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,
Dave
Thursday, July 25, 2002
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,
Dave
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,
Dave
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,
Dave
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,
Dave
Wednesday, May 8, 2002
Update on how things are going.
Hello everybody,
I just wanted to send a quick update on what's going on with me lately.
First of all, I'm really doing pretty well. I feel, for the most part, normal and am working four days a week in the clinic and am starting to do a little Labor and Delivery work again, for the meanwhile.
Many, but not all of you, know that after testing my siblings we have found that they all match another sibling but nobody matches me, so a bone marrow transplant will not be an option unless we end up looking in a national registry or something.
Plan B is to start some chemotherapy soon. In past years chemotherapy wasn't even considered until one's white count was over about 100,000 (normal being about 10,000). My white count has been steadily climbing since we found I had this disease, but is still "only" 43,000 as of last week.
But there are some new chemotherapies available, the most interesting being the new monoclonal antibodies that selectively attack the abnormal cells, sparing the normal ones. We're going to start therapy on July 22 with a combination of these monoclonal antibodies (called Rituxan) and a new chemotherapeutic drug, fludaribine, and a standard drug, cytoxan. The combination is getting some great reviews from M. D. Anderson and they've found a high percentage of complete remission, at least in relatively short (18 month) follow-up studies. It seems to work best in previously untreated patients with low-grade disease, which definition I fit perfectly.
So I'm actually looking forward to getting started on this regimen. But before we start infusing toxic substances into my bloodstream. Kathy and I are taking a trip to Germany starting next week. We'll be going to a number of places we've never been before. And thanks to upgrade coupons and frequent flier miles, we're going first/business class both ways! We're really looking forward to it.
That's about all for now. We'll keep you updated as things progress.
Later,
Dave
I just wanted to send a quick update on what's going on with me lately.
First of all, I'm really doing pretty well. I feel, for the most part, normal and am working four days a week in the clinic and am starting to do a little Labor and Delivery work again, for the meanwhile.
Many, but not all of you, know that after testing my siblings we have found that they all match another sibling but nobody matches me, so a bone marrow transplant will not be an option unless we end up looking in a national registry or something.
Plan B is to start some chemotherapy soon. In past years chemotherapy wasn't even considered until one's white count was over about 100,000 (normal being about 10,000). My white count has been steadily climbing since we found I had this disease, but is still "only" 43,000 as of last week.
But there are some new chemotherapies available, the most interesting being the new monoclonal antibodies that selectively attack the abnormal cells, sparing the normal ones. We're going to start therapy on July 22 with a combination of these monoclonal antibodies (called Rituxan) and a new chemotherapeutic drug, fludaribine, and a standard drug, cytoxan. The combination is getting some great reviews from M. D. Anderson and they've found a high percentage of complete remission, at least in relatively short (18 month) follow-up studies. It seems to work best in previously untreated patients with low-grade disease, which definition I fit perfectly.
So I'm actually looking forward to getting started on this regimen. But before we start infusing toxic substances into my bloodstream. Kathy and I are taking a trip to Germany starting next week. We'll be going to a number of places we've never been before. And thanks to upgrade coupons and frequent flier miles, we're going first/business class both ways! We're really looking forward to it.
That's about all for now. We'll keep you updated as things progress.
Later,
Dave
Thursday, May 2, 2002
CLL website
Hi Doug,
Thanks for info; I've actually been spending a fair amount of time looking at the pages, trying to decide among my options.
There seem to be a great deal of things coming up at the same time, and more in development. And, it seems that it makes no real difference in which order you try them.
I think we're going to go the Rituxin/fludarabine/cytoxan route first, as is being done at M. D. Anderson with some apparently great results.The side effects seem to be minimal for most folks. Then, if need be, there are several (actually 40-50) new monoclonal antibodies being developed. Some folks are suggesting the protocol above, with a second round of a different monoclonal antibody to "clean things up." The antisense sounds extremely promising as well. I just read about it last night for the first time. I'm going to look into it a bit more before my next appointment to see what Brian makes of it.
I'm really doing quite well now. If they didn't tell me I was sick I wouldn't know I was. I'm continuing to work a four day week and no nights. I'm actually volunteering for a few weekend days on L&D since I now haven't delivered a baby in a few months. You can't call yourself an obstetrician if you don't "get wet" occasionally, as we say in the business.
Was I correct? Did Jen win the pool? She'll be thrilled! Actually, Dan won the pool...now he knows he has a matching kidney out there!
Later,
Dave
Thanks for info; I've actually been spending a fair amount of time looking at the pages, trying to decide among my options.
There seem to be a great deal of things coming up at the same time, and more in development. And, it seems that it makes no real difference in which order you try them.
I think we're going to go the Rituxin/fludarabine/cytoxan route first, as is being done at M. D. Anderson with some apparently great results.The side effects seem to be minimal for most folks. Then, if need be, there are several (actually 40-50) new monoclonal antibodies being developed. Some folks are suggesting the protocol above, with a second round of a different monoclonal antibody to "clean things up." The antisense sounds extremely promising as well. I just read about it last night for the first time. I'm going to look into it a bit more before my next appointment to see what Brian makes of it.
