Dave’s Great Adventure
February 21, 2003
Postscript #2
Stem Cells???
Hello again to all my friends around the world who may be interested in reading about my adventures with leukemia. A few things of interest have happened over the past few weeks so I thought I’d send out an update on our activities.
First, at the end of my last message I mentioned that I had gotten a cold, despite my extreme precautions at avoiding crowds, sick folks, doorknobs and money handling. I feared that it might develop into something worse than a common cold, like bronchitis or pneumonia, since my antibody producing cells had, for the most part, been severely damaged by the months of chemotherapy. Well, I’m happy to be able to report back to you that the cold wasn’t all that bad. It lasted about seven days, no more than a usual cold. During that time I was taking a lot of vitamin C, echinacea, the new cold medicine Zicam and zinc, for whatever they’re worth, but they seem to have helped. I’m becoming a believer in some of these homeopathic remedies.
I told you last time that we were trying to collect some of my stem cells while I was in my “fantastic remission” for use in a possible future transplant. Now, my employer/ insurance company denied my doc’s request to have this procedure set up, citing the fact that they didn’t feel it was an “evidence based” treatment. That led to a lot of things happening.
I was called by a person who worked on my request, the very same person who signed the letter denying the treatment, and she suggested that I appeal the decision immediately! I found this to be a bit curious and asked her why she recommended this. She said that “given my circumstances” that it might be reversed. She didn’t explain what she meant by that and didn’t say the decision would, in fact, be overturned, but it gave me the definite impression that if I pushed the issue, the company was willing to give in. So I immediately appealed the decision and proceeded with plans for harvesting my stem cells. The plans, unfortunately included getting another bone marrow biopsy and a whole bunch of blood tests. I didn’t count on another bone marrow biopsy!
But I got the blood drawn for all the tests and endured yet another bone marrow biopsy, which this time will include testing the chromosomes on my marrow cells. We set up the “apheresis” to collect the stem cells for last Monday through about Wednesday of this week, all the time expecting that the insurance company was going to come through for me. I also had to start giving myself more shots of Neupogen, the same stuff I was injecting last October when my white count dropped to 1,000. This time, however, I had to give myself three times as much each day.. The five day course of the medication cost about $4,000! It is used to force stem cells out of my marrow into the bloodstream where they can be collected by the “apheresis” machine, basically a centrifuge which sorts cells by their size and weight.
While we were doing all this I got a long letter from the company explaining, again, why they were turning down our request. That was an unexpected surprise, as I really thought they were going to help me. In addition, by now I found out that my guess that the procedure would cost about $6,000 or so was way off. In fact, it’s more like $16,000! The letter explained that I had one more appeal that I could use if I wanted to. Well, I wanted to! Otherwise I told Kathy that I’d have to put her out on the street selling muffins and lemonade to help pay for the collection. I’ll get back to that last appeal later.
I started giving myself the Neupogen last week and immediately noticed that the side effects were much more noticeable than with the smaller dose I had used earlier. There was a lot of weakness, fatigue, and bone pain as the marrow started cranking out lots of white cells and, hopefully, stem cells. My bones actually throbbed in pain when I moved around very much. There’s always something new, isn’t there? I was, however, able to work through the side effects for the most part. They didn’t really get bad until almost a week into the therapy. By then I was starting the apheresis.
I had decided that I was going to get the stem cells collected whether the company paid for it or not. I needed to collect them now, not later when my blood was again filled with leukemic cells. So, we went ahead with the plans for the apheresis, at $4,000 a day. Yes, $4,000 a day! I was scheduled to start last Monday.
At about 6:45 in the morning we showed up at the hospital across the street from where I work; it’s called Presbyterian-Saint Luke’s Hospital. We went to the apheresis room where this contraption is located. The machine is about four feet tall, four feet wide and about three feet deep. It’s an impressive bit of equipment. The medical techs drew some blood for various tests and then began hooking me up to the tubing. Now, this is nothing to be taken lightly! They put in two very large intravenous needles, one in each of my arms. One to take blood out and send it to the machine, the other to put the processed blood, from which the stem cells had been extracted, back in my other arm. Since they had bare needles in my arms, not the plastic “intracath” tubing that I’m used to, I could not move my arms very much at all. If I did, the tip of the needle could move and penetrate my vein! The procedure takes about four hours!
So, I was relatively immobile. The problem was, they had told me to drink a lot of fluids before the procedure so they could get the access lines in my veins. Well, what happens after you drink a lot? I have had experience with this during my chemotherapy sessions, and perhaps you have had experience with this after too much beer or lemonade. Of course, after drinking a lot of fluids, I had to “excrete” a lot of fluids. But my hands were not available to help myself with this problem. And I couldn’t move around very much. And the folks running the machine were not nurses but medical techs. What to do? Well, they said they would step out while Kathy helped me with this “problem.” So Kathy got to “play nurse” with me, undoing my pants and helping me point “Rover” in the right direction. We did okay with this process, but I’d hydrated myself so well that an hour later I needed to do it again! So Kathy again came to my aid.
I’d been on the machine about three and a half hours when one of the techs came in and said we’d have to stop the collection. It seems that one of the tests we had done that morning showed that my stem cell count was too low to be collecting them! There is a test which I’d never heard of before, called a CD-34 assay, which measures the level of stem cells in one’s blood. The level should be about 10 or greater to be doing the collection efficiently. My stem cells were only at 3. Much too low. The doc who was running the show that day ( my doc was skiing that morning; there was great fresh snow in the mountains!) said I should keep giving myself the Neupogen shots and we would try again the next day, but we would get the CD-34 test results back before we put the machinery in action. That would keep us from using up $4,000 of machine time for nothing. The Rocky Mountain Cancer Center, where the “transplanters” like my doc, Jeff Matous work, gave me another day’s worth of Neupogen (about $1,000 worth) for free and we went home, disappointed.
The next day we again showed up at about 6:45 but instead of going straight to the apheresis machine we did a CD-34 assay. It takes about three hours to get the test back so we didn’t find out until after ten that it had gone up, but only to 5. My doc, who had returned from skiing, was encouraged by the rise and said we should keep giving the Neupogen in hopes of getting up to 10. So they gave me another $1,000 worth of Neupogen and we went home again. I decided that if I wasn’t going to be on the machine I might as well be working. I went by the my clinic and asked if they needed any help and of course they did, so I added myself into the afternoon schedule, then went home to change clothes and take a nap.
I slept for just a short time, but when I awoke to go to work for the afternoon, I felt just awful. The Neupogen effects were really kicking in. My bones, especially my breastbone, were hurting much more, and I felt extremely tired. But I went in to work, and though we had a full clinic, I managed to get through it. But I was exhausted when I got home.
The next day was a big day. We were to be at the hospital at the usual time, while it was still dark. We had to get the blood drawn and then wait the usual three hours to find out the results. Meanwhile, a committee that was going to evaluate my final appeal on whether the company would help pay for the collection was meeting a couple of hours later, across town. I had written a couple of letters to the committee explaining why I thought they should pay for it, but I had been told I could also attend the meeting if I wanted to. I really didn’t want to. I was feeling bad and didn’t want to answer questions at a committee meeting, not knowing if they’d be hostile or friendly, but I figured I should be there so I could defend my position as to why I thought the company should pay.
So after giving up another blood sample, we drove across town with my letters and some medical literature in support of the collection. I went to the clerk's office and explained that I really didn’t feel well, but I thought it would be best for me to at least be there when the meeting was held. She agreed and told Kathy and me where to sit, near the conference room. A few minutes later she invited me into the room to meet the committee. I didn’t know any of the folks there, but I recognized their names as two Kaiser Permanente doctors and an administrator. I was prepared to answer questions, but was taken by surprise when they told me to make my “presentation.” I hadn’t planned on making a presentation.
But I started talking, telling them what I had learned about leukemia, what the possible treatments were, why there was no real “standard” treatment, and why I thought collecting my stem cells now was as reasonable a plan of treatment as any other. It didn’t hurt my case at all that I seemed to know a whole lot more about leukemia and its treatment than they did. I made my case as best I could and then answered their questions. They told me that they would have an answer for me in about five days. I left, not knowing what they would decide, but I thought that they seemed open to the possibility of doing the stem cell collection. We went back across town, back to the hospital to check on my blood test. It had gone up again, but only to 6. They said to keep going. I got another $1,000 worth of Neupogen and went home and went to bed.
The next day, Thursday, Kathy and I again went to the hospital, which is in downtown Denver, to get my CD-34 test again. By then my doc had decided that if it went up at all we’d start collecting again, so Kathy and I waited around the hospital until the results were back, expecting that I‘d be on the machine before long. Bad news. It went down! To just 3 again.
My doc now decided that my bone marrow was just too beat up to make stem cells right now, even though it had been four months since my last chemotherapy, so we’d have to postpone the collection for a couple of months or so. Man, that was a disappointment for several reasons. First, I’d wasted four days hoping to get the cells collected. Secondly, though I hadn’t yet had to pay anything, we had used up about $7,000 worth of Neupogen, $4,000 of apheresis machine time, plus we’d been doing blood tests every day which I hadn’t yet paid for and I had heard I was probably going to have to pay for the bone marrow biopsy too. We could potentially be out thousands of dollars and we hadn’t really accomplished anything except gathering the very few cells we had gotten on the first day. What helped a lot, however, was that the docs said they would waive their fees for me, the hospital told me that since I didn’t have insurance for this they would “only” charge me $2,000 a day for the apheresis procedure, and that the clinic had given me three doses of the Neupogen for free, about $3,000 worth. I didn’t know what all the blood tests would cost, however.
That brings us up to today. I went back to work today, still feeling pretty tired from all the Neupogen I’d been giving myself. We had a relatively light day so I did okay despite my fatigue. The phone rang at about 10:30. It was the clerk from the appeals committee. She said that the committee had approved my request to have the company pay for the stem cell collection after all! That was great news. However, the bad news is that I don’t have any stem cells to collect right now.
So, I have been in contact with the transplant clinic again. We plan to try the apheresis again in two or three months, when my marrow will presumably have more stem cells. But we have to start from the beginning. I’ll have to have another bone marrow biopsy, all the lab tests will need to be done again, and I’ll have to start injecting another $4,000 worth of Neupogen. It’s just incredible to think that each injection is almost $1,000.
But now we have a plan in place, and I’ll have help in paying for the process. I don’t mind the wait too much, as long I don’t somehow relapse during that time. And that is not expected to happen. We’ll keep checking my white count each month until the next time we try to harvest the cells to see what they do. Oh yeah, I mentioned in my last letter that my white count had dropped down some more, unexpectedly, to around 2,200 or so. Well, after seven days, and $7,000 worth of Neupogen, my white count is up to 27,000! (Normal is up to about 10,000 or a bit more) I guess I’m not at too much risk of infection right now.
Well, that’s our latest adventure. And it’s plenty long enough so I’ll close while I still have a few readers who haven't drifted off to sleep. But, as Arnold Schwartzenegger says, in the movie “The Terminator,” “I’ll be back!”
Until later,
Dave
Friday, February 21, 2003
Sunday, February 2, 2003
Postscript Number One; Stem Cell Collection?
Dave’s Great Adventure
February 2, 2003
Postscript #1
Happy New Year! Yeah, I know, it’s a very late greeting for this year, but in the last letter in this long journal series I wished you Merry Christmas, just after I found out that my bone marrow biopsy was completely normal. For weeks I’ve been wanting to get another letter out to all my friends who have been following my progress, but I’ve just been too busy to sit down and write. I have a lot of news to pass on to you however, so here goes.
First, I am doing extremely well. I have recovered just about all my strength since my last round of chemotherapy in October. I get tired when I’m too active, but I’m not sure whether it’s a residual chemotherapy effect, the fact that I’m out of shape from my months of inactivity, or just that I’ve gotten lazy over the past six months. I also have gotten over just about all of the mental “fuzzies” from which I was suffering for so long. That’s a good thing, since I’m going back to work, and in fact have been working part time throughout January.
I had a blood count done a couple of weeks ago, and was quite surprised to find that my white count had dropped again. It had been three months since my last round of chemotherapy so I expected my counts to be slowly rising, so the drop, to 2,200, caught me quite by surprise. My doc tells me that my count may “bounce around a bit” for several months. I’ll be getting another count in about ten more days. We’ll see what the count does by then. Fortunately my red cell and platelet counts are remaining pretty much in the normal range.
