all of the other numbers continue to be stable.

I went for a hike on Sunday and did extremely well, felt fine, and thought about doing a long hike in September or so, if I can get in appropriate condition. I was worried about anemia as I had a night of blood pounding in my ear (see Dave's blog; he found it was associated with autoimmune hemolytic anemia), but I did fine and felt wonderful. I don't think I have significant anemia, if I have any at all.

It is nice to not have to think about CLL for a week and a half.

Wednesday, July 16, 2008

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!