12 year anniversary

I suppose we have several anniversaries to keep track of in our lives. Wedding anniversaries, the start of a business, milestones for your kids.

CLL patients keep track of another anniversary: their diagnosis with CLL.

Twelve years ago, I felt a large lump in my neck, on the ferry from Vallejo to San Francisco. I had planned a nice day in SF as a reward for nine months of hard work renovating an older house I had purchased some years earlier. The house was a wreck, and needed new plumbing, electrical and structural work. But, I finally got the job done.

That lump, of course, turned out to be CLL. At 48 I joined the millions world-wide fighting cancer.

I was, (and am) the type of person who needs to know as much about my disease as possible, especially the treatments available that could rid me of this cancer. That's when I first encountered the word 'incurable'. I can still remember when I read that CLL had no cure; it was in my driveway, reading a long review article about CLL from Leukemia & Lymphoma Society. Not a pleasant word to read.

Of course, 12 years ago, there were fewer options for treatment than there are today. It's odd to look at it this way, but patients diagnosed now have a much brighter outlook than those diagnosed a dozen years ago. I wish I could have postponed my disease a decade, or more.

Back then, chlorambucil was the gold standard to treat CLL. It wasn't a cure, and complete remissions were rare. Fludarabine had come onto the market, and a year earlier, something called rituximab was approved by the FDA. It would take a while to sort all of this out.

I joined the CLL group that GrannyBarb started, read as much as I could, and tried to become a patient advocate. I flew to Washington, D.C. two years running at the behest of the Lymphoma Foundation of America (now the Lymphoma Research Foundation) to lobby my congressional representatives for more funding for this all-too-common disease. Everyone was sympathetic, and we have maintained good funding for the disease, especially through the latter years of the Clinton administration, and the early years of the Bush administration. (September 11 certainly took the focus of the federal research community away from ordinary research and turned it towards research on bioterrorism.)

A couple of years later I consulted with Dr. Thomas Kipps at the University of California, San Diego. His name kept popping up in the research I was continuing to do on the disease, he was in-state, and my insurance would cover a visit (although I'd gladly pay out-of-pocket to consult one of the best CLL minds in the world).

There I learned that I was unmutated, ZAP-70 positive, 6q deletion, and had a high Beta-2-Microglobulin and LDH level. Couple that with the fact that I am male, and young for a patient, and I realized that I had been dealt a poor hand indeed.

Yet I avoided treatment for eight years. I tried any non-chemo therapy I could, including zinc to lower the amount of copper in my body (copper promotes angiogenesis, the growth of new blood vessels), resveratrol, EGCG, and Chinese herbal medicine.

Dr. Kipps and I concluded that treatment was indicated when my absolute lymphocyte count (ALC), which had been boringly stable (though elevated, about 30,000 as I recall), took off like a rocket. We waited a few months to see if it was real; the increase was.

I decided on high dose methylprednisolone plus rituximab for my first treatment. Dr. Kipps likes clinical trials, and I was game, so I decided on that for my first treatment. I got in on the trial of high-dose rituximab with the steroids. Unfortunately, because of red tape, I had to wait almost a year for the trial to start (September 2006). In retrospect, that was a mistake. I've come to believe that the time to start treatment is when there is a change for the worse in blood counts. Unfortunately, after that treatment, my status changed to 11q deletion, which carries a 'grim' prognosis. That was in 2007.

So how do I feel at 12 years? I feel OK. I've had a number of other treatments, of course, all associated with clinical trials. The last treatment, flavopiridol, was quite effective; it took my enlarged abdominal lymph nodes way down, almost to normal. I'd do that one again, though the side effects were inconvenient to say the least. My experiences with that drug are detailed in this blog. In spite of the difficulties I had, I had a very good response. My abdominal nodes had grown the size of a small cantaloupe, and was quite uncomfortable. And the drug drove the 11q down to 11 percent of my CLL cells, which is good.

What's next? Dr. Kipps is worried that the CLL has started to make a re-appearance only six or seven months after the end of my treatment (11q patients only have a nine-month remission, on average. I had even less). So I am exploring yet another clinical trial. He's also concerned that my blood numbers may indicate further genetic mutations that indicate perhaps myelodysplastic syndrome or something else. Dr. Coutre at Stanford has explained the FCR I unfortunately took has 'chewed up' or 'beaten-up' my bone marrow, probably permanently. This complicates the picture.

My spleen and liver remain normal sized, at least at present. And the lymphocyte count remains low (too low, in fact, thanks to FCR).

So, like always, we have to see what happens. So far, I've avoided most hospital stays, apart from the five days after the first dosing of HDMP+R, and an infection and fever a year later.

For that, I am thankful to God and modern medicine. I know my time on this planet, like everyone's is limited. We all get voted off the planet, eventually. I'm very glad I've been able to hang around here longer than I thought possible, given my negative markers.