I mentioned in my last letter that we were investigating the possibility of collecting some of my own “stem cells” now that I’m in complete remission, to be frozen and kept for a possible transplant in the future when I might need it. Stem cells are the cells we have in our marrow, and in small numbers in our bloodstream, which produce all of the cells in our blood; the red cells, lymphocytes, neutrophils, platelets and all the others. I met with a cancer specialist, a “transplanter” named Jeff Matous, who spent a lot of time with me talking about my disease and possible plans for the future. He kept talking about my “fantastic” remission (good words to hear, to be sure) but that we had no long term data on how long it might last. He said he thought it would last a long time. I asked, “How long; three months, a year, three years, six years?” He smiled and said “Yeah.” He said that the disease is considered incurable and a relapse is expected, but we can’t predict when. He also went into incredible details of the disease, discussing the origins of the disease at the level of the chromosomes, things I didn’t know despite the fact that I’m a doc (albeit a simple gynecologist), and have read lots of material on leukemia since I found out I have it. He also went into the possible treatments. There is no consensus on how to treat this disease. The treatment seems to vary from one part of the country to another. And it also changes from year to year. The treatment, Jeff said, is “a moving target.”
He said that the “current “ therapy changes so fast that if I relapse in three months, he would know what to do, but if it happened in two or three years, he didn’t know what they would be doing. That brought up the subject of stem cell transplants. They are not commonly done for chronic lymphocytic leukemia, the kind I have, though they’re done for certain lymphomas and other cancers. But, they have been done, and he recommended that we collect the cells while I am in this “fantastic remission” (while my marrow would be made up almost entirely of normal cells and not the leukemic cells which made up 40% of the marrow cells before we stated the chemotherapy).
The problem now is that, as I said, there is no consensus of what should be the standard treatment for the disease. So when my doc, Brian Koester, approached my insurance company (the company for which I also work!) about this therapy they turned down the request. The treatment, they said, is not “evidence based.” In other words, it’s considered experimental, and therefore not covered by the health insurance. Brian called around the country to other transplant centers to get advice, but really couldn’t get a lot of support for the process at the present, as most centers are doing the mini-bone marrow transplants with donor marrow these days (I described this process a long time ago in my early letters).
So, what to do? Well, when you have a lethal disease like I do, you don’t want to close any doors that might be helpful to you in the future, even if the current thought on the matter is that it’s not one of the best treatments. Remember, the treatment seems to change from year to year, and who knows what they will be doing in two or three years. So, I’m thinking about paying for the stem cell harvesting and storage myself. I haven’t gotten a firm fix on the price of collecting the cells, but I think it’s in the range of $6,000-8,000. Now, that would be the easy, “cheap” part. If/when I might need the transplant, the question remains, would my insurance fund the transplant? That would be more in the range of $100,000 or more. But hey, what are savings accounts for, anyway? If you have a choice between dying or retiring, well, there really is no question about what you would do, is there?
I mentioned that I’d been working part time in January, a day or two per week, as I regain my strength. I’ve done pretty well. I found that the female anatomy hadn’t evolved very much over the last six months and I pretty much recognized all the parts. And since my “fuzzies” are gone, I didn’t prescribe any WD-40 for vaginal infections! I start working four days a week on Monday, with a couple of day shifts on Labor and Delivery (als Geburtshilfer) each month, on weekends. Since I found out I had leukemia, I stopped doing nights shifts, as members of our group are permitted to do if they are over 55 years of age. And, I wrote to the chiefs of our department asking if I could reduce my scope of practice, and they agreed to let me work primarily in the clinic for the remainder of my time with the group. I’m going to stop doing surgeries (except for caesarean sections [Kaiserschnitt]) and I’ll no longer work emergency room duty. Narrowing my practice down will simplify my life as I close in on a retirement at some time in the fairly near future.
When I went back to work recently, I had some interesting news. I’m getting sued for medical negligence. Just the kind of news I needed to hear right about now! I really can’t say much, but a patient claims I removed her uterus (Gebaermutter) without her permission! Yeah, right! I suppose getting this resolved will take many months to a few years, as slow as the legal system works here in America.
I have some sad news, also. A few months ago I mentioned a friend of the family, Cindy, who, with her brother Bobby, grew up as friends of our kids in El Paso. Cindy had written to say that since I had to “excrete” so much and so often during my chemotherapy that I should have more sympathy for her now. She’s the girl whom I said had the “teeny, weeny bladder,” who had to stop for bathroom breaks every thirty minutes when we were traveling through Europe during her visits with us there. Well, the very week that I got the wonderful news about my bone marrow biopsy being completely normal, Cindy and Bob got word that their dad, an orthopedic surgeon in Abilene, Texas, had lymphoma! When I heard about this, Cindy and I exchanged some e-mails and I told her I thought her dad would probably get the same medicine I had gotten, the Rituxan, over a few months, and then probably be back to work after his therapy. I was stunned to find out that his lymphoma was so aggressive that it began shutting down his organ systems very rapidly. After several surgeries, chemotherapy and dialysis, he died last week! That was just five or six weeks after he was diagnosed! I just feel so bad for those kids. They lost their mom to breast cancer a few years ago, and now they’ve lost their father. He was sixty, just getting to the age where he could think about retiring and enjoying life, and now he’s gone. It happened so incredibly fast.
Along the same line, my boss was out horseback riding a couple of weeks ago when he heard another horse galloping up from behind, with the rider yelling “Whoa!” He turned around to see the horse throw the rider, who landed on his face. The man suffered severe head injuries and is essentially brain dead. He had just retired from a major investing firm here in Denver, and now he’s gone. He’ll never enjoy the retirement he was looking forward to.
Life is so incredibly fragile and unpredictable. We all think we know where we are going in life, but there are unexpected surprises around every corner. Like I remember hearing a few months ago, “If you want to make God laugh, tell him your plans.” We all know we’re going to die, but we really don’t believe it. We see death on the distant horizon, but as we walk slowly toward that horizon, we never think we’ll reach it, as it always seems so far away.
I think God has kindly given me a two minute warning, if I can use a football analogy. I now know that my horizon is approaching faster that I thought, and so I can make different plans than I originally might have. I can plan my life now to more fully enjoy the time I have left; to work less and spend more time with my family and friends. My time now means so much more to me than any money I might be making. As we hear so often, on one’s deathbed nobody ever wishes they had spent more time at the office.
This knowledge also makes me live my life a bit differently. The week I got the great news about my normal bone marrow biopsy we went out to eat a fancy dinner with our friends Lou and Joan. On the way home it was snowing a bit and the highway was slushy. I was driving like I usually do (probably too fast) when it occurred to me that it would be too ironic if I were to beat the cancer only to kill myself in a careless auto accident. So I slowed down for the drive home. Though I must admit that I haven’t stopped treating our interstate highways like the beloved autobahns of Germany when conditions permit. On the way back from Oklahoma last week we spent a fair amount of time at 90 MPH (about 140 KPH) when the traffic was light and the visibility good. Though that’s not really fast by autobahn standards.
One reason I’ve been too busy to get this letter written is that we just returned from two back-to-back visits to Oklahoma where we helped Kathy’s parents move from their home into an apartment complex which provides around the clock help. On the return trip, after our second trip in a week, I was reading a newspaper and found a very interesting article. It seems that the Veteran’s Administration has found a connection between the exposure to the notorious herbicide, Agent Orange, which was widely used in Vietnam, and the development of chronic lymphocytic leukemia. The stuff was used so much that all Vietnam veterans are presumed to have been exposed. In fact, my unit, the Americal Division, was using this herbicide long after it was supposed to have been banned. What this new finding means is that I will be eligible for medical care at the VA hospitals for this disease, if I need it, and I will probably be eligible for some disability compensation. The regulations covering this are being written now, but won’t be ready for about a year yet. If I were to get a disability payment, it might make it easier to retire a little sooner than I presently would be able to do. We’ll see how this develops.
As I was getting my thoughts together for this letter, I was going to mention that I happily hadn’t gotten a cold yet this winter. I have been very careful about washing my hands, avoiding sick people, and staying away from crowds. This was especially important since my white count is still so low. Well, I can’t tell you that now. After working in the clinic last Tuesday, I woke up Wednesday feeling a little ill, and over the last few days it has developed into a real cold. I feel miserable. But more than how I feel, I worry what it might develop into. We have just completed the destruction of most of my B lymphocytes, the ones that create antibodies, so it may be very difficult for me to get over what generally would be a very minor problem. I’m now into day four of this illness and it’s slowly getting worse. This will be a new experience for me. I hadn’t been sick since we started the chemotherapy (except from the chemotherapy itself).
I think I’ve rambled on long enough for now. I want to thank you folks out there for thinking about me. My thanks to my German friends for the custom calendar and CD, to Kent in Lubbock for the CDs of his favorite music, to the Finleys for the jokes and messages, and to everyone else I’ve been hearing from. I really appreciate your thoughts. I’ll close for now but I’ll get another update out when anything else of interest happens.
Until later,
Dave
February 2, 2003
Postscript #1
Happy New Year! Yeah, I know, it’s a very late greeting for this year, but in the last letter in this long journal series I wished you Merry Christmas, just after I found out that my bone marrow biopsy was completely normal. For weeks I’ve been wanting to get another letter out to all my friends who have been following my progress, but I’ve just been too busy to sit down and write. I have a lot of news to pass on to you however, so here goes.
First, I am doing extremely well. I have recovered just about all my strength since my last round of chemotherapy in October. I get tired when I’m too active, but I’m not sure whether it’s a residual chemotherapy effect, the fact that I’m out of shape from my months of inactivity, or just that I’ve gotten lazy over the past six months. I also have gotten over just about all of the mental “fuzzies” from which I was suffering for so long. That’s a good thing, since I’m going back to work, and in fact have been working part time throughout January.
I had a blood count done a couple of weeks ago, and was quite surprised to find that my white count had dropped again. It had been three months since my last round of chemotherapy so I expected my counts to be slowly rising, so the drop, to 2,200, caught me quite by surprise. My doc tells me that my count may “bounce around a bit” for several months. I’ll be getting another count in about ten more days. We’ll see what the count does by then. Fortunately my red cell and platelet counts are remaining pretty much in the normal range.
I mentioned in my last letter that we were investigating the possibility of collecting some of my own “stem cells” now that I’m in complete remission, to be frozen and kept for a possible transplant in the future when I might need it. Stem cells are the cells we have in our marrow, and in small numbers in our bloodstream, which produce all of the cells in our blood; the red cells, lymphocytes, neutrophils, platelets and all the others. I met with a cancer specialist, a “transplanter” named Jeff Matous, who spent a lot of time with me talking about my disease and possible plans for the future. He kept talking about my “fantastic” remission (good words to hear, to be sure) but that we had no long term data on how long it might last. He said he thought it would last a long time. I asked, “How long; three months, a year, three years, six years?” He smiled and said “Yeah.” He said that the disease is considered incurable and a relapse is expected, but we can’t predict when. He also went into incredible details of the disease, discussing the origins of the disease at the level of the chromosomes, things I didn’t know despite the fact that I’m a doc (albeit a simple gynecologist), and have read lots of material on leukemia since I found out I have it. He also went into the possible treatments. There is no consensus on how to treat this disease. The treatment seems to vary from one part of the country to another. And it also changes from year to year. The treatment, Jeff said, is “a moving target.”
He said that the “current “ therapy changes so fast that if I relapse in three months, he would know what to do, but if it happened in two or three years, he didn’t know what they would be doing. That brought up the subject of stem cell transplants. They are not commonly done for chronic lymphocytic leukemia, the kind I have, though they’re done for certain lymphomas and other cancers. But, they have been done, and he recommended that we collect the cells while I am in this “fantastic remission” (while my marrow would be made up almost entirely of normal cells and not the leukemic cells which made up 40% of the marrow cells before we stated the chemotherapy).
The problem now is that, as I said, there is no consensus of what should be the standard treatment for the disease. So when my doc, Brian Koester, approached my insurance company (the company for which I also work!) about this therapy they turned down the request. The treatment, they said, is not “evidence based.” In other words, it’s considered experimental, and therefore not covered by the health insurance. Brian called around the country to other transplant centers to get advice, but really couldn’t get a lot of support for the process at the present, as most centers are doing the mini-bone marrow transplants with donor marrow these days (I described this process a long time ago in my early letters).
