Book 5, Chapter 2, Verse 3
Yes, I am a lucky man. Very lucky.
"Richard Fortey [author of LIFE: A Natural History of the First Four Billion Years of Life on Earth] has always found it amusing that centenarians, asked why they've survived so long, tend to credit their habits. The secret to longevity, they'll tell the local newspaper, is a glass of whiskey every day, or hard work and crossword puzzles. None ever ventures that it's a matter of genes and luck."--from The Wall Street Journal
All of us are lucky. The fact that we’re writing or reading these words is, by itself, an indicator of how lucky I think we are because there are so many aspects of life over which we have absolutely no control. We haven’t been on a plane that went down over the Atlantic. Nor have we been in a fatal auto accident. We weren’t in the World Trade Center on 9/11 or in either of the aircraft which were murderously crashed into them. We haven’t contracted a fatal infection. None of us has been murdered in a drive-by, a mugging or a home invasion. In fact, things that happened before we even “were” show our luck, as just enough of our dad’s sperm reached our mom’s ovum, at just the right time of the month, to allow one lucky little tadpole to fertilize it. Then, the fertilized ovum somehow found its way through the maze of our mom’s female plumbing and into the uterus. Many just get lost. And then we implanted in the uterus and grew. Only about half of the fertilized eggs actually survive. We did. We were lucky. We had no control over this process but, for us, it worked just fine.
“Yew arre varry locky to live in U.S.,” said Dr. Strati. Dr. Strati is an Italian physician, a “fellow,” who is working at M. D. Anderson, learning the sub-specialty of oncology and the management of leukemias. We had been discussing my 17p deletion/p53 mutation which we had discovered just over a year before. That mutation made my disease much more difficult to treat and reduced my life expectancy, in the absence of a successful stem cell transplant, to about a year or two. It makes the disease so difficult to treat that in some places, like Italy, apparently, I wouldn’t have been treated at all, or at least wouldn’t have been expected to survive very long.
I was immediately reminded of a patient from Germany whom I had been told about by Dr. Keating, a patient who had come to M. D. Anderson with advanced CLL, even worse than my situation. Her white count had been 300,000, she had a hugely enlarged spleen, low platelets and many other dismal prognostic features. She was in her late 60s, and her situation was so dire that she was not going to be treated in Germany, where, in the semi-socialized medical system they have, your treatment depends on your expected outcome and the years of survival that might be anticipated as a result of your treatments. This patient, said Dr. Keating, was in the “no go” category in Germany, as she was too old and her expected longevity was too short for her to qualify for therapy. So, she had come to Houston and to Dr. Keating looking for help, where she was included in the Phase I part of the PCI 32765/ibrutinib study in late 2010. And, as sick as she was, she has since done extremely well on this wonderful new drug.
My luck however, began about a decade before. I found I had chronic lymphocytic leukemia (CLL) in early 2002 and at that point I was just certain I had only five or six years to live. After all, my father had this disease and lasted just five years with it. And there were no good treatments available. Yes, there were many, many treatments available, and many of them could induce at least a partial remission but as a rule, the disease almost invariably came back and the patient still died within five or six years, treated or not. That led to a school of thought that it wasn’t worth doing the treatments at all. There was a lot of “watch and wait” going on. Or, as we patients called it, “watch and worry.”
But, within months of my diagnosis, while my doctor and I were casting about, trying to figure out what we should do or not do with all the unsatisfying options available, a paper was published from the researchers at M. D. Anderson describing a new three-drug combination that they had tried experimentally on about 200 patients. It included a drug not even approved for CLL, a drug called Rituxan (rituximab) and two other standard CLL drugs, Fludara and Cytoxan. The results were incredible. They had achieved 80% or so remission rates, and this was in a time a 30-40% remission rate with other drug combinations was considered to be very good. This new combination was called FCR, for the initials of the three drugs and it soon became the “gold standard” in the initial treatment of CLL. That article led to my first bit of luck.
The lead investigator was a doctor named Michael Keating, and I was intrigued by his involvement in this study, so I began reading other articles and studies in which he had been involved. I quickly learned that he was a power within the CLL community and was involved in many, many studies of drugs designed to fight or even hopefully cure the disease. I saw his name everywhere; on articles on-line, as a speaker at scientific meetings, in interviews I could watch on-line and so on. This guy, I figured, is one of THE experts in the world regarding CLL. I need to follow what he’s doing.
Anyway, we used Dr. Keating’s FCR stuff in 2002 in Denver, and it put me into an absolutely complete remission. A couple of years later, when the leukemia was coming back we used another combination including the Rituxan to put me into remission again. Shortly thereafter we left the Denver area and moved to Texas, to be closer to our family (because I figured I’d be dying by 2006 or 2007 or so). And about this time the disease recurred yet again. I knew it would; after all, by definition, my disease is incurable.
In late 2007 I was needing treatment again and my doc in Denton was rather out of ideas. There were no great options for treating patients who needed a third round of therapy for CLL. He suggested sending me to M. D. Anderson to see what they might recommend for someone like me. He asked who I’d like to see down there. Now, I was surprised to be asked who I wanted to see, figuring that I’d be assigned to whomever they wanted to send me to, some resident or fellow who happened to be on rotation there. But, having been asked the question, I said, “Dr. Keating?” in a plaintive, hesitant way, as I figured that there was no way at all I’d be able to get in with a doctor of his stature and prominence. I thought that would be like asking Steve Jobs to come over to fix my Mac computer.
But, amazingly, I did get an appointment with Dr. Keating, which led to six months of experimental chemotherapy, putting me back into a three year remission. And when that finally failed last year, it led to another experimental trial of a new drug. But by then, I had the p53 mutation and, really, nothing was going to work very well.
