Tuesday, July 30, 2002

Our bit of heaven, and promising new therapies.

Dave’s Great Adventure
Chapter 1, Verse 6
July 30, 2002

Well, on Sunday I sent an update through Saturday so now I guess I’ll send a bit more on the last few days. It’s been up and down.

Sunday we got up and I felt pretty good. We had breakfast and decided I was well enough to go to church. However, during the church service I was weak and clammy when standing for some of the longer hymns and for a christening they had for four kids.

We went home and changed, and I started feeling a bit better. So we went out to eat; we went to the local custard shop for hot dogs, chips and a Pepsi. Then I had a custard for dessert. Then I had a chocolate-peanut butter sundae, too. Remember, I was just following my doctor’s orders to get a high fat diet!

I felt pretty well for most of the day but had times that I felt weak so I went to the reliable hammock again to try to rest. Mother nature would have none of that; a small dark cloud passed over and sent a short, sparse shower onto the deck. The raindrops felt like icy darts so I was forced back inside.

Later some friends called, asked if we wanted to go out for dinner, and we did. So we went out again, this time for Indian food. My appetite has been pretty much okay throughout this. Everything went down and stayed down just fine.

Monday was a great day. I got up feeling completely back to normal. I felt so good that I spent all day working on things around the house, getting caught up on chores and minor repairs. I figured that the worst of this round of chemo must be over and thought I should try to get myself back into the clinic in a few days if I kept feeling well. I called to see if it might be possible to work a half day or so on Thursday and/or Friday. I got a call back from the boss a while later saying there would be no room for me on those days (?!). Gosh, I have only been gone a couple of weeks! I didn’t think that there would be a problem getting back in to the clinic since I had done my best not to leave too soon (to my dismay, at this point, as it has altered my therapy).

Sic transit gloria!

So, I’ll continue to be off at least until next week. The rest of the day I continued to work around the house and continued to do just fine. Perhaps I overdid it.

I woke up today feeling crappy again, tired, headachy, sleepy. However, Kathy and I had planned a picnic in the mountains today and I was not going to change our plans. So we packed up the 4-Runner, bought a bucket of fried chicken (doctor’s orders) and headed out. We love a little out-of-the-way campground about 65 miles west of town, called the Handcart Campground. It’s a long way from anywhere and we figured it would be quiet on a Tuesday. Well, it was not only quiet, it was deserted. Perfect!

I guess heaven is different to every person, and I hadn’t thought much about heaven until recently (my, isn’t that quite an assumption!) but I decided that Handcart is about as close to heaven as I can get on earth. We were among 75 foot pines, with a stream rushing, about 30 feet away, with a soft wind in the tops of the trees. It was about 75 degrees and sunny through the trees. No other people were within earshot but there were birds in the trees and chipmunks scurrying about. It was just what we had come for.

We ate a picnic lunch, played a card game (Quiddler) which I won, and then I spread a blanket out and lay down on the pine needles. I had brought along my DiscMan, but the sounds of the forest turned out to be all I needed. I settled in for a nap in my piece of heaven. (Well, less the mosquitoes, and it would have been heaven.) The sounds of the stream and the trees put me to sleep.

A while later I awoke, and Kathy joined me on the blanket We fed the birds, which brazenly approached us looking for handouts. We, of course, obliged.

Something kinda funny happened. By now I had the DiscMan going. I was listening to Pink Floyd’s “A Momentary Lapse of Reason.” At the start of the third track (“The Dogs of War”) there is a growling behind the listener. We were deep in bear territory, and when that track started and I heard the so-realistic growl (remember the fantastic sound reproduction I mentioned?) behind me, I startled and whirled around, certain that a bear had come for food! I couldn’t find the source of the growl until the song commenced and I realized it was just the CD.

We lazed around the campground until about five, and then headed out, but instead of going directly home, we went further west, toward the little town of Fairplay, an old mining town of maybe 1000 people, give or take a dog or two. The reason for this side-trip is that there are a couple of Texas ex-patriots who have imported a genuine pit smoker and real barbeque to the Colorado mountains and sell it in their restaurant, the South Perk. It is the best real barbeque in the state, as far as I can determine. The barbeque was to be dinner and I also planned to bring a couple of racks of ribs home in the cooler. But it was closed when we got there!