So, what to do? Well, when you have a lethal disease like I do, you don’t want to close any doors that might be helpful to you in the future, even if the current thought on the matter is that it’s not one of the best treatments. Remember, the treatment seems to change from year to year, and who knows what they will be doing in two or three years. So, I’m thinking about paying for the stem cell harvesting and storage myself. I haven’t gotten a firm fix on the price of collecting the cells, but I think it’s in the range of $6,000-8,000. Now, that would be the easy, “cheap” part. If/when I might need the transplant, the question remains, would my insurance fund the transplant? That would be more in the range of $100,000 or more. But hey, what are savings accounts for, anyway? If you have a choice between dying or retiring, well, there really is no question about what you would do, is there?
I mentioned that I’d been working part time in January, a day or two per week, as I regain my strength. I’ve done pretty well. I found that the female anatomy hadn’t evolved very much over the last six months and I pretty much recognized all the parts. And since my “fuzzies” are gone, I didn’t prescribe any WD-40 for vaginal infections! I start working four days a week on Monday, with a couple of day shifts on Labor and Delivery (als Geburtshilfer) each month, on weekends. Since I found out I had leukemia, I stopped doing nights shifts, as members of our group are permitted to do if they are over 55 years of age. And, I wrote to the chiefs of our department asking if I could reduce my scope of practice, and they agreed to let me work primarily in the clinic for the remainder of my time with the group. I’m going to stop doing surgeries (except for caesarean sections [Kaiserschnitt]) and I’ll no longer work emergency room duty. Narrowing my practice down will simplify my life as I close in on a retirement at some time in the fairly near future.
When I went back to work recently, I had some interesting news. I’m getting sued for medical negligence. Just the kind of news I needed to hear right about now! I really can’t say much, but a patient claims I removed her uterus (Gebaermutter) without her permission! Yeah, right! I suppose getting this resolved will take many months to a few years, as slow as the legal system works here in America.
I have some sad news, also. A few months ago I mentioned a friend of the family, Cindy, who, with her brother Bobby, grew up as friends of our kids in El Paso. Cindy had written to say that since I had to “excrete” so much and so often during my chemotherapy that I should have more sympathy for her now. She’s the girl whom I said had the “teeny, weeny bladder,” who had to stop for bathroom breaks every thirty minutes when we were traveling through Europe during her visits with us there. Well, the very week that I got the wonderful news about my bone marrow biopsy being completely normal, Cindy and Bob got word that their dad, an orthopedic surgeon in Abilene, Texas, had lymphoma! When I heard about this, Cindy and I exchanged some e-mails and I told her I thought her dad would probably get the same medicine I had gotten, the Rituxan, over a few months, and then probably be back to work after his therapy. I was stunned to find out that his lymphoma was so aggressive that it began shutting down his organ systems very rapidly. After several surgeries, chemotherapy and dialysis, he died last week! That was just five or six weeks after he was diagnosed! I just feel so bad for those kids. They lost their mom to breast cancer a few years ago, and now they’ve lost their father. He was sixty, just getting to the age where he could think about retiring and enjoying life, and now he’s gone. It happened so incredibly fast.
Along the same line, my boss was out horseback riding a couple of weeks ago when he heard another horse galloping up from behind, with the rider yelling “Whoa!” He turned around to see the horse throw the rider, who landed on his face. The man suffered severe head injuries and is essentially brain dead. He had just retired from a major investing firm here in Denver, and now he’s gone. He’ll never enjoy the retirement he was looking forward to.
Life is so incredibly fragile and unpredictable. We all think we know where we are going in life, but there are unexpected surprises around every corner. Like I remember hearing a few months ago, “If you want to make God laugh, tell him your plans.” We all know we’re going to die, but we really don’t believe it. We see death on the distant horizon, but as we walk slowly toward that horizon, we never think we’ll reach it, as it always seems so far away.
I think God has kindly given me a two minute warning, if I can use a football analogy. I now know that my horizon is approaching faster that I thought, and so I can make different plans than I originally might have. I can plan my life now to more fully enjoy the time I have left; to work less and spend more time with my family and friends. My time now means so much more to me than any money I might be making. As we hear so often, on one’s deathbed nobody ever wishes they had spent more time at the office.
This knowledge also makes me live my life a bit differently. The week I got the great news about my normal bone marrow biopsy we went out to eat a fancy dinner with our friends Lou and Joan. On the way home it was snowing a bit and the highway was slushy. I was driving like I usually do (probably too fast) when it occurred to me that it would be too ironic if I were to beat the cancer only to kill myself in a careless auto accident. So I slowed down for the drive home. Though I must admit that I haven’t stopped treating our interstate highways like the beloved autobahns of Germany when conditions permit. On the way back from Oklahoma last week we spent a fair amount of time at 90 MPH (about 140 KPH) when the traffic was light and the visibility good. Though that’s not really fast by autobahn standards.
One reason I’ve been too busy to get this letter written is that we just returned from two back-to-back visits to Oklahoma where we helped Kathy’s parents move from their home into an apartment complex which provides around the clock help. On the return trip, after our second trip in a week, I was reading a newspaper and found a very interesting article. It seems that the Veteran’s Administration has found a connection between the exposure to the notorious herbicide, Agent Orange, which was widely used in Vietnam, and the development of chronic lymphocytic leukemia. The stuff was used so much that all Vietnam veterans are presumed to have been exposed. In fact, my unit, the Americal Division, was using this herbicide long after it was supposed to have been banned. What this new finding means is that I will be eligible for medical care at the VA hospitals for this disease, if I need it, and I will probably be eligible for some disability compensation. The regulations covering this are being written now, but won’t be ready for about a year yet. If I were to get a disability payment, it might make it easier to retire a little sooner than I presently would be able to do. We’ll see how this develops.
As I was getting my thoughts together for this letter, I was going to mention that I happily hadn’t gotten a cold yet this winter. I have been very careful about washing my hands, avoiding sick people, and staying away from crowds. This was especially important since my white count is still so low. Well, I can’t tell you that now. After working in the clinic last Tuesday, I woke up Wednesday feeling a little ill, and over the last few days it has developed into a real cold. I feel miserable. But more than how I feel, I worry what it might develop into. We have just completed the destruction of most of my B lymphocytes, the ones that create antibodies, so it may be very difficult for me to get over what generally would be a very minor problem. I’m now into day four of this illness and it’s slowly getting worse. This will be a new experience for me. I hadn’t been sick since we started the chemotherapy (except from the chemotherapy itself).
I think I’ve rambled on long enough for now. I want to thank you folks out there for thinking about me. My thanks to my German friends for the custom calendar and CD, to Kent in Lubbock for the CDs of his favorite music, to the Finleys for the jokes and messages, and to everyone else I’ve been hearing from. I really appreciate your thoughts. I’ll close for now but I’ll get another update out when anything else of interest happens.
Until later,
Dave
Thursday, December 19, 2002
Complete Remission!
Dave’s Great Adventure
Chapter 5, Verse 5
December 18, 2002
Merry Christmas!!!
What a wonderful, wonderful Christmas present! I just got a phone call which had great news, news as good as anyone could hope for. My doc called and told me that my bone marrow biopsy was normal. They did a couple of tests on the marrow sample, and in neither could they find any leukemic cells! That’s really all the more amazing as just six months ago my marrow was comprised of 40% leukemic cells. Now there are none they can find. They also looked for telltale antigens on the cells and couldn’t find evidence of abnormal cells. That’s just excellent news!!
I couldn’t have asked for any more out of the therapy that we did on me over the past six months. I’m so grateful that the new medication (the Rituxan) was available and that my doc was willing to try the new combination therapy on me. Remember, I was the very first patient he tried it on. I also have to be grateful that my marrow responded so well, and so rapidly. At first I was disappointed when we had to stop the therapy after only four cycles (out of six planned) but four cycles were obviously all my marrow needed, at least for now.
So now we wait. I’m in a complete remission. Remember, however, remission doesn’t mean “cure,“ but rather means “no evidence of disease.“ I’ll be getting blood counts every month for at least the next six months to a year and will be seeing my doc about every three months for the next year. As long as my blood counts remain normal I’ll be in remission. How long will that last? Well, as my doc said last summer when we started the therapy, “We don’t know because we’re ‘writing the book’ right now.” In other words, there is no long term follow-up on this therapy to see how long the remissions last, or if, perhaps they are permanent. If they are permanent, that could be the “C” word (I hate to say “cure” because there really isn’t one yet, but this new stuff may be the answer...time will tell). I’m one of the pioneers, if you will, of this new therapy. And a very happy pioneer to be sure! There can’t be any better Christmas present than to be told that your cancer is gone!
Since I’m feeling better all the time, the only problems that remain are my suppressed immune system and my slowly improving memory problems. I’ll be on antibiotics for another nine months or so against certain bacteria (pneumocystis carinii, I believe they’re called) which can cause pneumonia in immunocompromised patients, I’ll also be at risk for viruses like the flu and colds, etc., for about that length of time. I’m going to continue to try to avoid anyone who is obviously sick and will continue to wash my hands compulsively throughout the day. I did get a flu immunization, but there is question about whether or not my immune system will be able to create antibodies (antikoerper) against the flu virus, as it has been so battered by the chemotherapy and will remain less than completely effective for many months.
I’ll be going back to work for a few days next month and then probably will be back full time in February. The nurses who put patients in the rooms for me will try to make sure that I am not going to see anyone who is obviously ill with a cough or cold since I will be at risk of infections for a long time.
One other step we’re still working on is to see if it would be reasonable to collect my stem cells at this time, for use later if/when I relapse. If we’re going to do it at all, this is an excellent time, as my marrow seems clean of malignant cells. As Brian said today when I talked with him, “It looks like we’ve got a pretty clean product now.“ Product? I guess that’s how oncologists talk about marrow. Anyway, Brian is in contact with the “transplanters” to get their opinions about an “autotransplant,” or a possible transplant using my own stem cells at some time in the future. It has been done many times in the past and the advantage is that there is no risk of the “graft versus host” reaction (in which the antibodies of the normal, immunocompetent transplanted cells attack the weakened, immunocompromised cells of the patient). This reaction is what causes much of the 25% death rate with marrow transplants. If we’re going to collect them, I’d like to get it scheduled before I start back to work. I really would like to collect the cells...it would be like having an insurance policy against a relapse. And it only costs about $200 a year to store them. Of course, the collection costs would be much greater.
So, what are we doing now, other than celebrating our good fortune? Our son Jonathan, who lives in El Paso, recently visited us with his girlfriend, Natalie, whom you heard about in our report from Las Vegas last August. She hadn’t been to Colorado before so we took her to the mountains to visit the snow and did a few other “Colorado“ things. Jon wanted to visit the new football stadium where the Broncos play so we also took a tour of the new “Invesco Field at Mile High,” a name only someone who works at Invesco (an investment firm) could like, as it’s named after a financial firm rather than any sports team or sports person!
And next week we’re going to have all our kids and grandkids here for Christmas! What a great way to celebrate this wonderful news! We really look forward to having all the family here.
And now for the bad news...remember when I first started my chemotherapy and the instructions I was given to get more calories, more fats in my diets, more gravies, more of every thing? Remember when I would go out for frozen custard every day? Well, now I have to go back on a diet and start watching my cholesterol again!! When I had active leukemia I really didn’t care about my cholesterol level, since it was so much less important than the leukemia. That’s no longer the case. You know, if it’s not one thing, it’s another. Of course, I’d much rather be watching my cholesterol than my leukemia!
December 19, 2002
We went out last night to have a celebratory dinner with our friends, Lou and Joan, to mark the occasion of getting evidence of my total remission. So, I didn’t get this letter out. But I’ll finish it up and get it on its way to you.
Last night Joan, who has faithfully been sending cards to me just about every day since I started the chemotherapy, said she guesses she’ll stop mailing the cards now. I guess that’s fair. What I’m going to do is start mailing cards to one of my colleagues. Those of you who have been getting my “journal” since the beginning may remember that I mentioned a colleague who was battling a recurrence of her breast cancer. She’s the one who warned me about the “fuzzies” I would get after each round, when I wouldn’t be able to think clearly. She also worked in my place in the clinic last August while I was out of the office. Well, she has gotten some more bad news. She has a large number of metastases of breast cancer in her liver. That is extremely bad news. She is considering going to M. D. Anderson Cancer Center in Houston for some radical therapy. I feel it’s my turn to be sending cards now, and I’ll be sending them to Laurel. If anyone that gets my letters would like to send her a “thinking of you” card also, her address is:
Dr. Laurel Harkness
9192 South Buffalo Drive
Littleton, Colorado 80127
Our friend Jane Forte, who winters in Florida and summers in Iowa, wrote to tell me she doesn’t think my memory problems and other lapses are necessarily the result of “chemo brain.” She says as one gets “older” (she didn’t say “old“) these things happen. Jane’s a bit older than me and says she knows from first hand experience that you don’t have to have chemotherapy to start forgetting things and saying things that you didn’t mean or expect to say. Yeah, Jane, but I’d rather blame it on the chemo than my age!
