Wednesday, July 21, 2010
Book Four, Chapter 1, Verse 2
I have often been asked in the last few months, “What are you doing now that your leukemia has relapsed?” Folks wonder if I’m on chemotherapy again, or taking some kind of pills to hold the disease off, or what. These are fair questions, as it would seem logical that now that my disease has come back yet again, we should be doing something.
In fact, we are doing nothing. At least, next to nothing. We are just doing blood tests periodically, about every two months, to see how fast my disease is coming back. This is called the “Watch and Wait” method and it’s used a lot in the management of chronic lymphocytic leukemia (CLL).
Now, if I had breast cancer or prostate cancer or some other solid tumor kind of cancer, the reappearance of the disease would spark an immediate plan to once again attack the disease with chemotherapy or radiation or something, in an attempt to destroy as much of the disease as possible before it had a chance to grow any more than it had already. With most solid tumors, the bigger the tumor, the harder it is to treat.
But my cancer is not a solid tumor, it’s a blood cancer. And the leukemia cells flowing in my bloodstream aren’t actually hurting me at all. That doesn’t sound possible, but it’s true. They are just abnormal white cells, lymphocytes, and all they’re doing is flowing around in my blood, not dying on time like they’re supposed to, and slowly increasing in numbers. But they aren’t really hurting anything. What will kill me is when enough of them accumulate in my bone marrow to prevent the formation of normal red and white blood cells and platelets.
So why don’t we treat my disease now, while there isn’t much of it around? That, too, is a great question. We could do that, but the treatments have their own risks, like damaging my immune system, causing lowered numbers of platelets in my blood, and in general, causing damage around the body. And since we can’t, apparently, cure the disease with the therapies we have been using, but can only knock the disease back a bit, it makes sense not to expose me to any more chemotherapy than I need to be exposed to. So, we wait until my leukemia again gets “bad” enough to need treatment.
And when is that? Another great question. It’s not completely arbitrary, but could be thought to be so. Basically, we will probably start treatments again when my white blood cell counts get to about 100,000, like they were in late 2007. Or if my platelet counts get too low, or if I start having lots of symptoms, large lymph nodes, night sweats or a host of other things. After my second round of chemotherapy I relapsed in about 18 months but didn’t need to be treated for two more years after the onset of the relapse. Five months have now elapsed since I found out I was relapsing yet again.
Let me digress just a bit and talk about my disease, chronic lymphocytic leukemia. Some folks used to call this disease the “good” leukemia, because it didn’t kill you as fast as many other leukemias out there, some of which can result in death in six months or so. In contrast, some folks with CLL live relatively normal lives for decades, never needing treatments, having what is called the “smoldering” CLL. But then there were the folks with CLL who died in a few years. Why should some folks die in a few years, like my dad who died in about five years, yet other folks live with their disease twenty years or more?
Well, when I got sick back in 2002, they didn’t know that CLL is actually a family of diseases, with at least seven or eight sub-types, and your survival depends in large part on which sub-group you belong to. The sub-types, which were discovered in about 2003, depend mostly on your blood’s chromosome types, as there are several common mutations found in patients with CLL. Some mutations are “good,” in terms of your survival, as you won’t die as quickly as some others. Some are very bad, and the disease in these circumstances progresses rapidly and is more resistant to treatments.
My chromosomes are normal, the usual 46XY that all normal males have. You’d think that normal chromosomes would be the “best” to have when you have a disease, but curiously, though normal chromosomes are one of the better types to have, they aren’t the best to have. There is a certain mutation of the chromosomes that is actually better in terms of longevity than normal chromosomes.
