Saturday, February 16, 2008

Lucky Number Seven

Dave’s Great Adventure, Book 3
Chapter 1, Verse 3
February 16, 2008
Lucky Number Seven

You know, I didn’t really plan on being an experimental model, a “lab rat” if you will, as I was explaining to Martin recently. Martin is a friend from the Leukemia and Lymphoma Society (LLS). He’s a marathoner and also trains others to run marathons to raise money for the LLS. I’m his gynecologist.

It appears that I'm to be a guinea pig for new treatments for chronic lymphocytic leukemia. I'm not sure how I got this role, but it has come to me. I suppose someone has to be among the first to try new things or there wouldn’t be any progress in anything, would there? When I first became ill back in early 2002, there was no agreed upon “best” treatment for CLL nor any general agreement even on if or when to start treatments, since survival wasn’t generally extended even with many of the available treatments. As most of you know, my dad died after having this disease for about five years.

But I was “lucky” enough to get sick at the right time. I got sick while living in Colorado, in late February 2002 and met my oncologist, a great guy named Brian Koester, a month later. He had just read an article about some new treatments which had been tried down in Texas at a place called M. D. Anderson, and they were reporting fantastic results. The lead investigator for these studies was a doctor named Michael Keating. The experimental trials had been performed on, I think about 130 people down in Houston, and the results looked so promising that Brian said we ought to try them on me too. The new combination of drugs used Fludara (fludarabine) and Cytoxan (cyclophosphamide), which had been around for many years, with a new and unapproved (at least for its use in leukemia) drug called Rituxan (rituximab). Rituxan had been approved only for use in patients with lymphomas. This combination of drugs has come to be known as FCR.

So, Brian photocopied off the regimen that Dr. Keating and his crew had brewed up and he gave the orders to his nurses. And for the first time in Brian’s experience and for probably the first time in Denver, the FCR treatments were used. On me. And the results were just great. Within four months I was in complete remission. I was ecstatic at that, but the joy was relatively short lived, as we found the disease was slowly returning about a year later. We probably didn’t use the regimen long enough, as it turned out.

So Brian sent me to a colleague named Jeff Matous, down the street, who is a “transplanter.” We decided that while the disease was at a relatively low level we’d try to collect some of my own stem cells to use in the future when I had otherwise run out of chemotherapy options and might need a stem cell transplant. Jeff used a much higher dose of Rituxan, given several times over a couple of weeks, combined with a very large dose of the Cytoxan, to “clean out” my bone marrow before we collected a bunch of my own stem cells. One day during the process, which took us a few weeks, I asked Jeff if things were going as expected. He said, “I don’t know…I’ve never done this before.” But it did go well, and I now have seven million of my own stem cells in a freezer in Denver, awaiting the day that I might need them (the use of one’s own stem cells is a bit controversial, and in fact does not generally work as well as using a donor stem cell transplant, but it’s an option that I can consider, and is a topic for another day).

Now, six years after Brian tried Dr. Keating’s regimen and four years after Jeff tried his new combination of drugs on me, I find myself at M. D. Anderson Medical Center, the very place at which the FCR combination was perfected, and being cared for by the doc who led the group who designed it! Talk about being in the right place at the right time. Now it’s time to try something new again, and Dr. Keating is the one trying the new stuff.

I’ve told you about the new stuff, the Avastin (bevacizumab—“beh-vah-SIZZ-oo-mab”) and all of its possible side effects. I’ve even been a bit uneasy about trying it because of all I’ve read about the “severe and sometimes fatal” complications. I was talking about this with Martin, whose dad had pancreatic cancer and was treated at M. D. Anderson with Avastin. His dad developed appendicitis after his Avastin therapy and died shortly thereafter. But pancreatic cancer is an extremely aggressive tumor and survival is generally measured in a few months even in the best cases. It appears that Avastin is reasonably well tolerated by otherwise healthy folks, and it’s hoped that its addition to the FCR regimen will keep me going for a few more years. This combination has been tried on six other folks recently and so far, in the short term, they’re doing well. I’m number seven.

This is extremely expensive therapy. To me, it’s outrageously and embarrassingly expensive. The Rituxan (rituximab) alone costs several thousand dollars a dose (you might want to buy some stock in its maker, Genentech). The single four day course of therapy I’m getting, including everything, will cost in the range of $80,000 to $120,000, according to my nurses, though I haven’t seen any bills yet. And (this is an important “and”) that’s before the cost of the Avastin is added in. Right now, since this is an investigational study, the drug company is paying for the drug, which costs about $30,000 PER DOSE! (That’s another reason to invest in Genentech!) By the time I hopefully complete the six months of the study protocol it will have cost way over half a million dollars. I just find that to be incredible. Now, I’m not paying that out of MY pocket, but someone is, and in my case, it’s all of you! Between my military retirement benefits and Medicare (which I suddenly found I was going to be included in, starting in March) the taxpayers of America will be picking up my bill. Think about that on April 15th when you file your income tax return. Your tax dollars hard at work! And thank you very much.

But it seems to be working well. Before we started the therapy, Dr. Keating said, to his team, with his New Zealand accented English, “Okay, let’s get him into remission and then we’ll work on the cure!” And off we went, to the infusion room. Before I started the first day’s infusion, my white cell count was about 88,000 (remember that a normal count is somewhere between 3,000 and 10,000). Monday, on the first day of therapy, I got only the Rituxan. The infusion went well, and by the next morning, my white count was only 34,000! So the second day I received the Fludara and Cytoxan infusions and the next morning the count was 17,000.