I’m trying to see if I can get my responsibilities at work changed to some extent, to eliminate some of the things I really don’t like doing. Though this remission is extremely encouraging, the average life expectancy for my disease is still only six years from diagnosis to death. And I’ve already used up one of those years! I’d like to plan a relatively relaxing time at work for the next few years and not have to do the things that cause me the greatest stress. For example, as I get older I enjoy surgery less and less. As you gain experience, you realize all the things that can go wrong in the operating room. I’d like not to do surgery and things like that for my last few years with the group. I’ve written a letter to the chief, to see if I could become primarily a clinic, daytime doc, but the initial response was to deny my request. So I’ve written another letter. We’ll see what happens, and what my options are.
I think that’s about enough for now. I’ll add a couple of post scripts from time to time, when there is any news to report, but otherwise this will just about wrap up Book One of the adventure. I hope that there isn’t the start of Book Two for many years. Thanks for all your comments, notes, prayers and interest in my progress. We’ll keep you up to date about any significant changes in what’s going on here.
Until later,
Dave
Chapter 5, Verse 5
December 18, 2002
Merry Christmas!!!
What a wonderful, wonderful Christmas present! I just got a phone call which had great news, news as good as anyone could hope for. My doc called and told me that my bone marrow biopsy was normal. They did a couple of tests on the marrow sample, and in neither could they find any leukemic cells! That’s really all the more amazing as just six months ago my marrow was comprised of 40% leukemic cells. Now there are none they can find. They also looked for telltale antigens on the cells and couldn’t find evidence of abnormal cells. That’s just excellent news!!
I couldn’t have asked for any more out of the therapy that we did on me over the past six months. I’m so grateful that the new medication (the Rituxan) was available and that my doc was willing to try the new combination therapy on me. Remember, I was the very first patient he tried it on. I also have to be grateful that my marrow responded so well, and so rapidly. At first I was disappointed when we had to stop the therapy after only four cycles (out of six planned) but four cycles were obviously all my marrow needed, at least for now.
So now we wait. I’m in a complete remission. Remember, however, remission doesn’t mean “cure,“ but rather means “no evidence of disease.“ I’ll be getting blood counts every month for at least the next six months to a year and will be seeing my doc about every three months for the next year. As long as my blood counts remain normal I’ll be in remission. How long will that last? Well, as my doc said last summer when we started the therapy, “We don’t know because we’re ‘writing the book’ right now.” In other words, there is no long term follow-up on this therapy to see how long the remissions last, or if, perhaps they are permanent. If they are permanent, that could be the “C” word (I hate to say “cure” because there really isn’t one yet, but this new stuff may be the answer...time will tell). I’m one of the pioneers, if you will, of this new therapy. And a very happy pioneer to be sure! There can’t be any better Christmas present than to be told that your cancer is gone!
Since I’m feeling better all the time, the only problems that remain are my suppressed immune system and my slowly improving memory problems. I’ll be on antibiotics for another nine months or so against certain bacteria (pneumocystis carinii, I believe they’re called) which can cause pneumonia in immunocompromised patients, I’ll also be at risk for viruses like the flu and colds, etc., for about that length of time. I’m going to continue to try to avoid anyone who is obviously sick and will continue to wash my hands compulsively throughout the day. I did get a flu immunization, but there is question about whether or not my immune system will be able to create antibodies (antikoerper) against the flu virus, as it has been so battered by the chemotherapy and will remain less than completely effective for many months.
I’ll be going back to work for a few days next month and then probably will be back full time in February. The nurses who put patients in the rooms for me will try to make sure that I am not going to see anyone who is obviously ill with a cough or cold since I will be at risk of infections for a long time.
One other step we’re still working on is to see if it would be reasonable to collect my stem cells at this time, for use later if/when I relapse. If we’re going to do it at all, this is an excellent time, as my marrow seems clean of malignant cells. As Brian said today when I talked with him, “It looks like we’ve got a pretty clean product now.“ Product? I guess that’s how oncologists talk about marrow. Anyway, Brian is in contact with the “transplanters” to get their opinions about an “autotransplant,” or a possible transplant using my own stem cells at some time in the future. It has been done many times in the past and the advantage is that there is no risk of the “graft versus host” reaction (in which the antibodies of the normal, immunocompetent transplanted cells attack the weakened, immunocompromised cells of the patient). This reaction is what causes much of the 25% death rate with marrow transplants. If we’re going to collect them, I’d like to get it scheduled before I start back to work. I really would like to collect the cells...it would be like having an insurance policy against a relapse. And it only costs about $200 a year to store them. Of course, the collection costs would be much greater.
So, what are we doing now, other than celebrating our good fortune? Our son Jonathan, who lives in El Paso, recently visited us with his girlfriend, Natalie, whom you heard about in our report from Las Vegas last August. She hadn’t been to Colorado before so we took her to the mountains to visit the snow and did a few other “Colorado“ things. Jon wanted to visit the new football stadium where the Broncos play so we also took a tour of the new “Invesco Field at Mile High,” a name only someone who works at Invesco (an investment firm) could like, as it’s named after a financial firm rather than any sports team or sports person!
And next week we’re going to have all our kids and grandkids here for Christmas! What a great way to celebrate this wonderful news! We really look forward to having all the family here.
And now for the bad news...remember when I first started my chemotherapy and the instructions I was given to get more calories, more fats in my diets, more gravies, more of every thing? Remember when I would go out for frozen custard every day? Well, now I have to go back on a diet and start watching my cholesterol again!! When I had active leukemia I really didn’t care about my cholesterol level, since it was so much less important than the leukemia. That’s no longer the case. You know, if it’s not one thing, it’s another. Of course, I’d much rather be watching my cholesterol than my leukemia!
December 19, 2002
We went out last night to have a celebratory dinner with our friends, Lou and Joan, to mark the occasion of getting evidence of my total remission. So, I didn’t get this letter out. But I’ll finish it up and get it on its way to you.
Last night Joan, who has faithfully been sending cards to me just about every day since I started the chemotherapy, said she guesses she’ll stop mailing the cards now. I guess that’s fair. What I’m going to do is start mailing cards to one of my colleagues. Those of you who have been getting my “journal” since the beginning may remember that I mentioned a colleague who was battling a recurrence of her breast cancer. She’s the one who warned me about the “fuzzies” I would get after each round, when I wouldn’t be able to think clearly. She also worked in my place in the clinic last August while I was out of the office. Well, she has gotten some more bad news. She has a large number of metastases of breast cancer in her liver. That is extremely bad news. She is considering going to M. D. Anderson Cancer Center in Houston for some radical therapy. I feel it’s my turn to be sending cards now, and I’ll be sending them to Laurel. If anyone that gets my letters would like to send her a “thinking of you” card also, her address is:
Dr. Laurel Harkness
9192 South Buffalo Drive
Littleton, Colorado 80127
Our friend Jane Forte, who winters in Florida and summers in Iowa, wrote to tell me she doesn’t think my memory problems and other lapses are necessarily the result of “chemo brain.” She says as one gets “older” (she didn’t say “old“) these things happen. Jane’s a bit older than me and says she knows from first hand experience that you don’t have to have chemotherapy to start forgetting things and saying things that you didn’t mean or expect to say. Yeah, Jane, but I’d rather blame it on the chemo than my age!
I’m trying to see if I can get my responsibilities at work changed to some extent, to eliminate some of the things I really don’t like doing. Though this remission is extremely encouraging, the average life expectancy for my disease is still only six years from diagnosis to death. And I’ve already used up one of those years! I’d like to plan a relatively relaxing time at work for the next few years and not have to do the things that cause me the greatest stress. For example, as I get older I enjoy surgery less and less. As you gain experience, you realize all the things that can go wrong in the operating room. I’d like not to do surgery and things like that for my last few years with the group. I’ve written a letter to the chief, to see if I could become primarily a clinic, daytime doc, but the initial response was to deny my request. So I’ve written another letter. We’ll see what happens, and what my options are.
I think that’s about enough for now. I’ll add a couple of post scripts from time to time, when there is any news to report, but otherwise this will just about wrap up Book One of the adventure. I hope that there isn’t the start of Book Two for many years. Thanks for all your comments, notes, prayers and interest in my progress. We’ll keep you up to date about any significant changes in what’s going on here.
Until later,
Dave
Wednesday, December 11, 2002
The Bone Marrow Biopsy and "Chemobrain."
Dave’s Great Adventure
Dave's Great Adventure
Chapter 5, Verse 4
December 11, 2002
The Bone Marrow Biopsy
Well, yesterday I had my follow up bone marrow biopsy. It’s not what I would call a good time, but it’s probably not as bad as I thought it would be before I had my first one, or as bad as it sounds.
But first, an update on my last blood count which I had two days ago. Things are very slowly normalizing. My previous white count was low at 2,100 or so, and my neutrophils had dropped to sub-normal levels again after having gone up quite a bit with the Neupogen. Well, now things are approaching normal without extra medications. My white count is in the low but normal range at 3,300 (normal is about 3,000 to 12,000) and my neutrophils are also low-normal at about 1.7 (normal being 1.5 to 7.5). My red cell and platelet counts are still normal. The only thing that is still low is my lymphocyte count, which is still quite low at 0.6, but that’s okay for now...that’s what we want. My doc surprised me today when he told me they would likely be low for nine to twelve months. Also, since they will be low for so long, I’ll be susceptible to colds and the flu for at least that long.
So, I went in for the bone marrow biopsy today. The biopsy was taken from the same place as the first one, the back of the hip. They again gave me some intravenous drugs to sedate me a little, at my doc’s suggestion. I didn’t think they gave me enough...I was still talking and making sense as we started the procedure. Brian injected some local anesthetic and started the biopsy. I really felt it when he hit the periosteum, the tissue that covers the bone (bone itself really has no feeling; when you break a bone, it’s the periosteum that causes all the pain). I jumped a bit when I felt that, since it felt kinda like a nail going into my back, but then I settled down. It hurt again when Brian aspirated on the great big syringe he was using to suck out the marrow sample. Most people say that this it what they feel the most. I have to agree. But then, it was over. It took all of about five or six minutes and there was no pain afterwards. I stayed in the treatment room until the drugs wore off and then Kathy drove us home.
The results of the biopsy will be available in about a week. I think I mentioned a few letters ago that we are going to do flow cytometry on the sample, looking for residual leukemic cells, so the results will take longer than they did the first time. I think that the flow cytometry will give us about the same kind of information that the PCR (polymerase chain reaction) test I have also mentioned would give us. If there are no apparent leukemic cells remaining, that will be an excellent result indeed!
I have mixed feelings about getting the bone marrow test done. Ever since we started the chemotherapy I have had fantasies about really getting “cured” of this disease. I think there is a chance of this happening, but it’s probably not realistic to expect it. As long as my blood tests were looking as good as they have, however, I could continue to think I was getting cured, but when the bone marrow biopsy results come back I’m afraid of what they’ll show and I won’t have that fantasy to hang on to anymore. Of course, if they come back showing no residual disease, I can be ecstatic about that result! In any case, I’m in remission for now, and beginning to feel normal, for the most part.
One thing that is not completely normal yet is my thinking processes. Those of you who have been receiving my letters from the beginning remember me discussing the “fuzzies,” a feeling that I could not think well, concentrate on reading, etc. This was really bad after each cycle of the drugs, starting on about day four or so and then slowly getting better over about ten days. It has now been two whole months since my last round of drugs and though I’m mostly back to normal, I still do and say stupid things on an almost daily basis. I feel like an early Alzheimer’s patient sometimes. The other day I was talking to Kathy about putting plant food in the pot with one of our trees. I told her I was going to add some “WD-40” (ein Art Schmiermittel) to the tree‘s soil. I have no idea where THAT came from! Later, when Kathy asked me what kind of lights I was going to put on the Christmas tree I replied, “Flowers.” Those things are rather humorous, but more importantly, there have been a few times when Kathy has had to yell at me that there was a red light (Ampel) or a stop sign at an intersection I was about to drive through. Today I asked Brian about “chemo brain” which is an poorly defined entity associated with chemotherapy. He said it is hard to quantify and diagnose and can last up to a year or more. I will have to be very careful when I go back to work and am taking care of patients again. I don’t want to prescribe any WD-40 for their menstrual cramps. They probably wouldn’t understand.