And there’s more. Long time readers of this never-ending story may remember that I’ve mentioned several “disease markers” that have been discovered in the years since I got sick. These markers also help predict how bad your disease will be. Some are good to have; some are bad. There’s the zeta associated protein, or ZAP-70 test. Having it is bad; my test is negative for ZAP-70, which is good. Then there’s the CD-38 antigen test, the higher the level the worse the disease tends to be. My levels are a bit high, not good. And there’s the beta-microglobulin test. Low levels are good; mine are slightly elevated. And there’s the antibody mutation; the IgVh test, which is, curiously, good when it’s mutated and bad when it’s not. Mine is mutated, which is good. So overall my disease markers are mixed.
The researchers have found that by measuring all your “markers” they can predict how aggressive your disease will be. The worse the markers are, the more aggressive your doctors will tend to be, both in terms of earlier treatments and strength of chemotherapy, since they know the disease will advance more rapidly.
So the reason for this lengthy explanation of disease markers and such is to help explain why I’m not being treated right now. My markers are not all bad. Indeed some, like the IgVh mutation, are considered very good. So even though my disease has relapsed and is slowly getting worse, my docs are fairly confident that we can safely wait at least a few more months before we begin treatments again as long as my white blood cell counts don’t go up too fast. But before all these markers were discovered, all they had to go by was a patient’s white blood cell count, lymph node sizes and symptoms.
In the meantime I have continued to work with the Leukemia and Lymphoma Society, hanging around with members of their Team In Training. I have been one of their Honored Heroes (as they call members who have or who have had leukemia or lymphoma) for a few years now, but after I recovered from my last chemotherapy I got more active in their programs. I started walking farther and farther with them, finally working up to doing a half marathon in May of last year. And since that time, I have finished five half marathons, all within the last fourteen months! Many of you have helped me do some fundraising for several of these events. I just completed my last half marathon in early June when I went to San Diego for a fantastic event with an incredible 30,000 runners doing either the half or full marathons. (The crowd was so large that, though the starting gun went off at 6:15 AM, I didn’t cross the START line until 7:05. I was toward the back of the crowd as it slowly shuffled toward the start.).
Anyway, all that talk about doing multiple half marathons makes my next bit of news hard to believe. I had just finished my fourth half marathon in May and was preparing for another in San Diego in early June when I had a follow up appointment with my cardiologist. I’ve been seeing a cardiologist regularly since I had an echo cardiogram done back in 2004, at which time they found my mitral heart valve was apparently deteriorating (see October 7, 2004 of my Adventures With Leukemia blog, link below, for the details). It was initially thought to be bad enough that I might need surgery soon. But subsequent testing showed it wasn’t quite so bad. Moderately bad, perhaps, but not seriously bad.
So I get my heart checked every six to twelve months. When I saw my doc in late May I told him I felt like I was doing, overall, better than I had in a while. Though I quickly get short of breath if I try to run, I can walk long distances without too much difficulty. So he ordered a routine echo cardiograph (an ultrasound of the heart). Now, usually, after he looks at the echo cardiogram, he says something like, “Looks good, see you in six months.” But, this time he said, “Hmm, let’s go in the other room and talk.” I didn’t like hearing that.
It turns out that my mitral valve is indeed deteriorating now, and it may be that I really am getting to the point that I need open heart surgery. That’s just so hard to believe, since I feel so relatively normal, frequent fatigue notwithstanding. But things have changed since my mother had her mitral valve replaced twelve years ago. First, they now try to repair the valve rather than replacing it. That’s wonderful when they can do that as then you don’t have a metal valve in your heart and don’t need to take a lifetime’s worth of blood thinners. Secondly, they now try to do any needed surgery before you absolutely “need” to have it done, as you’ll be healthier and the outcomes are generally better. So, they won’t want to wait until I’m in heart failure and sick from my cardiac disease before they do the surgery. The issue, then, is when am I about to go into heart failure and “need” the surgery? There’s a certain amount of guesswork involved in this and if any surgery needs to be done in the next year to eighteen months or so, it needs to be coordinated around my next chemotherapy. And when will that be? Well, we don’t know that either.