Sic transit barbeque!

Okay, otherwise it was a perfect day. So we came home and rested. I was still tired, even after my nap, and I guess it was just as well that I hadn’t been scheduled in the clinic in a few days. I wonder when I’ll be able to predict with any accuracy that I’m going to feel well in future days.

My blood counts should be dropping to their lowest in the next few days, and I’ll be getting tested about Thursday to see what effect the chemo is having on my white count (and my other vital counts, as well, like my red cell counts, platelets and neutrophils). It will be interesting to see how I feel during that time, when I will be most vulnerable to infections.

I’d like to say a bit more about the treatments for CLL. Despite my pessimistic letter recently, about the virtual certainty that the disease will return, regardless of treatment, there is reason for cautious optimism. I’ve told you quite a bit about rituximab, the drug that we’re going to be using on me soon (hopefully). It is, as frequently mentioned, an antibody designed to attack lymphoma/leukemic cells specifically. This type of therapy is probably one of the few hopes for a “cure.” This cancer is a tough one, as it is literally everywhere in one’s body; in the marrow, spleen, liver, lymph nodes, intestines, everywhere. It is not like a cancerous leg which you can amputate to save the rest of the body. To “cure” this cancer, you have to somehow rid the body of every single one of the billions of cancerous white cells in the body. A tough job, to be sure.

Even if you kill off 99.9% of them, it will not effect a cure, and eventually the surviving cells will reproduce and the disease will come back, this time in a stronger form as the cells that survived the original treatment will be tougher than the other 99.9% of the cells, which were killed off during the first treatment.

It’s a bit like dumping a box of sand on your living room carpet, rubbing it all into the nap and then trying to get every single grain back out. Can’t be done unless you burn the rug or something.

That’s what they try to do in bone marrow transplants. They try to destroy every cell of the patient’s marrow with high dose chemotherapy and/or radiation, which brings the patient to the brink of death. Then they, hopefully, “rescue” the patient by infusing new, normal marrow. Hopefully, it “takes” and the patient survives.

The other option is to try to find some other method of destroying all those billions of cancerous cells selectively, without destroying all the necessary cells; the ones that make the red cells, etc. That is where antibody treatment brings promise. The antibodies can, hopefully, be designed to attack specific antigens, or specifically shaped proteins, that appear on leukemic cells but not on normal white blood cells. The antibodies could then get into every nook and cranny of the patient’s body, seeking out the abnormal cells and destroying them. That’s something radiation or chemo can’t do without also killing the patient.

Well, rituximab is the first of these antibodies to be developed, but it’s not the only one. There is also one on the market called Campath, of which I’ll probably be telling you more later. It works very well, but is less selective than Rituxan, as it destroys a goodly number of normal cells too. Studies are already underway using Campath AND Rituxan, since they attack different antigens, and early results (very early) are encouraging. Campath leads to more infections than Rituxan, since it destroys more normal cells, which is why it is being used more cautiously so far.

And, there are perhaps three dozen other anti-leukemic antibodies under development at this time. In theory, if antibodies could be designed to attack all the antigens that appear on abnormal cells but not normal ones, then they could be used in some combination to try to selectively destroy all the bad guys but leave the good guys alone. So, there is something to hope for in the coming years. We’ll see what comes to pass.

“And so it goes.”

Until later,

Sunday, July 28, 2002

Chemo effects, and what I expect will happen.

Dave's Great Adventure
Chapter 1, Verse 5

Well, I don't intend to pester you with an update about every little runny nose or ache I have so I've been silent over the past few days. Over all, things are getting a bit better.

When last I put index fingers to keyboard, I was leaving to head out for the hammock since I couldn't think clearly. I did just that and settled in for a nap. But it was too cool and breezy, about 75 degrees (about 24 C) so I had to get up and come in for a sweatshirt! You folks in Texas and Georgia can only dream about such temperatures in July! Anyway, I spent all day Friday in a bit of a fugue state (not literally) and just didn't do much but "hang around" in the hammock or on the couch. I only went out of the house once, to accompany Kathy to the mail box, where I got several great cards from co-workers and offspring. Thanks guys.