So what’s next? If the bone marrow biopsy is completely normal we will do nothing except check blood counts about once a month for the next year or so. If the bone marrow biopsy is not completely normal, we’ll probably do the same thing. In other words, we’re finished with any sort of therapy for now. At some point, when/if my white count begins to rise again, indicating progression of the disease, then we’ll see about more therapy.
And what kind of therapy? Brian and I talked about a few options yesterday. One option is to go back to the combination chemotherapy we have just finished using, since it worked so well the first time. However, if the disease comes back after using it once, it’ll surely come back again after a second round of the same drugs. At least I would think it would.
I also inquired again, now that I’m in remission, about harvesting some of my stem cells for use in a possible future bone marrow transplant. Brian again said he’d ask the “transplanters” about that idea, and noted that it had been done before for some other folks. If nothing else works in getting rid of this disease, a bone marrow transplant might be a last ditch option. The advantage of using my own stem cells would that there would be no danger of my body rejecting the cells. The risk of using my own stem cells is that we may transplant malignant cells back into my marrow which were not entirely cleared out during the collection process.
Another very interesting possibility for treatment is coming up real soon. Do any of you out there remember way back to August 1st, when I was discussing some new possibilities for treatment? Remember I mentioned a drug called Genasense (or antisense)? I didn’t think so! Anyway, there is a new drug against CLL cells called Genasense which has recently been developed and is in clinical trials. We’ll be using it here at Kaiser (my health insurance plan, and my employer) within a few months so if/when I need treatment again, that should be available. That’s an exciting possibility. Genasense, by the way, doesn’t attack the leukemic cells and kill them, it just adjusts their internal genetic code so they die when they’re supposed to rather than living almost forever and crowding out all the normal cells, which is how they cause death.
I think I’ve used up enough of your time and paper (if you’re printing these out) so I’ll quit for now. I’ll be back with another update when I get the results of the bone marrow biopsy back. And that may well conclude Book One of my Adventure, as I don’t think much else will be happening for a while other than that I’ll be going back to work over the next couple of months as my white counts rise. But I’ll tell you about that later.
Bye for now,
Dave
Dave's Great Adventure
Chapter 5, Verse 4
December 11, 2002
The Bone Marrow Biopsy
Well, yesterday I had my follow up bone marrow biopsy. It’s not what I would call a good time, but it’s probably not as bad as I thought it would be before I had my first one, or as bad as it sounds.
But first, an update on my last blood count which I had two days ago. Things are very slowly normalizing. My previous white count was low at 2,100 or so, and my neutrophils had dropped to sub-normal levels again after having gone up quite a bit with the Neupogen. Well, now things are approaching normal without extra medications. My white count is in the low but normal range at 3,300 (normal is about 3,000 to 12,000) and my neutrophils are also low-normal at about 1.7 (normal being 1.5 to 7.5). My red cell and platelet counts are still normal. The only thing that is still low is my lymphocyte count, which is still quite low at 0.6, but that’s okay for now...that’s what we want. My doc surprised me today when he told me they would likely be low for nine to twelve months. Also, since they will be low for so long, I’ll be susceptible to colds and the flu for at least that long.
So, I went in for the bone marrow biopsy today. The biopsy was taken from the same place as the first one, the back of the hip. They again gave me some intravenous drugs to sedate me a little, at my doc’s suggestion. I didn’t think they gave me enough...I was still talking and making sense as we started the procedure. Brian injected some local anesthetic and started the biopsy. I really felt it when he hit the periosteum, the tissue that covers the bone (bone itself really has no feeling; when you break a bone, it’s the periosteum that causes all the pain). I jumped a bit when I felt that, since it felt kinda like a nail going into my back, but then I settled down. It hurt again when Brian aspirated on the great big syringe he was using to suck out the marrow sample. Most people say that this it what they feel the most. I have to agree. But then, it was over. It took all of about five or six minutes and there was no pain afterwards. I stayed in the treatment room until the drugs wore off and then Kathy drove us home.
The results of the biopsy will be available in about a week. I think I mentioned a few letters ago that we are going to do flow cytometry on the sample, looking for residual leukemic cells, so the results will take longer than they did the first time. I think that the flow cytometry will give us about the same kind of information that the PCR (polymerase chain reaction) test I have also mentioned would give us. If there are no apparent leukemic cells remaining, that will be an excellent result indeed!
I have mixed feelings about getting the bone marrow test done. Ever since we started the chemotherapy I have had fantasies about really getting “cured” of this disease. I think there is a chance of this happening, but it’s probably not realistic to expect it. As long as my blood tests were looking as good as they have, however, I could continue to think I was getting cured, but when the bone marrow biopsy results come back I’m afraid of what they’ll show and I won’t have that fantasy to hang on to anymore. Of course, if they come back showing no residual disease, I can be ecstatic about that result! In any case, I’m in remission for now, and beginning to feel normal, for the most part.
One thing that is not completely normal yet is my thinking processes. Those of you who have been receiving my letters from the beginning remember me discussing the “fuzzies,” a feeling that I could not think well, concentrate on reading, etc. This was really bad after each cycle of the drugs, starting on about day four or so and then slowly getting better over about ten days. It has now been two whole months since my last round of drugs and though I’m mostly back to normal, I still do and say stupid things on an almost daily basis. I feel like an early Alzheimer’s patient sometimes. The other day I was talking to Kathy about putting plant food in the pot with one of our trees. I told her I was going to add some “WD-40” (ein Art Schmiermittel) to the tree‘s soil. I have no idea where THAT came from! Later, when Kathy asked me what kind of lights I was going to put on the Christmas tree I replied, “Flowers.” Those things are rather humorous, but more importantly, there have been a few times when Kathy has had to yell at me that there was a red light (Ampel) or a stop sign at an intersection I was about to drive through. Today I asked Brian about “chemo brain” which is an poorly defined entity associated with chemotherapy. He said it is hard to quantify and diagnose and can last up to a year or more. I will have to be very careful when I go back to work and am taking care of patients again. I don’t want to prescribe any WD-40 for their menstrual cramps. They probably wouldn’t understand.
So what’s next? If the bone marrow biopsy is completely normal we will do nothing except check blood counts about once a month for the next year or so. If the bone marrow biopsy is not completely normal, we’ll probably do the same thing. In other words, we’re finished with any sort of therapy for now. At some point, when/if my white count begins to rise again, indicating progression of the disease, then we’ll see about more therapy.
And what kind of therapy? Brian and I talked about a few options yesterday. One option is to go back to the combination chemotherapy we have just finished using, since it worked so well the first time. However, if the disease comes back after using it once, it’ll surely come back again after a second round of the same drugs. At least I would think it would.
I also inquired again, now that I’m in remission, about harvesting some of my stem cells for use in a possible future bone marrow transplant. Brian again said he’d ask the “transplanters” about that idea, and noted that it had been done before for some other folks. If nothing else works in getting rid of this disease, a bone marrow transplant might be a last ditch option. The advantage of using my own stem cells would that there would be no danger of my body rejecting the cells. The risk of using my own stem cells is that we may transplant malignant cells back into my marrow which were not entirely cleared out during the collection process.
Another very interesting possibility for treatment is coming up real soon. Do any of you out there remember way back to August 1st, when I was discussing some new possibilities for treatment? Remember I mentioned a drug called Genasense (or antisense)? I didn’t think so! Anyway, there is a new drug against CLL cells called Genasense which has recently been developed and is in clinical trials. We’ll be using it here at Kaiser (my health insurance plan, and my employer) within a few months so if/when I need treatment again, that should be available. That’s an exciting possibility. Genasense, by the way, doesn’t attack the leukemic cells and kill them, it just adjusts their internal genetic code so they die when they’re supposed to rather than living almost forever and crowding out all the normal cells, which is how they cause death.
I think I’ve used up enough of your time and paper (if you’re printing these out) so I’ll quit for now. I’ll be back with another update when I get the results of the bone marrow biopsy back. And that may well conclude Book One of my Adventure, as I don’t think much else will be happening for a while other than that I’ll be going back to work over the next couple of months as my white counts rise. But I’ll tell you about that later.
Bye for now,
Dave
Wednesday, December 4, 2002
Still Doin' Well, And Antarctica???
Dave’s Great Adventure
Chapter 5, Verse 3
December 4, 2002
Still Doin’ Okay
Well, this “adventure” has suddenly become quite boring, with not much going on, at least as far as the treatment and follow-up of my disease goes. But we’re still plodding along and using our time before I go back to work to see family and friends. But I did have another blood count last week that I’d like to update you on.
But first, in my last letter I reported that my white count was up to over 5,000 and was normal for the first time since we found out that I had leukemia. That prompted a good question from my family in Rock Hill, SC, who asked why my count, at 5,000, was normal, when my count at 5,000, last July after the very first round of chemotherapy, was not normal. The answer is that last July my total count went down from about 65,000 to about 5,000 after the drugs, but the percent of lymphocytes was still about 85%. Now, when my count went UP to 5,000 last week (after the Neupogen injections) the percent of lymphocytes was only about 8% or so. And since all the bad cells are lymphocytes, having a normal lymphocyte count and percentage put me into the definition of being in remission.
Now, a week ago last Monday I had blood drawn again. As expected, my white cell count went down again as the Neupogen effect wore off, this time to 2,100. That’s lower than I had expected, but I guess about what my doc had expected. Now what I don’t know is, that since my neutrophil count dropped so dramatically, but my lymphocyte count remained the same (at 500), the ratio of the lymphocytes to neutrophils and the other cells has now gone back up! Now my lymphocytes are about 23% of my white cells. That’s not normal. So am I in a complete remission now or not? I’ll have to ask my doc next week when I have my bone marrow biopsy.
Speaking of lymphocytes, with the four months of chemotherapy we killed off over 99% of them, dropping their numbers from about 56,000 or more, down to 500! I’m impressed that the chemotherapy could be so specific as to target the lymphocytes accurately enough to do that without also killing off 99% of my red cells, platelets and everything else. And that’s enough technical, medical talk for today!
Hey, I’ve gotten a lot of people asking me the same question: “What, Antarctica? Are you crazy?” Well, I’ve got this great brochure that describes some trips/cruises to Antarctica and I think they sound like a lot of fun. My wife, who doesn’t “do” cold weather very well, remains unconvinced, but I think she’ll go along. Cold is all in your mind. I’ve been reading Sir Ernest Shackleton’s book, “South,” based on his ill-fated voyage to Antarctica in 1914. At one point he notes, in his ship’s log, “Temperature 37 degrees Fahrenheit, pleasantly warm.” My wife does not think that 37 degrees is warm at all! The cruises go to visit penguin rookeries (I guess they’re places where they hatch their young), the old whaling stations in South Georgia, Shackleton’s grave, near the whaling stations, glaciers, ice cliffs and more. And we will get to land on and walk around on Antarctica! I think that sounds neat! How many of you have done that?
Over the last week Kathy and I were able to travel to Oklahoma and Texas, taking our first driving trip in quite a while. In Oklahoma we visited and had Thanksgiving dinner with Kathy’s folks and youngest sister. Then we headed south to visit our daughter Jen, her family and our younger son, Jeremy and his girlfriend. We were able to see my younger sister Deb and her family as well, as they were visiting in town from California just for Thanksgiving Day. They came for the Dallas football game, which Dallas actually won! After a couple of days in the Dallas area with the grandkids (have I ever told you that they are sooo cute!) we headed back north again to see Kathy’s folks again before returning home. While in Oklahoma we picked up a couple of things from her folks. They are moving to a retirement home soon and are downsizing all the things they have collected in their home over the last 35 years so we brought home a cedar chest Kathy’s granddad made in 1938. We also brought back a picture Kathy’s dad had gotten from a prisoner/artist who painted it while in the prison in Anthony, Texas, where Kathy’s dad worked for many years while with the Federal Bureau of Prisons.
This weekend we’ll have some houseguests. Our elder son is coming for a short visit and is bringing along his girlfriend. That’s going to be fun. Jon’s girlfriend, Natalie, has never been to Colorado so we’re going to try to give her a real Rocky Mountain experience. The mountains beckon....