So, what will happen with both of these issues is that we’ll follow them and see what I need to do first. If it’s the chemotherapy, I’ll have to hope that my heart doesn’t get much worse during the months of chemo, because the cardiac surgeons won’t touch me if I’m doing chemotherapy. But if my heart does get worse during chemo, then we may miss the window of opportunity to have the surgery done before I go into heart failure. If I need the heart surgery first, I’ll have to hope the leukemia doesn’t relapse too fast and cause me to need chemotherapy while I’m recovering, as that really could impact my recovery. Anyone know a good fortune teller?
Anyway, while we’re waiting to see what happens, I’ve signed up for two more half marathons, one in Denver in October and another in Dallas in December. We’ll see if I actually get to compete in these events.
Let me end with some good news. Crazy news, actually. As I’ve already told some of you, whenever I see a charity or some other worthwhile organization selling raffle tickets, I buy a few. I have bought raffle tickets for trips to Germany, for handmade quilts, for vacation packages, for meals at fancy restaurants and so forth. I never win anything and that’s okay. I just feel like I’m supporting the charities with my raffle ticket purchases and I don’t mind doing so. So when the Ft. Worth Symphony Orchestra had a raffle recently I bought some tickets. I already support them as a season ticket holder and as a donor anyway, so why not buy some raffle tickets?
Well, on July 6th I got a call from the president of the Symphony. I wondered if I was behind in my pledge for the year or something. But, no! She called saying she had good news. At the annual 4th of July concert in the botanical gardens in Ft. Worth, they had drawn the name of the winner of the raffle, and the winner was me! And so, what did I win, you ask? I won a completely restored 1968 Cadillac convertible, black paint with black leather interior, chrome wheels and “power everything”. This thing is huge! It’s about 18 to 19 feet long and has a 7.7 liter V-8 engine that puts out about 340 horsepower. Now, that’s all well and good, but I have no place to put it. I’m currently looking around for a place to park it, as we only have a two car garage and we already have two cars. We can’t generally park cars on our driveways around here (home owners’ association rules, of course). So, it’s going to be interesting. Fun, but interesting.
And that’s all for this update. But there’s always more.
Saturday, March 6, 2010
Dave’s Great Adventure, Book Four
Chapter 1, Verse 1
March 6, 2010
I had written a follow-up story to add to my DGA series. All I had to do was proof read it, polish it a bit and send it out. I mentioned all the good news we’d gotten. Then we got a phone call.
Our trip last month to M. D. Anderson in Houston was uneventful. I enjoy the trips out there as I like the “road trips” and the drive. Interstate 45 isn’t the most scenic highway in America but it’s a nice, open and fairly lightly traveled road, where you can “exercise” your car, if you care to do so. This prior autobahn driver likes to “exercise” his car when given the opportunity! Plus there’s some pretty good barbeque to be had along the way.
The visit in the I had some blood drawn the day before the actual visit and all the tests that had been completed were normal. That’s a nice thing when my blood tests have been abnormal for so long. My physical examination was normal, too. In fact, things were so normal that my doc, Dr. Keating, said I could wait for a year to come back! Whenever your cancer doc says you can come back in a year, that’s good news indeed. I did mention that I was still having somewhat of a mental fog, the “chemobrain” that I have mentioned on several occasions, which makes it hard to concentrate and multitask. It’s a bit like having ADHD, I suppose, as I have trouble reading a whole newspaper article before I want to skip to something else. And I can’t usually do the MENSA quizzes in the airline magazines anymore. Anyway, they offered me Ritalin to treat the problem, but I declined. I think that makes you rather hyper. Kathy doesn’t need to put up with me being hyper, too.Clinic went very well indeed.
Things were so normal that after my physical exam was done, checking my lungs, heart, lymph nodes and such, they even canceled the that was scheduled for later in the morning. Now, as much as I enjoy reading the clinical pathology reports on my , I didn’t miss getting my hip bone “drilled” again. We decided to do a test called a “flow cytometry” instead, a blood test that examines the white cells looking for signs of leukemia.