Well, on day three I was going to receive the Avastin. It was given along with more Fludara and Cytoxan. They hung the IV bag with the Avastin in it and ran it into my vein. I felt…nothing. It could have been a placebo for all I could tell.

I was feeling a little spacey, but not sick, after the drugs so Kathy and I went out for lunch. We found a little place not too far from M. D. Anderson called Ruggles, sort of an upscale burger and sandwich shop and we each had a burger that was way too big, but tasted great. We can recommend Ruggles. I’ve never yet gotten nauseated from the infusions of the drugs I’ve had, probably because of the wonderful anti-nausea drugs that are routinely given in recent years. In Denver I was given Anzemet and “tested” it frequently. Long time readers will remember my frequent stops at Mexican food places on the way home from my infusions. At M. D. Anderson I was given Zofran, a drug I often prescribed to my pregnant patients who had intractable nausea and vomiting with their pregnancies. Both drugs work extremely well.

So, thanks at least in part to the Zofran, I was able to enjoy my burger, and Kathy surprised me with a crème brulee for dessert. When was the last time you got crème brulee at a burger place?

The next day was the last day of my infusions for this cycle. It was also February 14th. Kathy had a Valentine for me. I didn’t have one for her. Now guys, you know it’s never going to be a good day when your wife remembers a birthday, anniversary or Valentine’s Day, and you don’t; am I wrong? I felt bad about it, but Kathy was very understanding, given the circumstances. We HAVE had other things on our minds, recently (though she was still able to plan ahead and my male brain couldn’t!).

We went in for my pre-infusion labs and found that my white count was now down to 10,000. Amazing, isn’t it? We had the infusions over about 90 minutes and were done for the day. I was feeling crappy though, a feeling that had been slowly building over the four days. And the headache that started on day one, after the Rituxan really had never gone away. But these feelings are caused by the destruction of millions of white cells, and each one is pouring out its contents into my bloodstream, just as they do when they’re trying to fight off the flu or something, and that’s exactly how I felt. We went back to the motel and I slept for most of the afternoon. That night I was still achy and couldn’t sleep well, but I know it’s because things are going as they should. End of Round One.

We heard from lots of friends and family recently after I resurrected my “adventure” series. Our long time friend, Kathy, out in Hotlanta (or is it Drylanta now?) opined that even though I didn’t have the restrictions placed on me that I had in the past, maybe it would be safer to go ahead and follow the old guidelines. She said, “Although they said no restrictions, think I would go back to what I did before. NO fruits, (lots of) water, etc. Okay, maybe some SEX.” Hey, Kathy has her priorities right!

And we got a very nice message from our former neighbor, Tom, in Colorado. Tom and his wife were just fantastic folks to live next to. When I was doing my chemotherapy infusions, he’d come over and mow my lawn and take care of things for me. One time, during a round of therapy, I started feeling reasonably well, so I went in to our clinic to see a few patients. I was embarrassed when I came home to find out that Tom’s wife, April, was mowing my lawn while I was out gallivanting around!

I heard, too, from a good friend, Shara, also in Colorado. Shara was a patient of mine for many years, and famously (or notoriously) said at one point, “We need to find some time to get together outside the clinic so I can talk to you with my clothes on.”

Bonnie wrote to say that it was a good thing that things had changed in the last six or so years, and that I was getting less in the way of drugs than before. Bonnie is quite a gal. She’s a neighbor and friend, but she’s also an artist, sculptor and a writer. And, in “retirement” she has become a professional photographer. She’s also the only person I know of who has read through my whole story, from start to finish, other than my long- time friends and such relatives who have been subjected to it, piecemeal, since the beginning of this “adventure.” Bonnie said, “Like a great book, I couldn’t put it down!” Bonnie says I should write a book. No, actually Bonnie INSISTS I write a book. But, that sounds like a lot of work!

Our dear friends Lou and Joan, up in Golden, Colorado, are also staying in touch. We got daily e-cards from them during our time in Houston. That’s just so much like them. When I was out of work for about seven months back in 2002, getting and recovering from my first rounds of chemotherapy, they sent a card in the mail, every single day for the whole seven months! Get well cards, friendship cards, funny cards, etc. Really, really nice folks.

One last thing before I close this “verse.” While we were in Houston we stayed at a very nice Holiday Inn Express near the hospital, a very well-kept and modern facility. There was, in our room, a brochure. It advertised “Emergency Massage.” Yeah, “emergency massage.” “Call Veronica at 713-591-xxxx for your stress management.” You can get Therapeutic Massage in 30 minute blocks, a dollar a minute; “A magnificent blend of soothing bodywork techniques specific for your needs to help increase circulation, promote relaxation and improve sleep patterns.” Now, guys…what kind of "bodywork" techniques “specific for your needs” best increases your circulation, promotes relaxation and puts you immediately to sleep? Yeah, I thought so. (This all reminds me about what happened when we were in El Paso for our son’s wedding and I was having horrible neck and back pain. We saw that a massage therapist was on-call and so I went for a massage in the motel! If you care to, you can read all about in the entry from September 1, 2004. It had my daughter and my female friends and patients rolling with laughter.)

Enough for now. Next time I’ll tell you how we came to be in Kauai recently and how I became Martin’s gynecologist. There is actually a long and convoluted story tied into my disease that accounts for both. And I'll tell you about my blankie, too.