I think that’s all that might be of some interest to you. I’ll be back with another update next week after the bone marrow biopsy and yet another blood count to let you know how I’m doing and what our short term plans are. Until then, this adventure just keeps plodding along.
Later,
Dave
Chapter 5, Verse 3
December 4, 2002
Still Doin’ Okay
Well, this “adventure” has suddenly become quite boring, with not much going on, at least as far as the treatment and follow-up of my disease goes. But we’re still plodding along and using our time before I go back to work to see family and friends. But I did have another blood count last week that I’d like to update you on.
But first, in my last letter I reported that my white count was up to over 5,000 and was normal for the first time since we found out that I had leukemia. That prompted a good question from my family in Rock Hill, SC, who asked why my count, at 5,000, was normal, when my count at 5,000, last July after the very first round of chemotherapy, was not normal. The answer is that last July my total count went down from about 65,000 to about 5,000 after the drugs, but the percent of lymphocytes was still about 85%. Now, when my count went UP to 5,000 last week (after the Neupogen injections) the percent of lymphocytes was only about 8% or so. And since all the bad cells are lymphocytes, having a normal lymphocyte count and percentage put me into the definition of being in remission.
Now, a week ago last Monday I had blood drawn again. As expected, my white cell count went down again as the Neupogen effect wore off, this time to 2,100. That’s lower than I had expected, but I guess about what my doc had expected. Now what I don’t know is, that since my neutrophil count dropped so dramatically, but my lymphocyte count remained the same (at 500), the ratio of the lymphocytes to neutrophils and the other cells has now gone back up! Now my lymphocytes are about 23% of my white cells. That’s not normal. So am I in a complete remission now or not? I’ll have to ask my doc next week when I have my bone marrow biopsy.
Speaking of lymphocytes, with the four months of chemotherapy we killed off over 99% of them, dropping their numbers from about 56,000 or more, down to 500! I’m impressed that the chemotherapy could be so specific as to target the lymphocytes accurately enough to do that without also killing off 99% of my red cells, platelets and everything else. And that’s enough technical, medical talk for today!
Hey, I’ve gotten a lot of people asking me the same question: “What, Antarctica? Are you crazy?” Well, I’ve got this great brochure that describes some trips/cruises to Antarctica and I think they sound like a lot of fun. My wife, who doesn’t “do” cold weather very well, remains unconvinced, but I think she’ll go along. Cold is all in your mind. I’ve been reading Sir Ernest Shackleton’s book, “South,” based on his ill-fated voyage to Antarctica in 1914. At one point he notes, in his ship’s log, “Temperature 37 degrees Fahrenheit, pleasantly warm.” My wife does not think that 37 degrees is warm at all! The cruises go to visit penguin rookeries (I guess they’re places where they hatch their young), the old whaling stations in South Georgia, Shackleton’s grave, near the whaling stations, glaciers, ice cliffs and more. And we will get to land on and walk around on Antarctica! I think that sounds neat! How many of you have done that?
Over the last week Kathy and I were able to travel to Oklahoma and Texas, taking our first driving trip in quite a while. In Oklahoma we visited and had Thanksgiving dinner with Kathy’s folks and youngest sister. Then we headed south to visit our daughter Jen, her family and our younger son, Jeremy and his girlfriend. We were able to see my younger sister Deb and her family as well, as they were visiting in town from California just for Thanksgiving Day. They came for the Dallas football game, which Dallas actually won! After a couple of days in the Dallas area with the grandkids (have I ever told you that they are sooo cute!) we headed back north again to see Kathy’s folks again before returning home. While in Oklahoma we picked up a couple of things from her folks. They are moving to a retirement home soon and are downsizing all the things they have collected in their home over the last 35 years so we brought home a cedar chest Kathy’s granddad made in 1938. We also brought back a picture Kathy’s dad had gotten from a prisoner/artist who painted it while in the prison in Anthony, Texas, where Kathy’s dad worked for many years while with the Federal Bureau of Prisons.
This weekend we’ll have some houseguests. Our elder son is coming for a short visit and is bringing along his girlfriend. That’s going to be fun. Jon’s girlfriend, Natalie, has never been to Colorado so we’re going to try to give her a real Rocky Mountain experience. The mountains beckon....
I think that’s all that might be of some interest to you. I’ll be back with another update next week after the bone marrow biopsy and yet another blood count to let you know how I’m doing and what our short term plans are. Until then, this adventure just keeps plodding along.
Later,
Dave
Wednesday, November 20, 2002
Remission?
Dave’s Great Adventure
Chapter 5, Verse 2
November 20, 2002
Remission?
Well, it’s been a week now since my doc told me that my bone marrow wouldn’t tolerate any more chemotherapy and left Kathy and me with nothing to do. We’d been planning our lives around these monthly infusions, so now, while we wait for my bone marrow to recover, we’re left with some open time. Like I reported last time, we’re going to get a couple of blood counts in the next few weeks, plus that ever-popular procedure, the bone marrow biopsy in about three weeks from now.
I need to update some information I sent out in my last letter. I said my white count had gone up to about 2,000. Well, since I have access to the computer with all the data, I looked up my last lab tests. Either Brian misread the numbers or Kathy and I misheard them, but my white count actually went up to over 5,000! Almost all of the increase was in neutrophils, most likely a result of the Neupogen I had been injecting. The net result is that my white count is normal...almost completely normal (except for very low lymphocyte counts), for the first time in many months. We need to see what it does over the next month or so, because as the Neupogen effect wears off, and my marrow recovers from the chemo, the numbers may change. But for now, the counts are normal, and my doc wrote in my chart that I was in “complete remission.”
That term, “complete remission,” is a very nice term to hear, indeed. That means I’ve made the first two cuts in the treatment of this disease. Many of you haven’t been on the DGA mailing list since the beginning, but early on I explained what we were trying to do with my therapy. There is really no known cure for this disease (chronic lymphocytic leukemia). There are various treatments, and they may extend longevity, but there is no cure. However, a very recent study from M. D. Anderson in Houston reported the results of using some combination chemotherapy, the Fludara and Cytoxan, which have been around for years, with a new drug, the Rituxan, which has only recently been approved for use, but was developed for use in treating lymphomas. Lymphomas and leukemias are not the same disease, but they share some characteristics, one of which is that many of the abnormal cells share a common antigen (a particularly shaped portion of the cell wall). In this case, the antigen is called the CD-20 antigen.
Rituxan is actually a mouse antibody against the CD-20 antigen, and allows the body’s own immune system to destroy the abnormal cells. In combination with the standard chemotherapy, the Fludara and Cytoxan, the folks at M. D. Anderson found that there was a much higher response rate and remission rate than with standard therapy. Where a good response rate in the past, with most drugs was about 20%, they were getting up to 90+% response rates with the new combination. And up to a third or more of the folks that responded with a complete or partial remission were negative for disease with some sophisticated molecular testing, about 18 months after the treatment. So, that’s why we were using this very new, and really, almost experimental, protocol. Now, being negative for the disease with the molecular testing (called a PCR probe) is very encouraging. That is not necessarily a cure, but it’s the best anyone has gotten so far!
So, the first test I passed was that I responded to the drugs. Some folks don’t. In some cases, patients with this disease had their leukemias get worse despite the treatment. A few died of their disease, a few died of the treatment! Luckily, I did neither.
Next, at least in the very, very short term (pending my bone marrow biopsy), I seem to be in a complete remission. That was the second test. Some of the folks who responded to the drugs got only a partial response and therefore a partial remission. I seem to be in the fortunate portion of the folks with a complete remission (keep your fingers crossed for the bone marrow results!).
Now, of the folks who got into a complete remission, over half (56%) were negative for the disease with the PCR probe. We won’t be able to do that test (I believe it’s a research tool) but if my bone marrow is negative for apparent leukemic cells, and the flow cytometry fails to find evidence of disease, there’s a good chance that I’ll be in that fortunate group. At least the odds are better than flipping a coin! I’ll take those odds, in a disease that has had no known cure in the past. I’ll keep you updated as more data becomes available.
So, Kathy and I have been trying to find things to do that don’t involve getting into too many crowds of people. Though my white count, for now, is pretty normal, I’m going to be immunosuppressed and therefore be unable to effectively fight off some infections for the next six to nine months. That’s because the lymphocytes we’ve been killing off include mostly the B lymphocytes, which are involved in antibody production. Anyway, in an attempt to get back into a normal routine, we went to church last Sunday, but as I did at the medical meeting in Maui, we sat at the far edge of the congregation, away from the mass of people. Just as in Maui, there was a lot of coughing going on.
It’s really interesting how many people you hear coughing or sneezing when you really, really don’t want to be near anyone with a cold. Kathy and I automatically look at each other in alarm whenever we hear a cough anywhere near us; in church, a restaurant, or a store. And I’ve become very sensitive to touching things that might carry viruses, like door handles, money, people’s hands, etc. I wash my hands all the time and we carry (which is to say, Kathy carries in her purse) a small bottle of the new waterless hand cleaner that kills viruses (it’s mostly alcohol) and we both use the stuff all the time. And I keep my hands away from my face, I keep my fingers out of my mouth, and I don’t bite my fingernails. I really don’t want to catch a cold. My doc says I won’t easily be able to shake it off if I get one. And catching the flu would be a big problem as I wouldn’t be able to mount an immune response to the virus. I didn’t get the flu shot for the same reason; I wouldn’t be able to produce antibodies to it anyway.
So, we’ve been working around the house, doing a little shopping, and starting to get back into somewhat of a normal routine after all these months of living around my chemo cycles. I’ve been able to start working out a little for the first time in months. We have a Nordic Track Cross-Trainer that I was exercising on three times a week up until I got sick last February. I haven’t done anything in months, even when I felt well, because I knew I was going to do more chemo every four weeks and get back out of shape, so I just stopped exercising entirely. Now I have no excuses, so I’m slowly starting to get back in shape.
Kathy and I have had a number of things we were going to do “some day.” Going to Hawaii was one of them. Another was to go to Alaska. We’ve decided that since the future is uncertain, we’re going to start doing those things now. There is a self-guided tour to Alaska that we had been looking at for a number of months, and this week we signed up for it. Next June, presuming I’m still doing well, we’ll be flying to Juneau, Alaska for an eleven day trip. I think this should be a very interesting trip; it includes whale watching, a helicopter ride up to a glacier, a float plane ride out to an island with a large number of bears and bald eagles, a train ride for a day, a whitewater rafting trip, and “flightseeing” with a bush pilot who will take us around Mount McKinley. That should be enough to keep us busy for the eleven days. Next, we’re looking at a trip to Antarctica, maybe next year!!!
Did anyone else get up to look at the Leonids meteor shower last night? Kathy and I got up at 3:00 AM and spent an hour out on the deck in sub-freezing temperatures watching the meteors. It was a pretty good show, but we had partly cloudy skies that obscured some of the meteors, and the quantity of meteors wasn’t near what it was last year. I think I was spoiled by last year’s show, where there were probably a couple of meteors per second, a real meteor “storm.” By comparison, this year’s display was more a like a meteor “drizzle” as we saw perhaps two to four meteors a minute. Still, it was a pretty good show.
I think I’ve gone on long enough for this “verse.” We’re going to try to go to Dallas and Oklahoma to visit Kathy’s parents and our kids over Thanksgiving week. I’ll let you know how our trip goes, and how my next blood tests turn out, in the next exciting verse!
Until then,
Dave
Chapter 5, Verse 2
November 20, 2002
Remission?
Well, it’s been a week now since my doc told me that my bone marrow wouldn’t tolerate any more chemotherapy and left Kathy and me with nothing to do. We’d been planning our lives around these monthly infusions, so now, while we wait for my bone marrow to recover, we’re left with some open time. Like I reported last time, we’re going to get a couple of blood counts in the next few weeks, plus that ever-popular procedure, the bone marrow biopsy in about three weeks from now.
I need to update some information I sent out in my last letter. I said my white count had gone up to about 2,000. Well, since I have access to the computer with all the data, I looked up my last lab tests. Either Brian misread the numbers or Kathy and I misheard them, but my white count actually went up to over 5,000! Almost all of the increase was in neutrophils, most likely a result of the Neupogen I had been injecting. The net result is that my white count is normal...almost completely normal (except for very low lymphocyte counts), for the first time in many months. We need to see what it does over the next month or so, because as the Neupogen effect wears off, and my marrow recovers from the chemo, the numbers may change. But for now, the counts are normal, and my doc wrote in my chart that I was in “complete remission.”