While I was with Dr. Keating I asked him about the significance of the negative PCR test which had shown up on my bone marrow biopsy last August (which could find no evidence of leukemia at the molecular level). He told me that with the mutated gene I had (see my story entry [below] from September 13, 2006) and a negative , I had probably a 75% chance of being in remission in TEN YEARS! What incredible news that was. What a “high” you get when you hear things like that!
So, leaving the clinic in a great mood, we went by the lab to get my flow cytometry blood drawn and then headed back home.
But a few days later, I got a letter from the leukemia clinic saying I was to come back, not in a year, but in six months. I figured there had been a mistake and called the research nurse, who handles my case. I got her answering machine and so left a message asking about the six month visit and, additionally, if she could mail me a copy of the flow cytometry test results, as they never come back until I’m long gone from Houston . Later that day Kathy and I were out at her physical therapy appointment, since she’s still having those three times weekly following her second knee replacement surgery. During our absence my Houston nurse, Ana, called back and left me a message, saying that, yes, six months was the correct interval and that I should call her to talk about the “flow.”
Now, it’s not generally good news when you’re asked to call back to discuss a lab result from your leukemia doctor’s office. When things are normal, the message usually is, “We’ll put a copy of your labs in the mail.” So I called her back. Ana gave me the unexpected news that my flow cytometry test, after being absolutely negative for the last eighteen months, was again positive, and showed the presence of leukemia cells. This was completely, totally unexpected, as I’d been doing so well. I had the negative PCR test just six months previously and I had otherwise normal blood tests. But the flow cytometry test can detect a single leukemia cell among something like 10,000 normal , and apparently now seems to be showing about 2% abnormal cells. Wow! From such a mental high with the good news of the previous week, to such a low, finding out that the disease is still stalking me. Looks like I beat the odds, in a way. I’m in the other 25% that won’t be in remission in ten years.
But these highs and lows are what this disease has been doing to me for years now. I was so very low when I found out I had leukemia; then high when I first went into complete remission, imagining that I might actually be cured. Then low again when it recurred a year later. Then high again, but not quite so high (because I’d been fooled once before), when I went into remission again after my second course of chemotherapy. Then low when it came back yet again in eighteen more months. But, then after this most recent aggressive, experimental course of novel chemotherapy which made me PCR negative, I was very high, again deluding myself into thinking I might either be cured or have a long, durable remission. And now…low again. But, there will be highs again; I just know it.
So, for now we wait. I’ll be getting blood tests every couple of months or so to see how rapidly my go up. I’ll be seeing my local doc in about a month and seeing Dr. Keating again in Houston in six months, unless things change more rapidly than expected. It’ll be interesting to see what he thinks we should do the next time we need to treat me. We’ve pretty much used up the “easy” things, with the three experimental therapies we’ve tried. But, Dr. Keating mentioned to me in another conversation last year that his group expected to begin clinical trials on yet another experimental therapy sometime this year, one that they thought might lead to a cure. That should be interesting, and perhaps I’ll qualify for that new drug protocol. Plus, we can still try a bone marrow transplant when all else fails, though that entails some significant risks.
I previously mentioned that during my remission I had gotten more active in the Team In Training, and had done a few half marathons as fund raising events for the . And in January, I signed up for yet another event which I expect to do in June. But even though I’m now relapsing and the disease is returning, I still hope to be able to complete this event. I have pledged to raise over $3000 this time, and I would like to ask for your help in raising this amount. I plan to contact many of you individually, but if you’re able to help me with my task at this time, I’d like to ask you to go to my donation web page and help me by donating whatever you’re able. No amount is too small. Like I told my teammates recently, I hope the researchers can find a cure for this disease in my lifetime. But trying to find a cure will be very, very expensive. Please help me raise some of the funds that it will take to cure this disease.
