Today is my birthday. I’m 64.
This journal has used the occasion each year to keep my friends updated with the status of my battles with leukemia and this year is no exception. As it turns out, this year’s report comes as I get ready to fight the most important battle I’ve ever faced.
Leukemia has been part of my life for 8½ years. I’ve beat it back each time the mutant cancerous white cells tried to overcome my body’s defenses. Now the fight has reached a critical crossroad. My next choice of treatment will probably determine how many more updates like this one I’ll get to post.
I’m betting there’s a lot more whinging left in me.
Here are the latest dispatches from the front. Seven-months of chemo treatments – the third round of chemo since I was diagnosed with chronic lymphocytic leukemia on September 9, 2003 – bought me a wonderful three-year vacation from the cancer of the lymphatic system. But this winter, quite suddenly, it came back.
The news was not unexpected. CLL is still incurable and the object of treatments has been to stabilize the disease and buy enough time to wait out the plodding process of finding, testing and approving new and better drugs. Although it’s the most common of adult leukemias, CLL is still relatively rare and has been officially given “orphan” status, which gives drug companies some breaks researching drugs they probably won’t make much money on. This has turned out to be a real stroke of luck since almost everything known about CLL when I was diagnosed has turned out to be wrong. (No wonder the drugs used to fight it didn’t work.)
The drug given me three years ago was invented by the East Germans 60 years ago. Originally used in World War I when it was called mustard gas, it has returned as part of a combination of chemo drugs with a modern genetically engineered monoclonal antibody called Rituxan that made it somewhat more effective. We hoped for miracles but that faded quickly as I saw fellow survivors post news of the return of their disease on the web-based bulletin boards used by patients to follow medical news. The disappointing tsunami of relapses began 18 months ago and quickly gathered speed.
Most doctors will tell their patients to give chemo another try because it’s the only tool they have and it might buy some more time. My fellow survivors also can pray for the rare but possible “total remission” that can mysteriously come at any time.
[Since almost all remissions eventually fail to last a full lifetime, doctors have always avoided use of the “CR-word” and now call remissions the more accurate but far less-hopeful “Progression-Free Survival.” And while we’re at it, let’s get this “CLL is a Good Cancer” myth straight. Many doctors tell newly-diagnosed CLL patients that many victims live a full lifetime without ever needing treatment. That’s accurate – but there are several genetic marker tests that can quickly determine if a patient falls into that lucky category (although recently published research questions their accuracy). I understand why many doctors use the half-truth as an easy way out in the emergency room. You can take my word for it; it isn’t an easy moment when you’re first told you have leukemia. I was fed the “good cancer myth” for weeks even though there was no way it could have been true since my CLL had been discovered because it had triggered a critical case of auto-immune anemia (AIA). If I was a candidate for the good leukemia, I won’t have had AIA. It was much easier to grab onto the myth instead of beginning to research the truth. It took me three months to work up the courage to learn what turned out to be vital information I needed to keep me alive.]
The big problem CLL patients face is that everything that is known about the cancer is changing so quickly. Most oncologists treating victims also treat patients with many other cancers like lymphoma, non-Hodgkin’s lymphoma, and a half-dozen other forms of leukemia. Many still use chemo as their main form of treatment. Other doctors have more time to keep up with new research that pours in every day. Here’s an amazing fact, and I swear it’s true: Every time I’ve had to decide what treatment to choose, I’ve asked at least two other doctors their opinions. Every time, and I mean every time, they have come back with different opinions. This has happened at least six times in the course of my experience. [I’ve had three major arguments with doctors upset that I sought another opinion. And I’m talking about major fights complete with threats and screaming and accompanied by large doses of professional guilt trips thrown in. But that’s another story, probably a book, which should be titled: “How to Argue with Your Doctor and why you must if you want to stay alive.”]
Which brings us back to chemotherapy. Most oncologists are still prescribing chemo as their first-line treatment even though the practice seems headed to the scrapheap of bad medical ideas like bleeding and maggots. Most of my doctors now agree it’s been eliminated from my list of possible treatments.