That term, “complete remission,” is a very nice term to hear, indeed. That means I’ve made the first two cuts in the treatment of this disease. Many of you haven’t been on the DGA mailing list since the beginning, but early on I explained what we were trying to do with my therapy. There is really no known cure for this disease (chronic lymphocytic leukemia). There are various treatments, and they may extend longevity, but there is no cure. However, a very recent study from M. D. Anderson in Houston reported the results of using some combination chemotherapy, the Fludara and Cytoxan, which have been around for years, with a new drug, the Rituxan, which has only recently been approved for use, but was developed for use in treating lymphomas. Lymphomas and leukemias are not the same disease, but they share some characteristics, one of which is that many of the abnormal cells share a common antigen (a particularly shaped portion of the cell wall). In this case, the antigen is called the CD-20 antigen.
Rituxan is actually a mouse antibody against the CD-20 antigen, and allows the body’s own immune system to destroy the abnormal cells. In combination with the standard chemotherapy, the Fludara and Cytoxan, the folks at M. D. Anderson found that there was a much higher response rate and remission rate than with standard therapy. Where a good response rate in the past, with most drugs was about 20%, they were getting up to 90+% response rates with the new combination. And up to a third or more of the folks that responded with a complete or partial remission were negative for disease with some sophisticated molecular testing, about 18 months after the treatment. So, that’s why we were using this very new, and really, almost experimental, protocol. Now, being negative for the disease with the molecular testing (called a PCR probe) is very encouraging. That is not necessarily a cure, but it’s the best anyone has gotten so far!
So, the first test I passed was that I responded to the drugs. Some folks don’t. In some cases, patients with this disease had their leukemias get worse despite the treatment. A few died of their disease, a few died of the treatment! Luckily, I did neither.
Next, at least in the very, very short term (pending my bone marrow biopsy), I seem to be in a complete remission. That was the second test. Some of the folks who responded to the drugs got only a partial response and therefore a partial remission. I seem to be in the fortunate portion of the folks with a complete remission (keep your fingers crossed for the bone marrow results!).
Now, of the folks who got into a complete remission, over half (56%) were negative for the disease with the PCR probe. We won’t be able to do that test (I believe it’s a research tool) but if my bone marrow is negative for apparent leukemic cells, and the flow cytometry fails to find evidence of disease, there’s a good chance that I’ll be in that fortunate group. At least the odds are better than flipping a coin! I’ll take those odds, in a disease that has had no known cure in the past. I’ll keep you updated as more data becomes available.
So, Kathy and I have been trying to find things to do that don’t involve getting into too many crowds of people. Though my white count, for now, is pretty normal, I’m going to be immunosuppressed and therefore be unable to effectively fight off some infections for the next six to nine months. That’s because the lymphocytes we’ve been killing off include mostly the B lymphocytes, which are involved in antibody production. Anyway, in an attempt to get back into a normal routine, we went to church last Sunday, but as I did at the medical meeting in Maui, we sat at the far edge of the congregation, away from the mass of people. Just as in Maui, there was a lot of coughing going on.
It’s really interesting how many people you hear coughing or sneezing when you really, really don’t want to be near anyone with a cold. Kathy and I automatically look at each other in alarm whenever we hear a cough anywhere near us; in church, a restaurant, or a store. And I’ve become very sensitive to touching things that might carry viruses, like door handles, money, people’s hands, etc. I wash my hands all the time and we carry (which is to say, Kathy carries in her purse) a small bottle of the new waterless hand cleaner that kills viruses (it’s mostly alcohol) and we both use the stuff all the time. And I keep my hands away from my face, I keep my fingers out of my mouth, and I don’t bite my fingernails. I really don’t want to catch a cold. My doc says I won’t easily be able to shake it off if I get one. And catching the flu would be a big problem as I wouldn’t be able to mount an immune response to the virus. I didn’t get the flu shot for the same reason; I wouldn’t be able to produce antibodies to it anyway.
So, we’ve been working around the house, doing a little shopping, and starting to get back into somewhat of a normal routine after all these months of living around my chemo cycles. I’ve been able to start working out a little for the first time in months. We have a Nordic Track Cross-Trainer that I was exercising on three times a week up until I got sick last February. I haven’t done anything in months, even when I felt well, because I knew I was going to do more chemo every four weeks and get back out of shape, so I just stopped exercising entirely. Now I have no excuses, so I’m slowly starting to get back in shape.
Kathy and I have had a number of things we were going to do “some day.” Going to Hawaii was one of them. Another was to go to Alaska. We’ve decided that since the future is uncertain, we’re going to start doing those things now. There is a self-guided tour to Alaska that we had been looking at for a number of months, and this week we signed up for it. Next June, presuming I’m still doing well, we’ll be flying to Juneau, Alaska for an eleven day trip. I think this should be a very interesting trip; it includes whale watching, a helicopter ride up to a glacier, a float plane ride out to an island with a large number of bears and bald eagles, a train ride for a day, a whitewater rafting trip, and “flightseeing” with a bush pilot who will take us around Mount McKinley. That should be enough to keep us busy for the eleven days. Next, we’re looking at a trip to Antarctica, maybe next year!!!
Did anyone else get up to look at the Leonids meteor shower last night? Kathy and I got up at 3:00 AM and spent an hour out on the deck in sub-freezing temperatures watching the meteors. It was a pretty good show, but we had partly cloudy skies that obscured some of the meteors, and the quantity of meteors wasn’t near what it was last year. I think I was spoiled by last year’s show, where there were probably a couple of meteors per second, a real meteor “storm.” By comparison, this year’s display was more a like a meteor “drizzle” as we saw perhaps two to four meteors a minute. Still, it was a pretty good show.
I think I’ve gone on long enough for this “verse.” We’re going to try to go to Dallas and Oklahoma to visit Kathy’s parents and our kids over Thanksgiving week. I’ll let you know how our trip goes, and how my next blood tests turn out, in the next exciting verse!
Until then,
Dave
Wednesday, November 13, 2002
Chapter Five; Hawaii Was Great, But The Long Nadir....
Dave’s Great Adventure
Chapter 5, Verse 1
November 13, 2002
The Story...Continues??
Well, we’ve gotten back from our trip, and it’s time for another chapter to start, since I’ve been starting a new chapter with each round of chemotherapy. But, I really haven’t finished telling you about the events at the end of Chapter 4. We were getting ready to leave town, I was going to have to give myself those shots, and my white count was very, very low. Well, here’s what happened.
The night of the last “verse” I gave myself the first shot of Neupogen, as I had been taught to do. I didn’t do too badly, though docs are not taught how to give shots in medical school. It was kinda tough to actually stick the needle into my belly, but it didn’t hurt much and I got the job done. We got up at about 3:30 the next morning to catch a flight to LA that left at 6:55. Those of you who know Kathy well know that she always wants to get to the airport early so we won’t miss our flight. Well, we were sitting at the gate for our flight, all by ourselves, by about 5:30. We had plenty of time to eat a McDonald’s breakfast and read the paper! The plane left on time and we had a smooth flight to Los Angeles. I was paranoid about being around too many folks with my white blood cell count being so low, but on the flight to LA the plane was almost empty. We changed planes in LA and headed out to Maui, but this plane was full. Fortunately no one around us was coughing or sneezing too much.
We got to Maui on time and collected our luggage, finding that one of our suitcases had lost a wheel on the flight, so we couldn’t roll it along, but instead I had to carry the thing! But, we got our rental car and found our way to the hotel at which the conference was going to be held, the Maui Prince. It was interesting that, when I asked the clerk at the rental agency how far the hotel was, she gave us the answer, not in miles, but in minutes. That was to be a pattern. Rarely did people express distances in actual distance, but rather in the time it took to get somewhere. That turns out to be, I think, because traffic is very slow and the roads are very circuitous. Though actual straight line distances are not great (the whole island of Maui can’t be more than about twenty miles by thirty miles or so) it can take over an hour to travel twenty or thirty miles.
We checked into the hotel and found that it was very nice indeed. It was right on a soft beach with a gentle surf and lots of palm trees, flowers and birds. We also found out later that there were a lot of large sea turtles in the surf just off the beach. We were able to watch a large turtle one day, just about thirty feet off the beach, with a shell probably about 24 inches across and a head as large as my fist.
The hotel was a beautiful place, and is apparently a popular place for weddings. We must have seen at least five weddings of various sizes, during our stay. Kathy got her fill of checking out wedding dresses! I don’t know why women are so curious about what other women are wearing for their weddings. Anyway, we saw very large weddings with large receptions and music, and very small, private weddings with no one present except the bride and groom and the minister. At one wedding we witnessed, the bride and groom were standing alone on the beach with the minister saying their vows. There was no wedding party at all. The groom was quite a bit shorter than the bride, and so was standing on a small mound of sand to make him appear about the same height as his bride, at least for the photographer!
The meeting, which was the main reason we were in Maui, turned out to be an excellent educational meeting with excellent topics and experts on a wide variety of subjects. I was, again, a bit nervous about being in a large group of people, and the meeting was actually larger than I had thought it would be (about 200 people) so I tended to go in and get a seat all the way to one side of the room, rather than being surrounded by people. There was a fair amount of coughing going on, and I tried to stay away from anyone that appeared to be sick.
I was also restricted in my activities, because of my therapy and low counts. The chemotherapy made me photosensitive, so I couldn’t get much sun. And with my white counts being so low, I couldn’t eat fresh fruits and vegetables nor could I engage in, well, I’m not sure I can say it in a family publication, so I’ll just whisper it (we couldn’t have S-E-X). You know, because of germs and stuff.
Our son-in-law suggested that going to Hawaii with those restrictions was like taking a blind man to a strip show!
But we had a good time, nevertheless. The meeting was set up to run just in the morning and the daily sessions were generally over by about 1:00. That gave us the afternoons to do things. So we set about supporting the economy of Maui. The island is just beautiful, and we spent one afternoon just driving around seeing things and places that my excellent nurse, Debbie (who had lived on Maui) recommended. Then one morning, a day the meetings were held in the afternoon, we went on a helicopter ride around the island. We’d never done that before, and though I rode on lots of helicopters in Vietnam, I generally don’t like small aircraft. They tend to crash too frequently. Plus they tend to be way too expensive. But I have a new outlook on life now, and a different perspective on things. When you’re likely to have only five years left to live, and only that length of time to try to use your retirement money, things look different. If you crash, well, it was probably meant to be, and what is money for, if not to be enjoyed. I’ve been trying to save all my life; now it’s time to try to enjoy some of it while I can.
And one day we went out on a submarine ride. A group of about 20 folks signed up for the sub ride, and we were taken down to about 150 feet to a few coral reefs to see the fish swimming around. We were able to look out the portholes and see the underwater wildlife and take pictures. There was nothing too spectacular, but it was fascinating just to be there.
We went shopping, ate out too often and just had a good time being together. It was rather like a honeymoon, but in reverse, if you will. Generally a honeymoon is when you start your married life. We were there in what, unfortunately, may be the end stage of our married life, but it was beautiful, none the less. We spent a lot of time holding hands and just looking at each other and the soft green scenery. It was good for us.
Next I want to take Kathy to Alaska! Maybe this summer.
Kathy was watching out for me the whole time, guarding me from the dangers all around. She watched what I ate, kept me away from folks who were coughing and did most of the things that required interacting with groups of people. One day I joked that I was going to eat a big bowl of fresh fruit at the meeting, and she got teary-eyed! So I couldn’t eat the fruit! Because of the dietary limits, I ate mostly cheeseburgers and fish and chips, and occasionally other fish meals. And I gained a little weight.
I attended every meeting during our time in Maui. It was good to hear experts telling us that estrogen really doesn’t become a toxic substance to women just because they turn fifty, as many of the lay media would have us believe. And we were taught more about osteoporosis, breast cancer, abnormal pap smears and more. It was the best educational meeting I’ve been to in a long time. And when it was over, we headed home.
The ride home was tough, worse, I think, than the ride to Germany. The plane left Maui at 10:00 at night. Care to guess when we were at the airport? That’s right, we were there at 6:00! There was only one other couple at our gate, and they were coughing, so Kathy took me to the far end of the terminal where there were no other people and we spent time there, reading and talking. The plane left on time, and got to LA about four hours later, at 4:15 AM, where we had to change planes and had about a two hour layover. Then we boarded the plane to Denver, getting here at about 9:30 or so. The reason the plane ride was so tough is the layover in LA. On the flight to Germany, though it is longer, you can sleep. We had no real good length of time on this trip in which to sleep.