Thanks for any help you can give me and the Leukemia and Lymphoma Society. I am deeply and personally grateful for all the wonderful folks who have been helping me, praying for me and supporting my causes over the last several years. I hope I can count on your support in the future.
More to follow…there’s always more, isn’t there?
Friday, February 12, 2010
Dave’s Great Adventure
Book Three, PS3
February 12, 2010
Recently my mother received a very late Christmas card and letter from some elderly friends of many years ago. The letter started out, “I better get a letter out to my friends or else everyone will think we’re dead.”
That’s rather where I am right now. I have planned an update, have started composing an update in my head, and have promised many friends that an update was coming…for many months now. As I’ve said in other delayed reports in the past, when I am silent for too long, some folks have to fear for what is going on, and so I have received a few tentative “How are you doing?” type messages, to which I have apologized for being so tardy and promised to get a message out. I have been busy, but not so busy that I couldn’t have gotten at least a short message out if I had just sat down and done it.
Anyway, the short answer to the question about how I’m doing since I completed my last round of chemotherapy is, “Just fine!” I have been in complete remission now for almost 19 months. That’s significant, as I’ve now been in remission for a longer period of time than ever before, my previous long remission having been 18 months after my course of intense therapy in March 2004. And although I have had a return of some of the “chemo brain” effects, with problems remembering things and in trying to multitask, my strength is as good as it’s been in many years, as I’ll tell you in some following paragraphs.
And the remission is even better than “just” an eighteen month remission! I had a bone marrow biopsy last August 2009 and at that time my docs at M. D. Anderson couldn’t find leukemia in my blood, or in my bone marrow, and couldn’t even find any evidence of disease at the MOLECULAR level with a test called a PCR probe (polymerase chain reaction)! I know of another CLL patient, a journalist who also sees Dr. Keating (my doc at M. D. Anderson), who achieved PCR negativity ten years ago and still is in remission. That’s not to say he’s cured, but that’s an amazing stretch of remission. In fact, he says in his writing that he is, for all intents and purposes, cured. But, I imagine that he still gets tested periodically. Maybe I’ll ask Dr. Keating about him the next time I see him and see if our doc thinks he’s cured.
Now, I’m very, very happy to be PCR negative, but I still have to go back and be tested periodically. In fact, I have to go back to Houston next week for yet another bone marrow biopsy, to see if there’s any evidence that the disease has returned. Wish me luck!
Several things have happened over the past year since I last sent out an update, things that many of you may find of interest. The first concerns my wife Kathy, whom many of you know. Now, Kathy has cared for me through every day of every course of the therapy I’ve had since I got sick back in 2002. Well, it has been my turn to care for her recently. Kathy has an inherited trait for degenerative arthritis and has had increasing pain in her knees in recent years, just as her mother and sisters have had. One sister and her mother ended up with joint replacements and so, in the last few months, Kathy has had both knees replaced, one in September and the second one last month. She is recovering very well and things are on track for a complete recovery soon, but her surgeries have given me the opportunity to care for her as she has done for me for so long. She’s currently going to outpatient physical therapy and is doing just great, less than four weeks after her second surgery. She rarely even uses a cane anymore. I’m not much of a househusband but I’ve been able to be trained to do laundry, clean up the kitchen and warm up some food while Kathy’s been laid up.
Back to my chemotherapy; I did very well during the time I was getting the drugs and in the months thereafter, except for a bad bronchitis/pneumonia I had about a year ago, but my immune system has taken quite a hit. One of the drugs I took, called Fludara, specifically targets white cells, which of course are the cells which help protect me from infections. Well…. Last year Kathy and I went to Antarctica on an “expedition,” which was just wonderful. I recommend such an adventure to all of you. But, during the course of our trip, we were in daily contact with penguins and their, uh… guano… or excrement. The shores around their colonies were often coated in the stuff. Now, we had rubber boots and were protected from the stuff (unless we slipped and fell in it, as some folks did) but at the end of each trip to the shore, we had to take our boots off. And even after the boots had been cleaned upon our return to our ship, they had some remaining “stuff” on them. We inevitably must have gotten some on our hands as we removed our boots, at least on a microscopic level. Anyway, Kathy probably got some penguin poop on her hands, and then into her eyes, because she developed a bad eye infection. The ship’s doc had some simple antibiotic eye drops which slowly seemed to take care of the problem, until we got home, when it seemed to recur. So we went to a doc here in town to have her re-evaluated and get some different antibiotics, which worked quite well.