Since I was still feeling woozy, we missed a wedding we'd been invited to Friday night, but Kathy did take me out for frozen custard that evening. Then I spent a couple of hours around the house not doing much before we went to bed.

This chemo is going to be an adventure-a-day with unexpected events daily. I got up Saturday not feeling too badly, but after a bath I was overcome with waves of nausea. Yuck! Fortunately the act was not consummated but I was very afraid of producing bilious vomit for a while. I choked down an anti-nausea pill and chewed some antacids to buffer whatever might be coming my way, and collapsed on the floor, sweating. Wow, I thought that any nausea might be on the days of the infusions; not days later! After a few minutes I felt a bit better and went downstairs where Kathy was. She didn't like the way I looked. Said I was too pale. I was still shaky so I went to the couch to rest some more and soon I was snoring (so I hear). A bit later I got up to talk to our daughter and provided a phone consult; she needed antibiotics called in to her neighborhood drug store, so I was accommodating. By then I was feeling somewhat better and had some coffee and toast for breakfast, and kept everything down.

By the afternoon I was feeling much better. So Kathy took me out looking for a DiscMan, since I'll be spending a lot of time either on the hammock or on the recliner in the chemo room in the coming months. Imagine, I'm almost 56 years old and have never had a DiscMan. Well, she took me to Sam's to look around but we didn't find any portable CD players. However, there was a terrific sale going of VHS tapes, since I guess they are going away soon, to be replaced by DVDs. Man, how could I pass them up. We got a series of tapes on the histories of World Wars I and II. Now I've got plenty to watch in the coming weeks.

Next we hit Circuit City where I found a basic Sony CD player and carrying case, and we headed home. I put the batteries in the player, popped in a Loreena McKennitt CD my brother Dan had made for me and turned it on! Man, the technology is so good now. The dynamic response of just the basic little earphones that came with the CD player is just superb! My poor ears, even after being assaulted in the past by helicopter rotors, M-16s, cannons and too many years of Rolling Stones at high volume, could still hear so many subtleties. I love my little CD player. So I went back out on the deck and back into the hammock, listening to Loreena (if you like Celtic, Irish music {with a hint of eastern Indian[?]} sound, she's the one for you) and went to sleep.

Kathy fixed a great meal for dinner, barbequed pork loin with great fixin's. And it all stayed down. No more nausea, I'm happy to report. We spent the evening out on the deck looking at the stars and just being quiet and together.

So what do I expect from this disease and the treatment? Well, let me go to the bottom line and then I'll go back to explain. I expect this disease will kill me, but I just don't know when. I mentioned that the average length of time from diagnosis to death is about 6 years now. That means, of course that some folks live with the disease for more than six years (sometimes decades) but that that some folks have it for less than six years, too. My disease is apparently "aggressive" and that has to worry me. Some folks have an "indolent" form of the disease that never progresses. I couldn't have been lucky enough to get that form.

There are all kinds of treatments for this disease, including what I'm getting. The key word is "treatments" because I can't use the word "cure." The disease seems, invariably, to come back at some point. Then you have to try something else, until nothing works. What I'm going to get, the rituximab with fludarabine and cytoxan, is the newest kid on the block, and I will be pleased (nay, ecstatic!) if I get into complete remission with no genetic evidence of residual disease, like 1/3 of the patients have done on this regimen in the M. D. Anderson study, but if I am so lucky as to fall into this group, I'll expect that it will, at some point, come back again. I think it is a bit like breast cancer; you can be 5, 10 or 20 years out from the disease and it can come back somewhere else and bite you fatally.

I think that I will probably get some relief, temporarily, from my high white counts but that I'm due for more treatments in the future. I think that ultimately I'll have to roll the dice and take my chances with a bone marrow transplant because that will be all that will be available to me. But even that doesn't effect a certain "cure." Folks with successful, perfect match transplants can do well for years before the disease sneaks back. This round of chemo is not the only treatment I'll be looking at, just the first, I'm afraid.

That brings up another problem; even if I'm lucky enough to outlive this disease for a number of years, it will be hard to keep practicing medicine if I'm out of "practice" for six to twelve months at a time for my therapy. I'll be out for most of the next six months. When/if the disease comes back and I need to go for the marrow transplant, I'll be out for a year. I see my medical career winding to a close pretty soon, I'm afraid.

