Postscript Number Two; Searching for Stem Cells!

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