That’s where I was last February when my most recent chemo failed. I had been through four different courses of chemotherapy over ten years and was left with no good options besides that of a stem cell transplant, which could be potentially curative but also could be a lethal choice. About 15-25% of folks getting stem cell transplants of the kind I’d be needing die of the procedure or its complications. I had met with the kind folks in the M. D. Anderson transplant clinic to start setting up such a procedure when my previous bits of luck led to my most recent lucky streak.
The day after meeting with the transplant coordinators I met again with Dr. Keating. He had said he’d try to get me into a new drug trial that was about to open and he did! He was able to get me into the newly available PCI 32765/Rituxan drug trial, a study including only forty lucky souls and the one which I’ve now been in for five months. It has so far allowed me to avoid a stem cell transplant and allowed me to live an almost entirely normal life.
So, my luck started when my doc in Denver, in 2002, read an article authored by Dr. Keating which led to my getting the FCR treatment that year and led me to start inquiring about Dr. Keating’s CLL studies. That led me to ask to be seen by him when I went to M. D. Anderson in 2007 and that led to my ultimately being lucky enough to be one of only forty pretty sick patients to be selected into this near-miraculous drug study.
And the results continue to be astounding. I went back to Houston in June and had another round of tests, including a bone marrow biopsy, CT scan, chest x-ray, and blood tests. The results are spectacular. The bone marrow biopsy shows that, pre-treatment, 69% of my marrow cells were leukemic but after just three months on the drug, that number has been reduced to 23%. Similarly, pre-treatment I had numerous grossly enlarged lymph nodes, up to the 16cm. mass (about seven inches wide) I mentioned in my last message. After the three months of therapy, all my tumors have been reduced to about 12% of their previous size by volume (they have been reduced by about 50% in all dimensions). The blood tests show continued dropping of my white cell counts and stable red cell and platelet counts.
But not only has my disease been considerably diminished already by just a few months of therapy, but during this time I also have found that my chronically swollen, painful and frequently infected sinuses have healed and have not been a problem in months; warts on my hands, which I have been battling for ten or twelve years have almost entirely disappeared; a chronic cough and frequent wheezing I’ve had for a couple of years has cleared up; and my hair, which has always been very fine and straight is getting increasingly coarser and is starting to curl!
The other side effects continue to be a nuisance but are tolerable. I’m still having intermittent joint pains in my hands, feet, ankles and wrists. But the pains, when they appear, last just four or five days at a time and then go away for a few days, before moving on to some other joint area. I can generally take some anti-inflammatory drugs and go on with my life. Additionally I’ve been having muscle cramps, spasms and twitches fairly regularly. I have been taking magnesium supplements in several forms to combat these symptoms but the folks in Houston told me to try tonic water. Yeah, tonic water! Tonic water contains quinine which is a long-time remedy for leg cramps and restless legs. So, I drink a couple of cans a day and take a little magnesium in the form of a Maalox antacid and I do pretty well. Sure beats dealing with the complications of a stem cell transplant.
Here’s another example of how lucky I think I am to be in this study. In the first phase of the PCI 32765 study, it was known, or at least assumed, that the drug might be a good lifetime treatment for CLL, but was unlikely to be a cure. Since it wasn’t to be a cure, two of the original participants dropped out of the study and opted for stem cell transplants. One of them has since died of the transplant. I haven’t had to face that decision yet, thanks to the fantastic results of the PCI 32765.
Now, these are still very short term results, as I’ve only been on this drug for five months, but most of the folks who started the Phase I study back in October 2010 are still on the drug and at this point, many of them have been on the drug almost two years, and still no serious adverse effects have been noted. Amazing.
Yes, I am so fortunate to live in the U.S. If I had been born in Uganda, Peru, China, Russia or perhaps even England or Germany or dozens and dozens of other countries across the world, I’d either be dead or dying by now. And of course, I had no control whatever over where I was born. It just happened that way. I’m a lucky man. I’m being watched over by Someone. I don’t know what I’ve done to deserve this Gift, but I’m eternally grateful and hope to live my life in a way which justifies what I’ve been given.
I’m going back to M. D. Anderson next week for the last of my monthly infusions of Rituxan. After that, I’ll be solely on the PCI32765/ibrutinib, probably indefinitely as long as it’s continuing to work. We’ll be getting periodic bone marrow biopsies, CT scans and blood work, but our lives will no longer be so rigidly planned around our monthly trips to Houston. More later.
[--Over lunch a couple of days ago, Mike and I were talking about how lucky we were. We both have lethal diseases. He has lung cancer which has spread beyond his lungs and I have an incurable leukemia. There are no cures for our diseases, but there are treatments and we’re both currently undergoing novel experimental therapies. But the reason we feel so lucky is not just our access to these experimental treatments, but it’s because we’ve both had good lives. We’re both Vietnam vets and both of us saw buddies and brothers in arms who came back from the war in a box with a flag draped over it. We came back intact and have been able to have another 45 years of productive lives with family and friends, 45 years our dead buddies didn’t get. And, we’ve been able to live quite a bit of time beyond the dates of our diagnoses, years that I count as “bonus” time, as you live your life differently when you’ve been told you have an incurable, deadly disease. You really do. Life feels different and different things are important to you. We’re lucky to have the opportunity to have all these extra years. And if we reach the point where there is nothing else to be done for our diseases and it’s our turn to check out and get into the box with the flag on it…well, it’s been a great ride.]
“Flower, don’t be proud of yourself. Eventually you will fade.” --Afghan poem.