Book Two: Just Like Arnold, It's Baaack!!

Dave’s Great Adventure
Book Two
October 3, 2003
Okay...there’s news.

Well.

I’ve been living in a self-induced fantasy for the last many months. Like just about all cancer patients with a terminal diagnosis, I thought I’d be the exception. The treatments would cure me when they couldn’t cure anyone else. I was in such a great remission, and all. My bone marrow tests were completely normal, they couldn’t find any malignant cells at all. What else could I ask for? We were about to collect some of my own stem cells so we could use them in a transplant back into myself in the distant future, if perchance my fantastic remission were to lapse. My white counts were finally normal. Everything looked great!

So last week I had another bone marrow biopsy, just to be sure that everything was okay before we harvested some of my stem cells. How could it not be okay? It was completely normal just last February. The biopsy wasn’t too bad. Sad to say, I guess I’ve gotten used to them and don’t fear having my hip bones pierced with big needles anymore. My doc does a good job of anesthetizing the area and the drugs they put in the IV seem take the worry out of being close to sharp objects.

It took a week to get the results back. I really wasn’t too worried, but I wanted to see the “Normal” result so we could schedule a stem cell collection pretty soon. I kept surreptitiously going into my medical file on the computer to look for the findings. Kathy was in the clinic on Wednesday afternoon, doing volunteer paperwork as she often does. We were ready to go home, but I thought I’d look one more time.

This time the report was there. “Blah, blah, blah...5% malignant cells present...blah, blah, blah.” “Shit!” I couldn’t believe it. I looked completely through the report, but it didn’t change. The evil leukemic cells, which we had just a few months earlier seemingly completely eradicated, were back. And so soon.

I had imagined that I’d get at least a few years out of this remission, and, as above, fantasized about a cure. A self-induced hallucination.

I stood up and went to Kathy and held her. One of my colleagues walked in on us, saw us a bit teary-eyed, and asked if there was a problem. I told her “it” was back. As we left the clinic, we stopped by to talk to Joan, another colleague, and told her the news. We shared a few hugs and a few more tears, then Kathy and I headed for home. We weren’t very hungry, but decided that we wouldn’t go home to make Kathy cook, so went to a new Mexican food place not too far from the house.

I checked my voice mail and found a message from my doc, explaining the news I had already uncovered. He said he was going to see what options were open to us at this time. But I know what the options are, basically. The same as they were the first time. We do nothing, we try more chemotherapy, or we go for the bone marrow transplant.

The next day at work, I felt just about as I’d felt last year when I first got the news about my leukemia. I was sad, slow, depressed. I only worked half a day, then took Kathy out for a movie and dinner. I have a movie recommendation for you; if you get close to a theater showing “Lost In Translation,” I recommend you turn around and go the other way! (Some will disagree with my assessment).

I’ve been all over the web to see what other folks are doing with chronic lymphocytic leukemia. And you know what? They all do something different. There just is no “standard” treatment. That's because, just as with weight loss plans and hair restoration schemes, none works very well.

Today I got another message from my doc. He has been in contact with my ”transplanter doc,” Jeff Matous, to further look into options. They kinda boil down into what I listed above, but with some more specifics.
1) We can go right back to the treatment I just finished last October (cytoxin, fludarabine and Rituxan), as it, in the short term, worked great. But what is the point of another short term treatment?
2) We can try another chemotherapy. Long-time readers of my notes may remember last summer that I mentioned a drug called Campath. It actually is the only monoclonal antibody approved for use in my form of leukemia, CLL, so that’s an option. Its use is, however, associated with high rates of infections, as it non-selectively kills just about all the white cells it comes across.
3) We can collect some stem cells from me, try to “clean them up” with some chemotherapy while they are outside of me, then kill off all my marrow and then put back my “sanitized” stem cells and hope they turn out all right.
4) We can go right to the “mini-allo” bone marrow transplant that I’ve mentioned in the past, using an unrelated donor’s marrow to replace my own. Since my siblings weren’t born with matching marrow, I’d have to find a donor (which my doc thinks would be possible) but the death rate from this kind of transplant is 25-50%. Of course, the death rate from doing nothing is 100% Compared to that, 25-50% looks pretty good.
5) Or we can try something else. I think I want to be VERY aggressive in this next round of treatment. I’ve found a protocol that is being used at M. D. Anderson Cancer Center in Houston where they do steps (1) and (2) at the same time. If that doesn’t work, then roll all the dice and go for the “mini-allo” transplant.

But, I need to see what my doc comes up with in consultation with his colleagues. Sometime next week I’ll talk with him again, after he’s talked to Jeff, and we’ll formulate some sort of plan. I guess there is really no urgency except in my head. The small amount of residual disease, though it seems like a lot to me, is in reality far less than I had when I found I had the disease last year. I had 40% leukemic cells then, and my doc has patients with upwards of 90%. So 5% isn’t so much, at least in the short term. But, I really want to get moving on this next step. Soon.

I think Book II could be a lot more exciting than the first volume, don’t you think?

So, I’ll get this short update out, and let you know, hopefully soon, what we’re going to do next.

Dave