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
Monday, July 22, 2002
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
Sunday, April 28, 2002
No marrow match for me.
Hi Guys,
We're back in Colorado after spending about 9 days in the Dallas area with Jen and Dan and the new kiddo; a cute one she is. Jen was able to get out of the hospital in about 36 hours after her surgery with Dan pushing for an early discharge. She's doing great.
While I was gone, did any of you get any weird messages, allegedly from us? Last Friday we got a strange message from a JNorman@aol.com stating simply:
This is a new game it is my first effort you are the first I trust you would approve.
Within minutes of the time that message was sent out we received messages from a bunch of servers handling e-mails saying our message had a virus and was being quarantined, or that they could not find the address of the recipient.
We, of course, were not here and our computer was not on. We sent out nothing. Did someone steal our e-mail address somehow and send out a virus in our name?
I downloaded all the new updates from Norton and scanned the entire C drive but nothing showed up as a virus. Did any of you get anything strange from our address?
Well, the marrow match failed me! Each of my siblings has a match, but not poor old me. Well, at least now I don't have to make that horrible decision about trying the transplant with a 25% mortality!
The antigen numbers: I'll likely get the count in the next few days after I go back to work, but they have to be 0, 6 or 12. Can't be any more than 12, since no one matched me, and it has to be an even number since there were two sets of matches. What were the numbers Diane and Jen picked? Uh, everybody paid up?
Before the failed match, my options were the transplant, watchful waiting for now, or chemotherapy. Brian, in a voice mail telling me about the non-match, mentioned combination chemo with the new monoclonal antibody drug, Rituxan. I need to look up the morbidity/mortality numbers on this, as it's pretty much cutting edge stuff, but the early numbers look great. I just want to try to make sure that the "cure"won't hasten my demise! They've been studying the stuff in combination with some newer chemotherapeutic drugs at M. D. Anderson and Walter Reed. Only eight people world-wide have died of Rituxan therapy alone,out of 100,000 folks. Those numbers don't look too bad. My next meeting with Brian will be on the 16th. I'll keep you updated.I think that's all for now.
Later,
Dave
We're back in Colorado after spending about 9 days in the Dallas area with Jen and Dan and the new kiddo; a cute one she is. Jen was able to get out of the hospital in about 36 hours after her surgery with Dan pushing for an early discharge. She's doing great.
While I was gone, did any of you get any weird messages, allegedly from us? Last Friday we got a strange message from a JNorman@aol.com stating simply:
This is a new game it is my first effort you are the first I trust you would approve.
Within minutes of the time that message was sent out we received messages from a bunch of servers handling e-mails saying our message had a virus and was being quarantined, or that they could not find the address of the recipient.
We, of course, were not here and our computer was not on. We sent out nothing. Did someone steal our e-mail address somehow and send out a virus in our name?
I downloaded all the new updates from Norton and scanned the entire C drive but nothing showed up as a virus. Did any of you get anything strange from our address?
Well, the marrow match failed me! Each of my siblings has a match, but not poor old me. Well, at least now I don't have to make that horrible decision about trying the transplant with a 25% mortality!
The antigen numbers: I'll likely get the count in the next few days after I go back to work, but they have to be 0, 6 or 12. Can't be any more than 12, since no one matched me, and it has to be an even number since there were two sets of matches. What were the numbers Diane and Jen picked? Uh, everybody paid up?
Before the failed match, my options were the transplant, watchful waiting for now, or chemotherapy. Brian, in a voice mail telling me about the non-match, mentioned combination chemo with the new monoclonal antibody drug, Rituxan. I need to look up the morbidity/mortality numbers on this, as it's pretty much cutting edge stuff, but the early numbers look great. I just want to try to make sure that the "cure"won't hasten my demise! They've been studying the stuff in combination with some newer chemotherapeutic drugs at M. D. Anderson and Walter Reed. Only eight people world-wide have died of Rituxan therapy alone,out of 100,000 folks. Those numbers don't look too bad. My next meeting with Brian will be on the 16th. I'll keep you updated.I think that's all for now.
Later,
Dave
Friday, April 19, 2002
We're outta here!
