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 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,

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,


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.