Of course, conversely, when this happened to me I was considering my options for an early retirement. Curiously, now I really can't retire. I need the job for the benefits since I'm facing long and pretty expensive treatments, probably for the rest of my life. Oh, well. I needed something to do anyway. This'll keep me from getting too bored in my dotage.

Enough for now; I'll send another report your way in the coming days, probably not later than when I get my "Ralph" checked late this week.


Friday, July 26, 2002

Rave reviews and "The Fuzzies!"

Dave’s Great Adventure
Chapter 1, verse 4
July 26, 2002

Just a Short Verse

Dave’s Great Adventure opens to rave reviews!!!

“Please keep the episodes coming.” -- Frank in Albuquerque
“...enjoyed reading them so much....” -- Mom in Muscatine
“Keep those notes and adventure stories coming.”--Marcia in Heidelberg
“Dave...you explained things really well.” --Kathy R in Hotlanta
“What the hell is this crap!” -- Ebert and Roeper -- At the Movies

Well folks, yesterday I finally felt like something was happening. I woke up a little weary and the feeling only got worse during the day. I just felt a bit weak, unsteady and I found it difficult to concentrate. I actually had been warned that this lack of concentration might happen. One of my colleagues who has been through chemo for her breast cancer (and who is helping out in our clinic in my absence) told me that her thinking was “fuzzy” during the chemo. Man, she was right. I found it difficult to read entire articles in the paper yesterday. The headlines I could manage, but getting into the details was difficult.

Since I didn’t feel well for the first time, and didn’t feel like doing much around the house yesterday, Kathy took me to a movie. We saw “Road to Perdition,” and I’ll give it two thumbs up, though it was a very somber, dark movie and didn’t do a lot of good for my mood.

Today I feel the same, a little like I’ve been drinking or something. I also notice that even with spell-check there were a number of typos in my message from yesterday. See, I can’t concentrate very well all of a sudden. A couple of days ago I was kinda feeling guilty that I was feeling so well and wasn’t at work, now I know the reason I was told to take off work. Even as I write this I find I can’t keep all my thoughts lined up and have to work to keep the paragraphs flowing. So maybe I’ll quit for now.

There are a bunch of other things I want to write down at some point; how I felt when I got the news about the leukemia, what I expect from the disease and the treatment, and more, but I’ll get those into a subsequent “verse.”

So I think for now I’ll go out and lie in the hammock again since that’s all I’m up for at the moment.

Until later,

Thursday, July 25, 2002

Still doing okay; more about Rituxan

Dave's Great Adventure
Chapter 1, Verse 3
July 25, 2002

Well, the third day has come and gone without any problems, thus far.

Yesterday I started out the day sleeping in a bit late, getting up about 8:30. Kathy was waiting for me downstairs and hadn't gotten ready to go to her swimming aerobics class yet (which starts at 9:00) because she hadn't wanted to bother me. I had to convince her I'd be okay and that she could go to her class, which she really enjoys. So I got her on her way and had some breakfast. Then, I went out and worked on the backyard.

We have lovely aspen trees in our yards. They grow quickly and give great shade and privacy, but the damned things send out shallow roots all over the place and these send up shoots wherever conditions are favorable for growth, like in one's grass. The back yard has lots of these shoots. I've mowed them down repeatedly but they keep coming back, so yesterday, since I was still feeling well, I attacked them with a knife, in order to try to get to the roots. I hacked down a small grove of the silly things. (I feel I must explain some of these side issues in some detail, because, though my Colorado friends know what this is all about, the messages are also going to Georgia, Oklahoma, New Mexico, Montana, Texas, South Carolina, California and to friends in Germany, too)

So after I finished the lawn work I took a bath and wrote a letter to you guys. And then my mind is starting to find things to worry about. "How come you feel so normal? Is the stuff working?" The chemo I'm taking does not always work, of course, but it works most of the time, at least for a while. So I start wondering if I'll be the exception again, like when I got the leukemia in the first place, or like when none of my sibs matched me in marrow typing. I'm a worrier, always have been. Well, I thought I might beat the odds again, and bought a Lotto ticket a couple of days ago; hey, I got a $3.00 winner! It's a start.