Hi Guys,
Kathy and I are leaving town tonight to go to Dallas to be around for the appearance of Massaviol child #2, or "Deuce", as she's called for now. I think we may find that nickname sticking for a while even after she has a real name. Anyway, we'll be incommunicado, as least e-mail-wise, until the 28th. So I won't be able to update you guys on antigens and matches until after that date.
I'm considering my options and my enthusiam for the marrow transplant waned considerably after Brian quoted a 20-25% mortality! I was surprized (no, make that shocked!) to hear that the procedure was so dangerous. I was of the impression that not only was it a less morbid procedure than that, but that it could effect a"cure." Turns out I was mistaken on both counts. Brian mentioned that he'd just lost a patient to a marrow transplant procedure and that of the two others he'd been telling me about who were apparently doing well, one is now showing signs of recurrance of the disease.
Well, hell!
The folks at M. D. Anderson make it sound like the mini-transplant procedure is not all that bad, and in fact are doing it even in their elderly patients. (See http://www.healthtalk.com/oncology/horiz/khouri/index.html?mid=02040912f )
Amazingly, Dr. Khouri's phone number is available on the MDA web page, which is linked to this site. I think that if we're talking about transplants I may need to call him. They do 600 transplants a year, probably more than anyone else in the nation except maybe Sloan-Kettering.
But there are other options as well. As Doug said months ago, in somefolks the leukemia does not progress. Therefore one option is to do nothing. At least for now. I can always opt for therapy later if needed, but will, of course, be older and potentially more debilitated at that point.
Or I can opt for other therapy now. If I get some chemo of some sort now, it doesn't exclude the possibility of a BMT later (presuming I'm still healthy and my donor hasn't killed himself in a car wreck or something). The monoclonal antibody therapy (Rituxin), which selectively attacks and destroys leukemic cells sounds very interesting, but I haven't got much data on the morbidity/mortality of that option.
Anyway, I'll be considering these options and am scheduled to see Brian in about a month. As soon as I know results of the HLA types I'll get the data out to you guys. That's about all for now (unless I get to the computer with something else over lunch time).
Dave
Kathy and I are leaving town tonight to go to Dallas to be around for the appearance of Massaviol child #2, or "Deuce", as she's called for now. I think we may find that nickname sticking for a while even after she has a real name. Anyway, we'll be incommunicado, as least e-mail-wise, until the 28th. So I won't be able to update you guys on antigens and matches until after that date.
I'm considering my options and my enthusiam for the marrow transplant waned considerably after Brian quoted a 20-25% mortality! I was surprized (no, make that shocked!) to hear that the procedure was so dangerous. I was of the impression that not only was it a less morbid procedure than that, but that it could effect a"cure." Turns out I was mistaken on both counts. Brian mentioned that he'd just lost a patient to a marrow transplant procedure and that of the two others he'd been telling me about who were apparently doing well, one is now showing signs of recurrance of the disease.
Well, hell!
The folks at M. D. Anderson make it sound like the mini-transplant procedure is not all that bad, and in fact are doing it even in their elderly patients. (See http://www.healthtalk.com/oncology/horiz/khouri/index.html?mid=02040912f )
Amazingly, Dr. Khouri's phone number is available on the MDA web page, which is linked to this site. I think that if we're talking about transplants I may need to call him. They do 600 transplants a year, probably more than anyone else in the nation except maybe Sloan-Kettering.
But there are other options as well. As Doug said months ago, in somefolks the leukemia does not progress. Therefore one option is to do nothing. At least for now. I can always opt for therapy later if needed, but will, of course, be older and potentially more debilitated at that point.
Or I can opt for other therapy now. If I get some chemo of some sort now, it doesn't exclude the possibility of a BMT later (presuming I'm still healthy and my donor hasn't killed himself in a car wreck or something). The monoclonal antibody therapy (Rituxin), which selectively attacks and destroys leukemic cells sounds very interesting, but I haven't got much data on the morbidity/mortality of that option.
Anyway, I'll be considering these options and am scheduled to see Brian in about a month. As soon as I know results of the HLA types I'll get the data out to you guys. That's about all for now (unless I get to the computer with something else over lunch time).
Dave
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