So, just as she was getting over her infection, I got it. I treated myself with the same stuff that had worked so well on her, and it did work well. But now, it recurred in Kathy. And then when I finished my antibiotics, I got it again, too! We ping-ponged the infection back and forth for about ten weeks, despite cleaning the whole house, washing all the bed linens, washing down sinks, light switches, counter tops, etc. Then, during the time all that was happening, my ophthalmologist took a look inside my eyes and discovered that I also have a fungal infection called histoplasmosis in/on my retinas! Now, there is no good treatment for this. If it starts to spread, as it can, they can use lasers on the spots (destroying the retina with the infection) or inject the spots of histoplasmosis with drugs, like the Avastin I was getting during my most recent chemotherapy. So far, in the months since this new infection has been discovered, it has not seemed to spread at all.
And, during this time, I started having clusters of growths on my hands and right forearm. That was curious, so I went to a dermatologist to have a biopsy done, which showed that I was developing warts on my hands and arm. I’ve had some problems with warts on my hands since I first found I had leukemia, and getting warts is not uncommon for chemotherapy patients since our immunity is compromised, but I was getting them in places I’d never had them before. So, I’ve been going to my dermatologist for months now and have had probably a dozen treatments to destroy over 20 warts, and we still have a few persistent ones to deal with.
And then, as if the eye problems and the warts weren’t enough, the irregular heart beat I’ve had for years got much worse about this time. I was having irregular beats throughout the day, predominantly a rhythm called “bigeminy,” where you repetitively have a normal heartbeat immediately followed by an abnormal heartbeat. This led to several consultations, prolonged heart monitoring and eventually starting more medications, along with talk of possibly going into my heart to “ablate” the abnormal part of my heart that is causing the problem. I’m doing much better now, and my heart rhythm is more normal than when this problem first developed, but I still have frequent problems with the bigeminy. I’ll be seeing my “arrhythmologist” again in a couple of weeks to see what our next step is.
Last year, just before I stopped writing, I had mentioned that I was doing more and more with the kind folks from the Leukemia and Lymphoma Society’s Team in Training. I had started doing some of their events and had even signed up for a half marathon. I’m extremely pleased to tell you that I was strong enough to be able to complete that half marathon last May, and then in a fit of irrational exuberance, I went and signed up for half marathons in Denver in October and again in Dallas in December. I’ve been raising funds when doing these events and have been pleased to have completed both the half marathon walks without great difficulty, but also have been able to raise more money for the society. And, I’ve been doing something even tougher (for me)…I’ve been doing a bit of public speaking at some LLS events, at recruiting meetings and at pre-marathon dinners. It’s tougher for me, probably, because I’m prone to terrible stage fright when in front of crowds, but I’m happy to say that I’ve done reasonably well in my attempts at public speaking.
And, I’ve gotten so “into” these events that I’ve signed up for yet another half marathon for later this year. In June I plan to do the San Diego Rock and Roll Half Marathon as yet another fund raiser for the LLS. I think that I’ll take Kathy out there and I’ll do the event and then we’ll have a little vacation out there as well.
And one last thing; my mom, whom many of you know, just celebrated her 90th birthday last week. Happy birthday, Mom!
And I think that’s enough of an update for now. I’ll be back when I have more news. In fact, I may be back rather soon to report on the results of my upcoming bone marrow biopsy.