After pre-loading with a lot of fluids yesterday we went in for round three of the Fludara and Cytoxin. I again was premedicated with the Anzemet (great stuff) and the dexamethasone and they plugged in the IV. Away we went. Again, no problems at all, no symptoms, no nausea. I joked with my doc that I must be in the placebo control arm of the "study" since I continue to feel so normal. I read for the 90 minutes or so that the infusions took and then we left. It was too early this time to go for Mexican food, so we came home, watched the news and then went out for Wendy's burgers.

I continued to force fluids the rest of the evening, per my nurse's (and Kathy's) instructions and of, course, that made for a relatively restless night with frequent trips to the bathroom. I won't have to do that so much again until the next rounds of the chemo, but I still need to keep well-hydrated because of the allopurinol I'm still taking daily.

Today I don't feel quite so energetic as I had been feeling. I don't know whether it's just that I has a restless night or whether the poisons are finally kicking in. If the medications are finally kicking, so much the better. Maybe I'll stop worrying a little.

Let me tell you a bit more about the Rituxan and why we're going to use it. I mentioned earlier that it is a mouse (!) antibody against specific antigens or proteins on many leukemic cells. (I'll have to remember that as I trap and kill the little field mice that get into our basement every winter; their cousins may be helping me live longer)

The drug was just approved for use against lymphomas a very few years ago, about 1999. But since lymphomas and CLL cells carry many of the same antigens, it was thought that perhaps the drug would work on leukemic cells as well. So, over the last couple of years various organizations have been studying the use of the Rituxan alone or in combination with chemotherapy as a treatment for CLL. These studies have shown some pretty good response rates (partial or complete remission), much better than many standard drugs which often have less than a 20% response rate or so.

The best response was in a study from M. D. Anderson in Houston where they gave the Rituxan concurrently with the Fludara and Cytoxin. This was reported in a publication called "CLL--The Cutting Edge" in April 2002; right up to date. There the response rate was 90+ percent, an astounding rate (but this is still in a small study of about 130+ patients). Of these, about 66% had a complete response, or a normalization of the blood counts, and of the 66% complete responders, about half had no genetic evidence of disease at the end of the short, 18 month study. These are small numbers and the follow up is short as well, but it is very encouraging news in the study of a disease where there really is no know long-range cure yet. There were only two "early deaths" reported in this study, as opposed to the 25% mortality rate from bone marrow transplant, much better odds I think, at least in the short run.

So, that's where we're headed. The next thing I have to do is get a blood count in about 7-10 days, and see where my "Ralph" (low point, or nadir)* count is, the we get ready for round two, starting August 20th and going through the 23rd, our which will be our Thirty-Third wedding anniversary! What a way to celebrate!

(*For my German friends, I'm making a joke on the name of a Green politician in America named Ralph Nader, with whom I have very little in common politically).

And that's about all for today. I'll keep you updated on any changes in condition or plans as the days go by. Feels free to ask questions if anything I've said didn't make sense or was incomplete.

Until later,

Wednesday, July 24, 2002

The Second Day

Dave's Great Adventure
Chapter 1, Verse 2
July 24, 2002

Well, the Mexican food stayed down just fine. That particular experiment was so successful that we decided to try it again.

Yesterday I got up feeling just great; entirely normal, despite the fact that during the afternoon of Monday and into Monday night I had a bad migraine headache for which I took an unconscionable amount of medication over the course of 10 hours; only a doc would treat himself that way. Anyway, I got out of bed the next morning, ate some breakfast and then went out and did some yard work. I fertilized the grass and pulled the weeds. I'm not sure why I spend so much time on the grass. It's really looking lousy because we are told that despite being in the midst of the the worst drought in a generation, we have to water our lawns only every three days. The water commissioner says we CAN'T water any more than every three days, and only on designated days depending on our street address. On the other hand, the local homeowners covenants REQUIRE that we keep our lawns looking presentable lest our neighbors' homes plunge in value. Ahh, local low level bureaucrats. Therefore we can't water any less than every three days to save even more water (and money, since they're raising water prices this year).

