Thursday, February 21, 2008

Houston...we have a (minor) problem.

Dave’s Great Adventure, Book 3
Chapter 1, Verse 4
February 20, 2008
Houston…we have a (minor) problem

Well, you know, the problem with chemotherapy is that it whacks your immune system and so you have to be real careful to avoid crowds and sick people. And, you know, the problem with chemotherapy is that it’s given in hospitals and clinics. And that’s where crowds OF sick people tend to congregate. Heck of a deal.

When I’m doing this stuff, Kathy always runs interference for me, handling the money, opening the doors (so I don’t touch doorknobs), steering me away from any coughing she hears, giving me the hand sanitizer before I eat and stuff like that. But we still have to sit in waiting rooms. M. D. Anderson is a very popular place, but for that perverse reason just about all the folks that are there are sick, many of them desperately so. The halls and elevators are crowded with people huddled under blankets, wearing masks, wearing knit hats over their chemically balded heads, and with tubes emerging from under their sleeves or over their collars. It makes you sad to see so many very, very ill folks. In the best of circumstances, hospitals harbor many of the worst bacteria around. Having lots of sick folks there mean that lots of bad bugs congregate in hospitals. You don’t want to be in a hospital any longer than you absolutely have to be.

So my last day of this round’s chemotherapy, on Valentine’s Day, went well, but because I was not unexpectedly feeling tired, we spent an extra night in Houston (without a massage!). But by the time we got home Kathy was sick. Nothing too serious, mind you, but she had a scratchy throat, runny nose, a little cough developing, and the usual signs of a cold coming on. She was becoming the person she tries to keep me away from.

So she bought lots of the alcohol hand stuff, got some masks, made me start using a different phone from the one she used, and even tried to move into the guest bedroom. But I wouldn’t let her. She wears masks whenever she’s preparing food, wipes down the TV remote before she hands it to me and is even spraying the tub down with Lysol after she gets out! She won’t get close to me. Man… tough love!

Meanwhile, the drugs really hit me. This weekend I was pretty much down for the count. I had the “fuzzies” bad and couldn’t read the paper. I spent most of my time horizontal, either in bed or on the couch. I expected that, but what I didn’t expect was splitting headaches. I hadn’t experienced them before, but I had been getting them each day since the Rituxan infusion last Monday, and they were getting worse each day. I went through a lot of Fioricet and Imitrex (drugs for migraine headaches) but was able to get only temporary relief. I finally broke the headaches with a combination of four drugs that I’m not going to spell out for fear that someone else might take it as “doctor-recommended.”

A few other things happened too. I’ve been slightly hoarse since about day two of the infusions, but that tends to happen after the steroids and all the fluids I get. But it just hasn’t disappeared yet. Maybe a touch of Kathy’s cold? And whereas I generally gained about 12-15 pounds with each infusion in the past (between all the steroids and fluids), and even needed special jeans for my “fat” days, this time I’ve lost about six pounds, at least partially because the miserable headaches put a damper on my appetite for several days. But I can stand to lose a few pounds.

Folks often ask about the side effects when I’m undergoing the infusions. Let me mention a couple more, one of which I don’t have. First, I’m not losing my hair this time. I may lose some with time, but the last time I did the FCR regimen in 2002 (without the Avastin) my hair thinned a bit but I didn’t go bald.

And the Zofran, the miracle drug I told you about that is so great for nausea that I was able to eat my Ruggle’s burger and follow it with crème brulee…well, it does indeed work great. It quiets the gastrointestinal system so very effectively that nausea is eliminated. But it works so well that, uh, elimination is eliminated too. Food doesn’t come up, but it doesn’t make progress toward the, the…nether aperture either. I guess when my pregnant patients, to whom I gave Zofran, complained of constipation, I blamed it on the pregnancy and Denver’s dry climate, which were certainly factors in the problem. But I’m guessing that the Zofran didn’t help at all. It’s not a problem that commonly affects guys, seemingly being more of an issue for with the gentler sex. Seems many women get it when they travel…don’t know why, but they do. Anyway, it’s not a problem I’m generally familiar with, but one that I resorted to a little milk of magnesia to take care of after I started to get pretty uncomfortable. Good old MOM.

For all my whining, though, the side effects of my chemotherapy cycles have been far less than those folks getting drugs for breast cancer, most lymphomas, and many gastrointestinal cancers. Those folks can be just deathly ill with nausea and vomiting, weakness, mouth ulcers, diarrhea, extremely depressed immune systems and white blood cell counts and so much more. I have much to be thankful for.

I went in to our local clinic on Monday to get my first post-infusion complete blood count (CBC). I was blown away to hear that my white count, which had been about 88,000 before we started, was down to 3,100! My gosh, after only one of the six planned infusions we have destroyed 97% of the white cells that had been flowing in my veins. And what is more amazing, really, is that of the 3,100 white cells left, most of them were bacteria fighters, the neutrophils. In other words, the chemotherapy had effectively targeted the bad guys but spared most of the good guys. That’s because of the Rituxan.