I'm really doing quite well now. If they didn't tell me I was sick I wouldn't know I was. I'm continuing to work a four day week and no nights. I'm actually volunteering for a few weekend days on L&D since I now haven't delivered a baby in a few months. You can't call yourself an obstetrician if you don't "get wet" occasionally, as we say in the business.
Was I correct? Did Jen win the pool? She'll be thrilled! Actually, Dan won the pool...now he knows he has a matching kidney out there!
Later,
Dave
Wednesday, May 1, 2002
Message to Bob
Hi Bob,
Thanks for your note. I appreciate your thoughts, and I also appreciate the fact that it's hard to figure out what to say about my condition. Get well soon??
I'm actually doing pretty well right now. After the initial illness finally cleared, I began feeling normal again. I've been significantly depressed at times (probably a normal reaction) which makes it hard for me to sleep very well, but otherwise Kathy and I are both doing okay.
I'll be seeing my doc again in a couple of weeks. We're going to discuss the next step in my therapy; to treat or not to treat! He's recommended a combination of chemo and monoclonal antibodies, the newest kid on the block. They're getting about 60% complete remission rates with this new combination. We'll see if I can successfully get into the remission group with these kinds of odds, after missing out on the should-have-been sure odds of getting a donor match with a sibling! If I can't get better with that treatment, there are any number of new possibilities on the horizon, currently in clinical trials.
I guess the good news for Deb is that she's off the hook for a kidney for Dan, and Doug's on the hook!
That's all for now. Hope to see you guys in August, but I really don't know if we'll be travelling at that time; I may be undergoing my therapy during that time.
Oh, yeah. Before we start any therapy, we're going on our long-planned trip to Germany later this month--business/first class, all the way, thanks to coupons we got after last year's fiasco. We're leaving on the 16th and will be travelling to several places in northern and old east Germany where we've never been before: Quedlinburg, Goslar, Fritzlar and Hamlin. I'm really looking forward to the trip.
Dave
"Schnack, Bob" wrote:
Dave (and Kathy) -- I know I (and Kelsey) been "silent" by email about your leukemia. I just haven't known what to say, and I don't want you to think that we don't care or don't have concern. We think of you often and hope for the best results from whatever therapies you decide to go with. And as I'm sure you know, Deb, Kelsey and I would do ANYTHING we can to assist or help out. Bob
Thanks for your note. I appreciate your thoughts, and I also appreciate the fact that it's hard to figure out what to say about my condition. Get well soon??
I'm actually doing pretty well right now. After the initial illness finally cleared, I began feeling normal again. I've been significantly depressed at times (probably a normal reaction) which makes it hard for me to sleep very well, but otherwise Kathy and I are both doing okay.
I'll be seeing my doc again in a couple of weeks. We're going to discuss the next step in my therapy; to treat or not to treat! He's recommended a combination of chemo and monoclonal antibodies, the newest kid on the block. They're getting about 60% complete remission rates with this new combination. We'll see if I can successfully get into the remission group with these kinds of odds, after missing out on the should-have-been sure odds of getting a donor match with a sibling! If I can't get better with that treatment, there are any number of new possibilities on the horizon, currently in clinical trials.
I guess the good news for Deb is that she's off the hook for a kidney for Dan, and Doug's on the hook!
That's all for now. Hope to see you guys in August, but I really don't know if we'll be travelling at that time; I may be undergoing my therapy during that time.
Oh, yeah. Before we start any therapy, we're going on our long-planned trip to Germany later this month--business/first class, all the way, thanks to coupons we got after last year's fiasco. We're leaving on the 16th and will be travelling to several places in northern and old east Germany where we've never been before: Quedlinburg, Goslar, Fritzlar and Hamlin. I'm really looking forward to the trip.
Dave
"Schnack, Bob" wrote:
Dave (and Kathy) -- I know I (and Kelsey) been "silent" by email about your leukemia. I just haven't known what to say, and I don't want you to think that we don't care or don't have concern. We think of you often and hope for the best results from whatever therapies you decide to go with. And as I'm sure you know, Deb, Kelsey and I would do ANYTHING we can to assist or help out. Bob
Monday, April 29, 2002
The antigen match pool results.
And the answer is......
six!
I matched just three antigens each with my brothers and none with my sisters, so the total match was just six.
We talked to Jen today and told her that we thought she had won the pool. She wasn't thrilled; "I don't want the money," she said. I told her I'd send her the address for the Leukemia/Lymphoma Society and that they'd be happy to take her winnings.
I'll make a copy of the final report and send each of you guys a copy for future use, if needed.
That's all for now...this pool certainly ended rather anti-climactically.
Dave
six!
I matched just three antigens each with my brothers and none with my sisters, so the total match was just six.
We talked to Jen today and told her that we thought she had won the pool. She wasn't thrilled; "I don't want the money," she said. I told her I'd send her the address for the Leukemia/Lymphoma Society and that they'd be happy to take her winnings.
I'll make a copy of the final report and send each of you guys a copy for future use, if needed.
That's all for now...this pool certainly ended rather anti-climactically.
Dave
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