But enough about the grass. After I finished my chores we had lunch and prepared to get ready for the chemo, part two. It wasn't scheduled until 3:00 yesterday so we got a late start, but the whole thing went quicker since we didn't get the videotape and warnings lecture this time. They again pre-loaded me with a bunch of dexamethasone (steroids) and the Anzemet, to prevent nausea, and away we went. The infusions, first the Cytoxan, then the Fludara, went just fine. Again, there was no stinging in the veins, no nausea, no nuthin'. I again was reading my humor book and laughing, or at least quietly chuckling, out loud.

Well, we didn't get out until about 5:00 and, knowing my wife for more than a couple of years, I knew she wasn't going to be able to find anything to cook at that late date, so we went out to eat on the way home. We came across a little Mexican joint on the way home and stopped in. I really wanted to give those anti-nausea drugs a challenge. Still, no problem.

We got home and I was feeling great. We made a few return phone calls and answered a few e-mails. I had intended to send out a message about the day's activities but before I got that done, I went out on the deck and lay in the hammock. Oops! When I again opened my eyes it was after 9:00 PM. I guess I was comfortable.

I haven't told you about my "homework" I have to do in conjunction with my chemo, have I? Everyday I take a drug that my brothers are familiar with, allopurinol. This drug prevents all the nucleic acids (DNA, RNA ) in the white cells that are being destroyed from forming crystals that can cause gout and kidney problems. So I have to drink lots of water. To add to that, after every dose of the chemo drugs I have to flush them out with even more water. I'm told to, uh, excrete 2-3 liters after each treatment. Wow. That's a bunch of "excretion." So I drink, drink, and drink. And then I excrete, excrete and excrete some more. That wasn't so bad when I started the chemo at 9:00 or so, but when I didn't finish until after 5:00, it was a problem. I was up about every 30 minutes last night wearing a path in the floor between the bed and the bathroom, doing what my doctor ordered.

And that isn't the only thing I've been told to do. Listen to this, straight out of the chemotherapy handbook, "Eating Hints." "...focus on helping you eat more higher calorie foods that emphasize protein. Recommendations might include eating or drinking more milk, cream, cheese, and cooked eggs. Other suggestions might include increasing your use of sauces and gravies, or changing your cooking methods to include more butter, margarine, or oil." Holy cow! Jackpot! This is exactly the diet I've always dreamed about but felt (slightly) guilty about following. Now I have license to eat ice cream for lunch if I want to! Wow!

Let me regress now for a bit. Some of you kind folks on this mailing list don't have the complete story of how I found about my disease and exactly what I have. I know that one of our long time friends didn't know anything about my disease until my "Adventure" e-mail showed up in her in-box (sorry, Kathy).

I have chronic lymphocytic leukemia (CLL). It's one of many forms of blood cancers, or more specifically, marrow cancers. CLL forms too many of the B-lymphocytes that fail to die on schedule, so they build up in the bloodstream and eventually collect in the liver, spleen, lymph nodes and marrow, where they crowd out the normal cells to the point that the body can no longer make the cells you need; red blood cells, platelets, bacteria fighting white cells, and so on. Eventually folks with the disease die of anemia and infection.

My dad had this disease as well and he died of it in 1981. He had it for somewhere between 5 and 9 years, but I'm not sure exactly how long. He never told us about it until he was dying, only my mom knew, and he wouldn't let her tell us. CLL is not really hereditary, though folks with a close relative with the disease have a three times as great a chance of getting it than the general population. Still, the chances are small. The disease is more common in men than women, more common in whites than blacks or Hispanics. The general background incidence is only 3/100,000 people (or about 1/30,000) so even with a relative with the disease, a person's chances of getting it are pretty small. I just happened to "beat the odds" if you will. Hey, I ought to buy more lottery tickets!

I've signed up for a study being done by the National Institutes of Health which is studying familial clusters of CLL and have sent them a family pedigree with everybody listed for three generations up and down the tree from me and my sibs, and listing what cancers any of them had. I also sent then a bunch of tubes of blood which they are using in some sort of esoteric studies of genes, etc.

