A Patient's Journal with CLL

Townsend Letter for Doctors and Patients, August, 2001 by Andrew Schorr

Andrew Schorr is a co-founder of HealthTalk Interactive Inc. (HealthTalk.com). A former journalist and television news reporter and producer, he was diagnosed with Chronic Lymphocytic Leukemia in 1996 as a result of a routine blood test. In this journal Andrew tells his story of initiating treatment.

Day One - August 21,2000

On the plane to Houston - it's a four-hour flight from my home near Seattle, Washington. My wife, Esther, and I find ourselves making this trip in order to get the very best medical care for me.

Chronic Lymphocytic Leukemia (CLL) is not a common disease. It would not be high on a list of cancers treated by community oncologists and even by many university doctors. Early on we decided to get a world authority, Dr. Michael Keating, at M.D. Anderson Cancer Center, in Houston, Texas, involved in advising us how to plan for the future and in guiding my medical care when that should be needed. Now, after four-and-a-half years with no treatment, treatment does appear to be needed. While I continue to feel good most everyday, my spleen is now obviously enlarged (although not painful), lymph nodes are obvious on my neck and in my groin (however, usually not tender), and the running I love to do every day is more difficult - my legs just feel heavy. None of that is surprising with a white blood count that has risen from 18,000 in 1996 when the disease was discovered to 241,000 now. While other blood counts including hematocrit and platelets remain low normal, the trend clearly shows disease progression.

From my interviews with CLL experts on HealthTalk.com, conversations with my local oncologist in Seattle and with Dr. Keating, it has become clear a new clinical trial of Dr. Keating's might be right for me. It uses a monoclonal antibody, Rituxan, in combination with Fludara and Cytoxan in an effort to get a long-term remission in a previously untreated patient. Dr. Keating and other CLL researchers are excited about the early results from the trial. Recently, I had an extended telephone conversation with a patient and his wife from Dallas. He had recently begun Dr. Keating's trial and was very pleased with the early results.

So here I am, following in his footsteps. I am aware getting chemotherapy is no fun. The first infusion of Rituxan can cause fever and chills and, in extremely rare cases, death. But I am excited by Dr. Keating's enthusiasm for getting a long-term remission for me. I am willing to take this step in the hope that rather than "upsetting the apple cart" it will lead to a long, healthier life. The faces of my three small children and the dream of dancing at their weddings make it worth it!

Day Two - August 22, 2000

This is testing, consultation, and- if we all agree - treatment day. After four-and-a-half years I am faced with the reality of having cancer and not any longer being able to "cruise" along with it inside my body.

First stop was the lab for a blood draw. I visited here twice before over four years, and the ladies were just as chatty as ever. Once again, this cancer center projected an extremely upbeat atmosphere. On this visit they drew only nine tubes of blood - I think last time it was 10. Even with leukemia, I was relieved to see that my blood was still red!

Next stop was to check in for a bone marrow aspiration and biopsy. In the hallway I spotted the female technician who sweet-talked me through my last "BMB" a year and a half ago. That time there was "zero" pain and no discomfort.. I was hoping that today's test would be a repeat performance.

There was an extended wait for the exam. But the wait was welcome because I ran into a Houston CLLer, Michael Pearlman. I made Michael's acquaintance over the Internet on the CLL list. When I visited here in late 1998, he welcomed me and took me out to lunch at one of his regular haunts. Today, Michael was in for a platelet transfusion. Since last fall, he's had a full boat of treatments and he was just released from the hospital after fighting an infection (I would later hear that Michael had an unusually hard time with the latest therapies, even so, he remains quite upbeat). Once again, Michael presented a "welcome to Houston, it's going to be OK" smile.

The pager went off, that's the pager the bone marrow biopsy registration desk gave me. It was time to take the horizontal position. This time my technician would be Larry That's good because Michael Pearlman gave him rave reviews as the provider of a painless procedure. Sure enough, Larry lived up to his reputation. Getting needles stuck in my hip -- believe it or not -- was a "piece of cake." Larry told me he's been at M.D. Anderson for 27 years. Years ago, he says, it was a somewhat depressing place to work. But now, new protocols have made a tremendous difference in cancer survival and quality of life. Just the same, Larry wished me good luck, and I was happy to accept his good wishes.

Lunchtime brought a conversation with another Houston CLLer, Bill Hoops -- a local attorney. He's the founder of the CLL Foundation, and is raising money to facilitate new research on this relatively uncommon disease. Bill -- like me -- is a four-year survivor, and is doing quite well.