[WARNING: TECHNICAL STUFF FOLLOWS] Rituxan is one of a whole new category of drugs. It’s not even chemotherapy, in some ways, because it’s an antibody; a murine (or mouse) antibody, believe it or not. (Many of my friends who have followed my adventures for years have heard this before, but there are many new folks out there now whom I’m just dying to bore with the details.) It’s an antibody against what’s called the CD20 antigen, a protein that appears on the cell membrane of all CLL lymphocytes. Now, when you get a flu shot or a tetanus shot, you’re getting a bit of the foreign protein (the antigen) of the tetanus or flu and so your body produces antibodies to the germ, virus or toxin. Then, when your body encounters those things in your blood stream, the antibodies glom onto it and allow your white cells to destroy it. So that’s what Rituxan (and Avastin, too) do and why they work so well. The Rituxan antibodies coat the leukemic cells (but not the bacteria fighting neutrophils) and then my immune system destroys them. Cool!

A couple of problems present themselves, however. First, most normal lymphocytes have some, but not as much, of the CD20 antigen, too, and they may get taken down with the CLL cells. And secondly, the other drugs that are given with the Rituxan, the Fludara and Cytoxan… well, they work well, but they damage my immune system, the same immune system that’s supposed to be taking out the CLL cells after the Rituxan coats them.

Most chemotherapy works by attacking rapidly dividing cells, on the theory that cancerous cells are dividing more rapidly than normal cells. Cytoxan is a great example of that; it’s the old fashioned “bombs away” drug that clear cuts through the body, slashing and burning all rapidly dividing cells. But it also gets rapidly dividing cells in the stomach, mouth, intestines, etc. And it kills off lots of the cells from the immune system which are also trying to multiply rapidly. And Fludara is just about as bad. It’s derived from a chemical that was found in the bloodstream of the “bubble boy” who had a complete immune deficiency. He had this chemical which was destroying his white cells, and hence his immune system. They’ve synthesized it and now it’s used to kill off abnormal white cells, but it, too, takes out many of the good guys.

But by balancing the amounts of the Cytoxan, Fludara and Rituxan, they’ve found that they work very, very well together, better even than they work individually, and don’t completely destroy the patient’s immune system. But, my immune system will be compromised for many months, or even years, after we complete my therapy.

I am very happy with our experiences at MDA. They have a very competent and extremely knowledgeable staff. Before each infusion they showed me the drug they were giving, told me the dosage and compared the name on the IV bag with my armband. And they’re quick! Since they use so much less in terms of fluids during the infusions, the infusions go by much faster. Our last day there the drugs only took 90 minutes to flow in. Not even enough time to read much of the material we’d brought with us. We brought a lot, because in the past we’d spend hours and hours getting the drugs. Didn’t need it! And because we’d been getting up (and by “we” I mean “Kathy”) at 5:30 AM (I’d make it out of bed about thirty to forty minutes later) because I had 7:15 appointments to get blood drawn, we slept through most of the procedures anyway.

Plus, the staff at MDA is finely tuned to their patient’s needs. While I was getting my infusions and couldn’t get out, staff members came around taking orders for meals, at no additional cost. And another person, likely a volunteer, came around offering hats to us and the other “soon to be bald” patients; knit caps, baseball caps and more. Another volunteer walked in one day and just asked if there was anything she could do for us. Like many of the volunteers, she had a personal connection, her husband having been treated there as well. She brought us something to drink as we hadn’t had much yet that morning.

It’s not a perfect place, but it’s good. I think they could do a better job of coordinating blood draws to minimize the number of needle sticks folks get (I got five one morning alone) and their staff varies a little in competence and diligence, as it will anywhere. One morning, when I was getting my Rituxan, my blood pressure and other “vital signs” weren’t checked for three hours, when I know they were supposed to be checked every fifteen minutes for the first couple of hours. But I was feeling okay and didn’t raise the issue with the nurse. I suppose I should have.

But we’re finished with MDA for a while. If all goes as expected we’ll get at least the next two courses of chemotherapy here in Denton, following instructions provided by Dr. Keating and his crew. I’m due back in Houston no later than May, however, for a follow-up visit and another bone marrow biopsy.

This has gotten longer that I had intended, and I haven’t gotten around the Kauai story yet. Next time…I promise. And some more feedback about this stuff too, okay?

I’m feeling much better and my appetite has returned. Our friends Bonnie and Quinn brought me some hot wings, so my post-chemo need for spicy foods has been assuaged for now. And it was a great day on Thursday with temperatures in the low 70s so I was able to sit out on the patio and enjoy the sun. Except for my wife warning me not to get too much sun. You see, I’m photosensitive while undergoing chemo and can burn more easily. Not only that, but I’m more prone to get skin cancer because I have leukemia. Kathy watches out for these things when I don’t. All in all, I’m doing very well and hope to get out of the house in the next couple of days.

That’ll do it for now. Thanks for all your messages and feedback.