I actually found out about the disease quite by accident, like most folks do. Early in the course of this disease most people don't know that anything is wrong. Then they get a routine blood test and find that their white count is too high. Actually, I wasn't getting a routine blood test, but had been feeling very ill for a couple of weeks after getting an immunization for hepatitis A, since Kathy and I go to Mexico a couple of times a year. A few days after getting the shot I started feeling sick and I got progressively weaker over the next two weeks with a mild hepatitis (caused by the shot?). Meanwhile, as we tried to find out what I had, almost all my tests were coming back normal. I didn't have HIV, mononucleosis, any of the usual hepatitis viruses, toxoplasmosis, cytomegalovirus, etc., etc. The only thing that was consistently abnormal was my white count, which was running about 18,000-20,000 (normal being about 3,000- 10,000). Finally a sophisticated test called flow cytometry (about which I know nothing) confirmed that I had a low grade CLL. Meanwhile my symptoms were abating and I had gone back to work, but now I had much more to worry about.

CLL is slowly progressive and pretty much uniformly lethal. The average length of time between diagnosis and death is about six years. There are lots of "treatments" out there for this disease, but no cure yet.

As I mentioned before, we debated a bone marrow transplant procedure but couldn't find a match among my sibs (hey, maybe I need to look up the milkman's offspring [just a joke, Mom]). So we're trying this chemo in combination with the antibody rituxamab (Rituxan) which specifically targets leukemic cells. We'll see how it does. If the first round of chemo drops my white count enough, we'll add in the Rituxan in the subsequent cycles. Those cycles will be much longer in terms of infusion time; six or so hours at a time! I'm going to get a Discman before we start those so I can listen to some music during the lengthy infusions. While we were trying to figure out what we should do for treatment, my white count was steadily rising. It went from the baseline 20,000 or so to over 60,000 in five months. CLL is considered to be aggressive if your white count doubles in a year's time. Mine tripled in five months! So I was very happy to be getting on with the treatment.

So, we go in again today for round three, the last in this month's series. I'll be taking my book in again with me, and doing some reading and drinking water (lots of it). Then we'll see what my blood counts do. The low point (or nadir; I call it my "Ralph," ) of my counts should be in about 10-14 days from the start of the treatment and that's when I'll be most susceptible to infections. If I keep feeling reasonably well and not too weak (and I haven't felt weak at all yet), then I'll try to go back to work intermittently. We'll see.

So, enough for today. For anyone interested, I'll send out another page in my "journal" tonight or tomorrow morning, describing today's (hopefully) non-events and a little more background on what we're going through.

Until later,

Monday, July 22, 2002

The Start of Dave's Great Adventure!

Dave’s Great Adventure
Chapter 1, Verse 1
July 22, 2002

(I plan to keep a bit of a log about my activities surrounding my latest adventure with the leukemia, chemo, etc. Since I'm writing it up on the computer I thought I'd share it with those of you who might be interested as well. If you'd rather not get repeated e-mails on the topic, just send me an "unsubscribe" note or just delete the notes as they show up in your in-box with all the Viagra ads, refinancing offers and porn.)

Well, it's really happening now. After months of watching my white count steadily rise and getting lots of bad news, we're finally going on the offensive. Today the chemotherapy started. But back to that in a moment.

When we found out, late last February, that I had leukemia, it was not a good time in my life. I really hadn't ever been very sick and to find out that I had a terminal illness for my first real disease process was stunning. We debated what to do. My doc (Brian Koester) suggested we consider a bone marrow transplant as that seemed to be one of the leading options to try to effect a "cure." Since I have four siblings and the chance of any one of them matching is about one in four, it seemed likely that we'd find a match. Well, it didn't work out that way. The law of averages beat me, or something. All my sibs matched each other, but none matched me. Helluvadeal! However, by then I'd learned that the chance of dying from the transplant itself was about 25% so my initial enthusiasm had waned anyway. We put the transplant on the back burner for the meanwhile. It is still a possibility in the future with an unrelated donor, if we get to the point that there are no other good options.

The next option was to try some chemotherapy combined with some new stuff. The new stuff is a monoclonal antibody derived from mice which have been sensitized to leukemic cells, specifically a particular antigen (called CD-20) on those cells. It's called Rituxan; first designed to treat lymphomas, against which it does a spectacular job, and now being tested on leukemic patients with pretty good results. We were to have started in early June but I put off the start date until today as one of our partners left the clinic and if I left at the same time we'd have to cancel many hundreds of patients who had already been scheduled. That turns out to have been a mistake. My white count at the time was about 39,000 (about 4,000 to 10,000 is normal) but by the time we got around to scheduling the first round of chemo, it had climbed to over 60,000! The problem with that is that there are too many complications using the Rituxan if the white count is over about 50,000. So we decided to proceed with combination chemotherapy for a while to get the white count down to the point that it will be safe to add in the Rituxan. That will be, hopefully, soon.

