I want to take a moment from telling my little stories to touch on something that’s very dear to my heart and important to the lives of many people across the world. That’s the topic above; Supporting Leukemia Research.
In my “career” with this disease, which is now approaching fifteen years, I have intersected with leukemia research many times and in many forms. I’ve been a beneficiary of its results, I’ve been a participant in the studies of new drugs and new combinations of drugs and I’ve actively supported the research efforts by making personal donations and by raising funds to help major institutions further the studies of better ways to combat our diseases.
When I first fell ill, in the spring of 2002, I was extremely disappointed to find that there really wasn’t much out there that was very good for CLL. My dad had died of CLL 25 years previously, and I found very quickly that despite a quarter century of study, there still were no really good treatments available. The best thing going was a combination of fludarabine (Fludara) and cyclophosphamide (Cytoxan). But this combination was, in many ways, like taking Tylenol for pneumonia; the drugs lowered your white count and made it look like you were doing better (much like Tylenol would lower your fever and make you feel better if you had pneumonia) but they really didn’t do anything about the disease. It always came back!
But that very year, my doc in Denver where I lived at the time, read an article about Dr. Keating’s new groundbreaking research into using the Fludara and Cytoxan in combination with a newer drug, rituximab, which was not yet even approved for CLL. He reported incredible results with amazing rates of complete remission, rates never seen before. And many of the remissions were very extremely durable. Some folks in the original studies, from over 16 years ago, are STILL in remission and are cautiously being said to be “cured.” This new “FCR” combination rapidly became the gold standard for the treatment of CLL and it rapidly became the frontline therapy world-wide. And as it was, I too received the FCR in Denver in late 2002, despite its not being yet approved by the FDA for my disease. I was probably the very first person in that wonderful town to derive its benefits. By the way, rituximab was developed, in part, with the support of the Leukemia and Lymphoma Society.
In 2008, I was relapsing again, and by now was being seen by Doctor Keating himself, in Houston. It came time to treat me again, but when you’ve relapsed from CLL a time or two, there are no “best” treatments available. Just lots of confusing choices to decide among. But Dr. Keating told me there were a couple of studies available. I signed up for one, which was to involve harvesting my CLL cells, treating them to make them appear “foreign” to my body, and then reinfusing them so my own immune system would start killing off leukemia cells; in essence, immunizing me against my own disease. That was the theory. I was all set to begin this study when it apparently went awry somehow. I don’t know details at all, but suddenly that study was off the table. It rather sounded like there was an “adverse event,” as they say in med-speak, with another patient who had enrolled earlier than I had. But, that’s what happens sometimes in these trials. You don’t know before you start exactly how they’re going to turn out.
So, I instead signed up for another study which was open at the time, one which combined the previously mentioned “FCR” with an antibody called bevacizumab (Avastin). I took the combination for six consecutive months and at the end, was in a complete remission, one so complete I was said to be “PCR” negative, which meant that they could find no evidence of disease even at the molecular level. I wondered if I might be cured…but I knew better. This stuff just about always comes back.
But I was feeling well and wanted to start giving back to the researchers who were working behind the scenes on behalf of me and so many other folks like me. I had joined the Leukemia and Lymphoma Society and its fund raising arm, Team In Training (TNT) in early 2007 and had attended meetings, given short talks called “Mission Moments,” and spoken to people training for fund raising events, like marathons, half-marathons, triathlons, 100 mile bike rides and much more. I fully appreciated what they were giving up with the time they spent training, coming out early in the morning when they could have been sleeping in, and raising money for the Leukemia and Lymphoma Society. And they were doing it for me! And most of them didn’t even know me.
So in late 2008, to help pay back what they were doing for me, I joined them on the trails, early in the mornings. I started walking, first a mile or two, then three or four, then eight miles and eventually, I was walking (not running!) 13 miles at a time. I was doing half-marathons. And while I was doing all this training, I was asking for donations to the Leukemia and Lymphoma Society from friends, family, neighbors and colleagues. I found myself doing three or four half-marathons a year, and I raised several tens of thousands of dollars for the LLS.