Before we went home, I went by the clinic to get a blood count done because my doc needed to see what my blood counts were by the next day before deciding what we were going to do. Then we spent the rest of the day doing errands. And that’s the end of Chapter 4.
CHAPTER FIVE: Yesterday Kathy and I got ready for the next round of chemo. We packed up all the stuff we’ve found we need for those days. Since yesterday was to be a Rituxan day (a long day), Kathy had lunches made for us, I had my CD player and my reading material, and Kathy brought along the quilt we’re STILL working on for Brooke, our younger granddaughter. We got to my doc’s office on time and he got there just a bit late, after making his hospital rounds. Brian pulled up my blood count from the day before, which I hadn’t yet seen, and gave us the news. It was kinda like a good news/bad news, or maybe a good news/good news result. First, the Neupogen worked well. My neutrophils had gone up from close to zero (remember, they were at 200 with normal being 150 to 7500) to 3000; they were back in the normal range. However, my platelets had dropped to 110,000 from 200,000, and my total white count was still only 2,000. Other good news was that my lymphocytes (among which the leukemic cells hide out) had stayed down at 300. The bottom line was that after four weeks since my last infusions, I was still in a nadir! My stem cells, the cells in the bone marrow that create all the other cells, were pleading for mercy! They are pretty well depleted and not able to recover as they had during the first three cycles. As my doc said, “We’ve knocked off so many cells that now we’re just beating the crap out of the good cells!”
So, he is stopping the chemotherapy after just the four cycles I’ve had. I’m not sure what to think of this development. In theory, if we’ve gotten to the point that we’re killing off normal cells, then the leukemic cells, which should be more sensitive to the drugs, should be gone. In theory! On the other hand, if even two or three leukemic cells remain, they can come back. I’ve been happy that we’ve been on the offensive in the fight against this disease. Now we’re going to be passive again. If I can, I’m going to try to talk him into giving me a couple of more cycles later, but I guess we have to be careful...I do need to have some marrow cells left at the end of the treatment.
I asked what we’d do next. Well, we’re going to do another blood count in a couple of weeks, to see if my marrow is recovering, then one more two weeks later, with another bone marrow biopsy at that time. The bone marrow biopsy will tell us if we seem to have cleaned out the marrow. He’s going to have them run a flow cytometry (remember that test from the early DGA letters?) and see if they can detect any leukemic cells. And then? Brian said we’d watch and wait. In other words, we’ll just do blood counts and see what happens to my white cell counts. And if they go up, we’ll have to see what might be available because as of right now, there is no other real treatment.
And so, that’s the end of this verse. We’re going to follow my blood counts for a while and when they get back close to normal I can go back to work, probably some time in December or by early January, at the latest, though Brian said that this time of year is a bad time to go back, with all the coughs and colds and with the influenza season about to start. But, if we can screen out the sick patients, I should do pretty well.
That’s about all for now. I’ll be back if/when anything significant happens.
Later,
Dave
Chapter 5, Verse 1
November 13, 2002
The Story...Continues??
Well, we’ve gotten back from our trip, and it’s time for another chapter to start, since I’ve been starting a new chapter with each round of chemotherapy. But, I really haven’t finished telling you about the events at the end of Chapter 4. We were getting ready to leave town, I was going to have to give myself those shots, and my white count was very, very low. Well, here’s what happened.
The night of the last “verse” I gave myself the first shot of Neupogen, as I had been taught to do. I didn’t do too badly, though docs are not taught how to give shots in medical school. It was kinda tough to actually stick the needle into my belly, but it didn’t hurt much and I got the job done. We got up at about 3:30 the next morning to catch a flight to LA that left at 6:55. Those of you who know Kathy well know that she always wants to get to the airport early so we won’t miss our flight. Well, we were sitting at the gate for our flight, all by ourselves, by about 5:30. We had plenty of time to eat a McDonald’s breakfast and read the paper! The plane left on time and we had a smooth flight to Los Angeles. I was paranoid about being around too many folks with my white blood cell count being so low, but on the flight to LA the plane was almost empty. We changed planes in LA and headed out to Maui, but this plane was full. Fortunately no one around us was coughing or sneezing too much.
We got to Maui on time and collected our luggage, finding that one of our suitcases had lost a wheel on the flight, so we couldn’t roll it along, but instead I had to carry the thing! But, we got our rental car and found our way to the hotel at which the conference was going to be held, the Maui Prince. It was interesting that, when I asked the clerk at the rental agency how far the hotel was, she gave us the answer, not in miles, but in minutes. That was to be a pattern. Rarely did people express distances in actual distance, but rather in the time it took to get somewhere. That turns out to be, I think, because traffic is very slow and the roads are very circuitous. Though actual straight line distances are not great (the whole island of Maui can’t be more than about twenty miles by thirty miles or so) it can take over an hour to travel twenty or thirty miles.
We checked into the hotel and found that it was very nice indeed. It was right on a soft beach with a gentle surf and lots of palm trees, flowers and birds. We also found out later that there were a lot of large sea turtles in the surf just off the beach. We were able to watch a large turtle one day, just about thirty feet off the beach, with a shell probably about 24 inches across and a head as large as my fist.
The hotel was a beautiful place, and is apparently a popular place for weddings. We must have seen at least five weddings of various sizes, during our stay. Kathy got her fill of checking out wedding dresses! I don’t know why women are so curious about what other women are wearing for their weddings. Anyway, we saw very large weddings with large receptions and music, and very small, private weddings with no one present except the bride and groom and the minister. At one wedding we witnessed, the bride and groom were standing alone on the beach with the minister saying their vows. There was no wedding party at all. The groom was quite a bit shorter than the bride, and so was standing on a small mound of sand to make him appear about the same height as his bride, at least for the photographer!
The meeting, which was the main reason we were in Maui, turned out to be an excellent educational meeting with excellent topics and experts on a wide variety of subjects. I was, again, a bit nervous about being in a large group of people, and the meeting was actually larger than I had thought it would be (about 200 people) so I tended to go in and get a seat all the way to one side of the room, rather than being surrounded by people. There was a fair amount of coughing going on, and I tried to stay away from anyone that appeared to be sick.
I was also restricted in my activities, because of my therapy and low counts. The chemotherapy made me photosensitive, so I couldn’t get much sun. And with my white counts being so low, I couldn’t eat fresh fruits and vegetables nor could I engage in, well, I’m not sure I can say it in a family publication, so I’ll just whisper it (we couldn’t have S-E-X). You know, because of germs and stuff.
Our son-in-law suggested that going to Hawaii with those restrictions was like taking a blind man to a strip show!
But we had a good time, nevertheless. The meeting was set up to run just in the morning and the daily sessions were generally over by about 1:00. That gave us the afternoons to do things. So we set about supporting the economy of Maui. The island is just beautiful, and we spent one afternoon just driving around seeing things and places that my excellent nurse, Debbie (who had lived on Maui) recommended. Then one morning, a day the meetings were held in the afternoon, we went on a helicopter ride around the island. We’d never done that before, and though I rode on lots of helicopters in Vietnam, I generally don’t like small aircraft. They tend to crash too frequently. Plus they tend to be way too expensive. But I have a new outlook on life now, and a different perspective on things. When you’re likely to have only five years left to live, and only that length of time to try to use your retirement money, things look different. If you crash, well, it was probably meant to be, and what is money for, if not to be enjoyed. I’ve been trying to save all my life; now it’s time to try to enjoy some of it while I can.
And one day we went out on a submarine ride. A group of about 20 folks signed up for the sub ride, and we were taken down to about 150 feet to a few coral reefs to see the fish swimming around. We were able to look out the portholes and see the underwater wildlife and take pictures. There was nothing too spectacular, but it was fascinating just to be there.
We went shopping, ate out too often and just had a good time being together. It was rather like a honeymoon, but in reverse, if you will. Generally a honeymoon is when you start your married life. We were there in what, unfortunately, may be the end stage of our married life, but it was beautiful, none the less. We spent a lot of time holding hands and just looking at each other and the soft green scenery. It was good for us.
Next I want to take Kathy to Alaska! Maybe this summer.
Kathy was watching out for me the whole time, guarding me from the dangers all around. She watched what I ate, kept me away from folks who were coughing and did most of the things that required interacting with groups of people. One day I joked that I was going to eat a big bowl of fresh fruit at the meeting, and she got teary-eyed! So I couldn’t eat the fruit! Because of the dietary limits, I ate mostly cheeseburgers and fish and chips, and occasionally other fish meals. And I gained a little weight.
I attended every meeting during our time in Maui. It was good to hear experts telling us that estrogen really doesn’t become a toxic substance to women just because they turn fifty, as many of the lay media would have us believe. And we were taught more about osteoporosis, breast cancer, abnormal pap smears and more. It was the best educational meeting I’ve been to in a long time. And when it was over, we headed home.
The ride home was tough, worse, I think, than the ride to Germany. The plane left Maui at 10:00 at night. Care to guess when we were at the airport? That’s right, we were there at 6:00! There was only one other couple at our gate, and they were coughing, so Kathy took me to the far end of the terminal where there were no other people and we spent time there, reading and talking. The plane left on time, and got to LA about four hours later, at 4:15 AM, where we had to change planes and had about a two hour layover. Then we boarded the plane to Denver, getting here at about 9:30 or so. The reason the plane ride was so tough is the layover in LA. On the flight to Germany, though it is longer, you can sleep. We had no real good length of time on this trip in which to sleep.
Before we went home, I went by the clinic to get a blood count done because my doc needed to see what my blood counts were by the next day before deciding what we were going to do. Then we spent the rest of the day doing errands. And that’s the end of Chapter 4.
CHAPTER FIVE: Yesterday Kathy and I got ready for the next round of chemo. We packed up all the stuff we’ve found we need for those days. Since yesterday was to be a Rituxan day (a long day), Kathy had lunches made for us, I had my CD player and my reading material, and Kathy brought along the quilt we’re STILL working on for Brooke, our younger granddaughter. We got to my doc’s office on time and he got there just a bit late, after making his hospital rounds. Brian pulled up my blood count from the day before, which I hadn’t yet seen, and gave us the news. It was kinda like a good news/bad news, or maybe a good news/good news result. First, the Neupogen worked well. My neutrophils had gone up from close to zero (remember, they were at 200 with normal being 150 to 7500) to 3000; they were back in the normal range. However, my platelets had dropped to 110,000 from 200,000, and my total white count was still only 2,000. Other good news was that my lymphocytes (among which the leukemic cells hide out) had stayed down at 300. The bottom line was that after four weeks since my last infusions, I was still in a nadir! My stem cells, the cells in the bone marrow that create all the other cells, were pleading for mercy! They are pretty well depleted and not able to recover as they had during the first three cycles. As my doc said, “We’ve knocked off so many cells that now we’re just beating the crap out of the good cells!”
So, he is stopping the chemotherapy after just the four cycles I’ve had. I’m not sure what to think of this development. In theory, if we’ve gotten to the point that we’re killing off normal cells, then the leukemic cells, which should be more sensitive to the drugs, should be gone. In theory! On the other hand, if even two or three leukemic cells remain, they can come back. I’ve been happy that we’ve been on the offensive in the fight against this disease. Now we’re going to be passive again. If I can, I’m going to try to talk him into giving me a couple of more cycles later, but I guess we have to be careful...I do need to have some marrow cells left at the end of the treatment.
I asked what we’d do next. Well, we’re going to do another blood count in a couple of weeks, to see if my marrow is recovering, then one more two weeks later, with another bone marrow biopsy at that time. The bone marrow biopsy will tell us if we seem to have cleaned out the marrow. He’s going to have them run a flow cytometry (remember that test from the early DGA letters?) and see if they can detect any leukemic cells. And then? Brian said we’d watch and wait. In other words, we’ll just do blood counts and see what happens to my white cell counts. And if they go up, we’ll have to see what might be available because as of right now, there is no other real treatment.
And so, that’s the end of this verse. We’re going to follow my blood counts for a while and when they get back close to normal I can go back to work, probably some time in December or by early January, at the latest, though Brian said that this time of year is a bad time to go back, with all the coughs and colds and with the influenza season about to start. But, if we can screen out the sick patients, I should do pretty well.
That’s about all for now. I’ll be back if/when anything significant happens.
Later,
Dave
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