Wednesday, November 20, 2002


Dave’s Great Adventure
Chapter 5, Verse 2
November 20, 2002

Well, it’s been a week now since my doc told me that my bone marrow wouldn’t tolerate any more chemotherapy and left Kathy and me with nothing to do. We’d been planning our lives around these monthly infusions, so now, while we wait for my bone marrow to recover, we’re left with some open time. Like I reported last time, we’re going to get a couple of blood counts in the next few weeks, plus that ever-popular procedure, the bone marrow biopsy in about three weeks from now.

I need to update some information I sent out in my last letter. I said my white count had gone up to about 2,000. Well, since I have access to the computer with all the data, I looked up my last lab tests. Either Brian misread the numbers or Kathy and I misheard them, but my white count actually went up to over 5,000! Almost all of the increase was in neutrophils, most likely a result of the Neupogen I had been injecting. The net result is that my white count is normal...almost completely normal (except for very low lymphocyte counts), for the first time in many months. We need to see what it does over the next month or so, because as the Neupogen effect wears off, and my marrow recovers from the chemo, the numbers may change. But for now, the counts are normal, and my doc wrote in my chart that I was in “complete remission.”

That term, “complete remission,” is a very nice term to hear, indeed. That means I’ve made the first two cuts in the treatment of this disease. Many of you haven’t been on the DGA mailing list since the beginning, but early on I explained what we were trying to do with my therapy. There is really no known cure for this disease (chronic lymphocytic leukemia). There are various treatments, and they may extend longevity, but there is no cure. However, a very recent study from M. D. Anderson in Houston reported the results of using some combination chemotherapy, the Fludara and Cytoxan, which have been around for years, with a new drug, the Rituxan, which has only recently been approved for use, but was developed for use in treating lymphomas. Lymphomas and leukemias are not the same disease, but they share some characteristics, one of which is that many of the abnormal cells share a common antigen (a particularly shaped portion of the cell wall). In this case, the antigen is called the CD-20 antigen.

Rituxan is actually a mouse antibody against the CD-20 antigen, and allows the body’s own immune system to destroy the abnormal cells. In combination with the standard chemotherapy, the Fludara and Cytoxan, the folks at M. D. Anderson found that there was a much higher response rate and remission rate than with standard therapy. Where a good response rate in the past, with most drugs was about 20%, they were getting up to 90+% response rates with the new combination. And up to a third or more of the folks that responded with a complete or partial remission were negative for disease with some sophisticated molecular testing, about 18 months after the treatment. So, that’s why we were using this very new, and really, almost experimental, protocol. Now, being negative for the disease with the molecular testing (called a PCR probe) is very encouraging. That is not necessarily a cure, but it’s the best anyone has gotten so far!

So, the first test I passed was that I responded to the drugs. Some folks don’t. In some cases, patients with this disease had their leukemias get worse despite the treatment. A few died of their disease, a few died of the treatment! Luckily, I did neither.

Next, at least in the very, very short term (pending my bone marrow biopsy), I seem to be in a complete remission. That was the second test. Some of the folks who responded to the drugs got only a partial response and therefore a partial remission. I seem to be in the fortunate portion of the folks with a complete remission (keep your fingers crossed for the bone marrow results!).

Now, of the folks who got into a complete remission, over half (56%) were negative for the disease with the PCR probe. We won’t be able to do that test (I believe it’s a research tool) but if my bone marrow is negative for apparent leukemic cells, and the flow cytometry fails to find evidence of disease, there’s a good chance that I’ll be in that fortunate group. At least the odds are better than flipping a coin! I’ll take those odds, in a disease that has had no known cure in the past. I’ll keep you updated as more data becomes available.

So, Kathy and I have been trying to find things to do that don’t involve getting into too many crowds of people. Though my white count, for now, is pretty normal, I’m going to be immunosuppressed and therefore be unable to effectively fight off some infections for the next six to nine months. That’s because the lymphocytes we’ve been killing off include mostly the B lymphocytes, which are involved in antibody production. Anyway, in an attempt to get back into a normal routine, we went to church last Sunday, but as I did at the medical meeting in Maui, we sat at the far edge of the congregation, away from the mass of people. Just as in Maui, there was a lot of coughing going on.

It’s really interesting how many people you hear coughing or sneezing when you really, really don’t want to be near anyone with a cold. Kathy and I automatically look at each other in alarm whenever we hear a cough anywhere near us; in church, a restaurant, or a store. And I’ve become very sensitive to touching things that might carry viruses, like door handles, money, people’s hands, etc. I wash my hands all the time and we carry (which is to say, Kathy carries in her purse) a small bottle of the new waterless hand cleaner that kills viruses (it’s mostly alcohol) and we both use the stuff all the time. And I keep my hands away from my face, I keep my fingers out of my mouth, and I don’t bite my fingernails. I really don’t want to catch a cold. My doc says I won’t easily be able to shake it off if I get one. And catching the flu would be a big problem as I wouldn’t be able to mount an immune response to the virus. I didn’t get the flu shot for the same reason; I wouldn’t be able to produce antibodies to it anyway.

So, we’ve been working around the house, doing a little shopping, and starting to get back into somewhat of a normal routine after all these months of living around my chemo cycles. I’ve been able to start working out a little for the first time in months. We have a Nordic Track Cross-Trainer that I was exercising on three times a week up until I got sick last February. I haven’t done anything in months, even when I felt well, because I knew I was going to do more chemo every four weeks and get back out of shape, so I just stopped exercising entirely. Now I have no excuses, so I’m slowly starting to get back in shape.

Kathy and I have had a number of things we were going to do “some day.” Going to Hawaii was one of them. Another was to go to Alaska. We’ve decided that since the future is uncertain, we’re going to start doing those things now. There is a self-guided tour to Alaska that we had been looking at for a number of months, and this week we signed up for it. Next June, presuming I’m still doing well, we’ll be flying to Juneau, Alaska for an eleven day trip. I think this should be a very interesting trip; it includes whale watching, a helicopter ride up to a glacier, a float plane ride out to an island with a large number of bears and bald eagles, a train ride for a day, a whitewater rafting trip, and “flightseeing” with a bush pilot who will take us around Mount McKinley. That should be enough to keep us busy for the eleven days. Next, we’re looking at a trip to Antarctica, maybe next year!!!

Did anyone else get up to look at the Leonids meteor shower last night? Kathy and I got up at 3:00 AM and spent an hour out on the deck in sub-freezing temperatures watching the meteors. It was a pretty good show, but we had partly cloudy skies that obscured some of the meteors, and the quantity of meteors wasn’t near what it was last year. I think I was spoiled by last year’s show, where there were probably a couple of meteors per second, a real meteor “storm.” By comparison, this year’s display was more a like a meteor “drizzle” as we saw perhaps two to four meteors a minute. Still, it was a pretty good show.

I think I’ve gone on long enough for this “verse.” We’re going to try to go to Dallas and Oklahoma to visit Kathy’s parents and our kids over Thanksgiving week. I’ll let you know how our trip goes, and how my next blood tests turn out, in the next exciting verse!

Until then,