I kept up this pace until mid-2011, when I started slowing down and not feeling well. I did my last half-marathon in San Diego that May and shortly thereafter was found to have greatly enlarged lymph nodes in my chest and abdomen. The disease had come back after three years of remission. And, what was worse was that it had come back as the 17p deletion variety, the absolutely worst subtype of CLL. My longevity at that point, if untreated, was said to be about 12-18 months.
Dr. Keating tried a new drug on me, one that had recently been approved for CLL, one called Arzerra, but we knew going in that it only had about a 50% chance of working in my situation. And, I fell on the outside of the 50% margin. It didn’t help me at all.
But, at that point Dr. Keating invited me to join a clinical trial of yet another new drug, one which had just come out of Phase 1 trials. This drug was so new it didn’t yet have a name. It went simply by its developmental code name, PCI 32765. By now I had swollen lymph nodes in my belly and chest which were up to eight inches in diameter. I looked like I might be pregnant! I had been hearing great things about this new drug and was happy to sign up for this trial. I started taking the PCI 32765 (which became ibrutinib and then Imbruvica) in March 2012 and it started working immediately. I could feel the difference in the pressure in my belly within the first week! It was amazing, truly amazing, to me. Imbruvica, as it’s called now, was also developed, in part, with support from the Leukemia and Lymphoma Society.
After about six months on this miraculous drug, I was feeling much better, except that one major side effect of it was joint pain. I tried to come back to my LLS/TNT teammates but found that each time I tried to train for an event, my joints, and especially my knees, hurt too much. So I had to give up that part of my association with TNT.
But, during the time I was actively doing TNT events and “running” my half marathons, a couple of our kids joined me and walked with me. They also raised money for the organization. And they have continued that practice even after I had to drop out.
Earlier this year when our daughter, Jen, heard that I had relapsed yet again and was going to have to get into yet another trial (as there are still no “best” or any single correct option for treating this disease after you’ve relapsed several times) she told us she was going to sign up for another event and, again, raise money for the Leukemia and Lymphoma Society. And to that end, she’s now been training and fund raising for several months, in preparation for her half marathon to be held in November. She gets up every Saturday at between five and six in the morning to go out and train. It gets very hot in Texas so she runs with her teammates early in the morning before the sun comes up. She and her teammates get nothing out of this except for a T-shirt and the personal satisfaction of knowing they are part of a greater mission. And that they are helping others, like me and so many other leukemia and lymphoma victims, who are waiting for new and better drugs to be developed. We are in never ending hope that a cure will be found to take these diseases away from us and our friends and families.
Meanwhile, for similar reasons our elder son, Jon, is in training for a leg of the Dallas Marathon relay, which will be held in December. He’s starting to train out in El Paso but will come to Dallas for the event and he, also, is raising money on behalf of the Leukemia and Lymphoma Society. He has the same issues with training in the heart and early in the morning. Hey, it’s hot in El Paso. But he’s dedicated. Additionally, he has the burden of training by himself and not with his team, which is 600 miles to the east in Dallas.
I haven’t asked my friends and family for any donations for several years now, but I’d ask that if you can, please donate something to the Leukemia and Lymphoma Society through our kids’ web pages, below. Hey, and if you look at Jen’s page (JMassaviol, below), you’ll also get to see a “cute” picture of me and one of our daughter as well. I will personally appreciate anything you can do for them and the many patients who will eventually benefit from the results of cancer research.
Yesterday I received the results of my recent bone marrow biopsy, and the smear is almost normal. That’s hard to believe after only a little more than three months on venetoclax, but it is known for clearing disease out of the marrow. It’s a great drug. But still…I’m probably looking at a stem cell transplant in the near future. I got a call from the transplant team at M. D. Anderson last week, and they’re already looking for a donor for me. I guess Doc Thompson has been in touch with them. I’m supposed to see them in a few weeks so we can talk things over. We’ll see what they have to offer. I’ll get another update out real soon to explain why a transplant may be in my best interests right now, despite the excellent results I’m having with the venetoclax.
Next (really, this time)—an update on our last visit to M. D. Anderson and the logic of pursuing a stem cell transplant despite my doing great on venetoclax.
“They always say that time changes things, but you actually have to change them for yourself.”—Andy Warhol [So, please help change things by donating to the Leukemia and Lymphoma Society through our son or daughter, or any other person you know of who is working for the goal of curing these diseases!]