Saturday, January 19, 2008

Update of the Update

Hello again,

Not too long after I sent out my update, I heard back from my local doc. He had already talked with Dr. Keating at M. D. Anderson about what they thought I should do next. I didn't expect a reply so fast. I thought it would at least be next week. Anyway, they were going to discuss the two opposing plans for my next therapy, standard chemotherapy (which is not curative but can "buy" more time), or the new, unproven procedure, which has yet to cure or even really help anyone. Plan A or Plan B. Well, I wish I had been privy to the conversation they had, because when they finished their discussion they decided on neither plan. Instead, we're going to consider "Plan C!" Now, "Plan C" is yet another experimental protocol, but using some standard anti-cancer drugs in a new way. If you want the gory details, the protocol is:

Now, this protocol starts with a combination of Fludara, Cytoxan and Rituxan (or "FCR") which is the combination of drugs I was given back in 2002. It worked quite well. In fact, it worked so well, that we had to stop the regimen early because my white count went too low and I was at risk for infections. What's different about the protocol is that now they want to add a drug called Avastin to the mix to see how it works. Avastin is a monoclonal antibody (like Rituxan) but it inhibits vascular endothelial growth factor (the endothelium is the lining of the blood vessels), which causes abnormal blood vessels to grow in tumors, and accelerates the tumor's growth. Avastin has been around for a while and is used a lot, but as far a I can tell, it's just been used in solid tumors like bowel cancer, lung cancer, pancreatic cancer and kidney cancer. But, like so many anti-cancer drugs, Avastin has some potentially significant side effects:

(I don't expect even one of you to read through all that stuff, but just a glance will tell you it's a serious drug)

The side effects and complications include bowel perforations, kidney damage leading to dialysis, bleeding into your lungs, severe hypertension, some rare form of brain damage, and a lot more. Wow! But I'm puzzled about why they're wanting to consider this drug in my case, and in the case of any patient with leukemia. Avastin works by controlling the growth of aberrant blood vessels in tumors. But I don't even understand, yet, why Avastin should work in leukemia, 'cause as far as I know, there aren't any aberrant blood vessels to control. Anyway, at this point I'm waiting for a call back from MDA to get an appointment, hopefully soon, to get in to discuss the new protocol and get set up for the treatments. Apparently what they'll want to do is schedule the first series of infusions down there in Houston and then I can have the next several month's infusions back here in Denton.

Stay tuned.


Thursday, January 17, 2008


Hi everyone,

Ever since I finished my last chemo treatments in the early spring of 2004, I've been asking my docs, "What's next, and when?" And I've never gotten really good answers because, as one of my docs in Denver put it, the "best treatment" is a moving target. In other words, there is really no best treatment, just varying perceptions as what might be okay, since none of the available treatments is a actually a cure. I've also gotten varying opinions about the "when" question, because there are no hard and fast guidelines about even when a treatment should start. Survival apparently is not enhanced by early treatment, even if it results in a complete remission. Some folks treat when your white count doubles within a year; some when your platelet counts drop; others when you're feeling badly or are having night sweats. I still don't have any precise answers to any of these questions, but we're getting closer to the "when"part.

My white count is now 87,000, the highest it's ever been. Even when I started my first course of chemo back in 2002, it was "only" 65,000. (Normal is between 3,000 and about 10,000.) At the start of last year my count was about 15,000 or so. My white count,therefore, has gone up six times what is was a year ago. We haven't treated yet because I've been feeling relatively normal, but finally, my local doc thinks we should probably start something and do it within the next few weeks or a month or so.

Now, most of you know that the docs at M. D. Anderson have offered me the opportunity to take part in an experimental study that hopes to use my own immune system to attack the abnormal leukemic cells. They hope to do this by collecting my leukemic cells and treating them with viral DNA, then putting them back in me so my T-lymphocytes (the other kind; my leukemic cells are abnormal B-lymphocytes) will learn to recognize them as "foreign" and attack and kill them off. The second phase of that study, which I've been invited to join, should be starting soon, maybe just in time. So far the study has neither killed nor cured anyone, after preliminary trials on ten brave souls. My local doc has been a bit hesitant for me to take part, thinking that this cure might, indeed, be worse than my disease (people have randomly, unexpectedly died during gene therapy trials). He's thinking that we should consider more mainstream chemotherapy, like that I've already done or similar regimens. But, like my other docs, it's not clear which, if any, of these other regimens might be "best." But, he's going to call my doc in Houston and they're going to decide on what they think I ought to do. That'll be nice, 'cause for several months now I've been caught between the two schools of thought; that I should do the study regimen and that I shouldn't. Hopefully they'll talk it over and come to a conclusion that they both agree on, so we can proceed. I'm kinda wanting to do the new study, but will be a royal pain because we'll have to spend a lot of time in Houston, at our own expense, and that will also involve a lot of travel back and forth between home and Houston, about a 600 mile round trip. But, bottom line, we'll start something again within weeks, and it may or may not be the new protocol. I'll keep you posted.

Any questions?