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