Last week I had a baseline bone marrow biopsy, a procedure I remember witnessing as a medical student and something I really didn't care to go through myself. However, the docs are much more humane that they were a couple of decades ago. My doc asked if I wanted IV sedation drugs and I told him that I didn't think so, that I was pretty tough. He looked at me and said he'd suggest I take the drugs. I was convinced and took them.

He got an IV started and they gave me a Valium-like drug with Demerol added. I kept talking to Brian as I felt him start the procedure with an injection of local anesthetic. I guess I was talking too much. At one point I remember him saying to the nurse "Give him some more Versed, please." I felt him punching through the back of my pelvis with a huge needle and digging around a bit. It wasn't pleasant, but it wasn't too bad. Then, it was all over. They sat me up, explained how it had gone and told me a little about what the chemo would be like. I was thinking, "Hey, that wasn't bad at all. I think I could have done it without the drugs." Only later did I find that I really, really wasn't all there for all the procedure. As Kathy and I talked about what had happened, there were a lot of conversations that had gone on of which I had no memory. I was talking and responding appropriately, but the memory banks weren't recording the data. I guess they didn't record the pain input either, as Kathy said I was making a lot of faces during the digging around part. I guess that's what the drug is for.

The bone marrow biopsy showed that my marrow is composed of 40% leukemic cells. That means I have enough normal cells to keep my other required functions, like making red blood cells, platelets and bacteria fighting white cells, in the normal range.

Well, last Thursday was my last day at work for up to six months. Did you guys know that I'm on an extended medical leave during my chemotherapy? Ahh, there's the silver lining! If I feel up to it, I can go in for a few days or a week or so at a time, but I don't have to for now. We'll see how I tolerate the medicines and how my marrow does with the toxins I'm getting.

Last Thursday night the nurses gave a party in my behalf as I started my leave of absence. The theme was Germany, so we had all kinds of German food; rolladen, red cabbage, sauerkraut, bratwurst, potato salad, Black Forest cake, and a bunch more. I've got great colleagues and I love them very much. There were a lot of tears for me as I start this phase of my life, but we're all very hopeful that this chemo will at least buy me some time.

So, today was the first verse of the first chapter of the chemo story. I'll be getting the stuff at least three days in a row every four weeks for up to six months. Since I'm new to this stuff, never having been on the receiving end of it, and not having given it in at least 20 years, they, thankfully, treated me pretty much like every other patient. Kathy and I watched a videotape about chemotherapy produced by the cancer treatment center at Sloan-Kettering in New York. Then the nurse went over just about every side effect that could happen and was careful to tell them all to Kathy so she could turn me in if I was trying to ignore anything.

After all our questions were answered she put in an IV. She then pre-loaded me with anti-nausea and anti-inflammatory meds (Azmetic[?] and dexamethasone) and started the infusion of the two agents, one at a time; Cytoxan followed by fludarabine.

I didn't know what to expect, because as "everybody" knows, chemo makes you very sick. I didn't feel too bad as the infusion started so I started reading a book my sister Deb had sent to me a few months ago, a compilation of humor. I had read part of it earlier, but hadn't finished it, so I thought I'd read some more today. Soon I was laughing out loud at the stuff I was reading, and that was a bit out of place in the infusion room. Most folks there are pretty quiet and not at all happy to be there. Soon the infusion was over! It felt like they'd given me a saline infusion instead of the nasty stuff I'd made the mistake of looking up in my books ("...side effects and complications may include coma and death....")

Well, we made our appointments for tomorrow and Wednesday and left. I drove home, but en route, took Kathy out to lunch at our favorite Mexican food place. That tells you kinda how normal I'm feeling so far. I hope the Mexican food doesn't come back up!

So tomorrow we go back for another round. I hope that it continues to be this easy, though I expect that the effects will be cumulative and I'll likely feel weaker as time goes by. But I'll keep everybody up-to-date with how we're (Kathy is very much involved in this, too) doing.

Until later,