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