First of all, chemo loses its effectiveness each time it’s given. They only work half as well the second time around. And although there are chemo drugs that are great at killing cancerous cells but not so good at picking them out from the body’s healthy cells. They are armed and dangerous crazed serial killers let loose in your body. To seal the deal, the last chemo drug used to fight CLL that I haven’t tried yet has a nasty habit of triggering new outbreaks of AIA, which we already know I have a problem with.
So, while a few of my doctors are telling me to try chemo again, most of them have told me that I’ve had my fill of chemo drugs and that treatment has been eliminated from my list of possible therapies. Previous treatments have damaged my bone marrow to the extent that another round will leave my body without enough healthy marrow to ever recover. During the past two weeks of conversations with doctors, nothing has upset me more than the look on Marcia’s face when the director of New York Presbyterian Hospital’s CLL research program that another round of chemo would give me “another year.” I already knew that but then he deflated my hopes when he said there was a drug company testing a promising drug that seemed perfect for me but there were no openings in any of the on-going programs. He said there might be new tests I might be qualified to get into but they might take months to be announced. He wasn’t sure I had months left.
It sounded like I was out of options. It sounded pretty grim, right?
No. Not grim. Hope was just around the corner.
For the record, with apologies to Gary Cooper, I might have been given a bad break, but I consider myself the luckiest man on the face of the earth.
Lucky because of the team of doctors I’ve assembled during my battle. Lucky because I live in New York where the best hospitals in the world compete for pieces of the most promising clinical trials. Lucky because I live at the very moment in time when researchers have stumbled onto some of CLL’s secrets and have begun to use that information to fight the killer. And most important of all, lucky because my dear, loyal, talented and beautiful wife, Marcia, has got my back. Knowing that keeps me going. I love her more than she will ever know.
So the doctor, who was to be my last chance to get access to this miracle drug, came up empty. There were a couple of bad days ahead. But I need a lot more time to spend with Marcia, so I stepped on the gas and shifted into another gear,
Then, late one afternoon a week ago, my luck returned. I got a call from Angelica, a P.A. with Dr. Kanti Rai. I’ve consulted with Dr. Rai for all eight years of my battle with CLL. For those who have read this web site from the start, I called him “the Wizard” in earlier posts. He’s acknowledged to be the best CLL doctor in the world. Angelica told me Rai had just been awarded 12 slots in a clinical trial that featured the drug I needed and craved. I told her I would come to the office in a few days because I first wanted to honor an appointment I had at New York Hospital.
Angelica’s response was direct. ”No you won’t,” she said. “You’ll come here Monday. There are 12 open spots and Dr. Rai personally put your name on the list. Everyone who is on the list is coming Monday. Be here or someone else will take your spot.”
So a few days ago I got in my SUV and traveled to Dr. Rai’s research center near Long Island Jewish Hospital in the neighborhood where I grew up. I got a complete physical, instruction on how to go back to usual doctors to get some more forms filled out and signed the papers that nailed down a spot in an experiment that will hopefully keep me alive. Keep me alive for a long time.
I suggest a Google search if you want to learn more about this new drug. It’s called CAL-101. Its short history started when the world began to uncover the truth about how CLL operated. Scientists have discovered that the real dirty work of CLL takes place in the swollen lymph nodes that afflict some victims. I get them. Three years ago, you couldn’t tell I had them until a CAT-scan revealed my aorta was completely surrounded by a thick layer of nodes and another node in my groin was apparently blocking the lymphatic system preventing a nasty wound with cellulitous on my left shin to close and heal.
Right now I’ve got a swollen node the size of a ping-pong ball on the right side of my neck and another one a little bigger than a flattened-out football under my left armpit. Both of them move around and get bigger or smaller on a daily basis. And my spleen is swollen enough to win the award of being the biggest tumor in my body. Luckily, all the tumors thus far aren’t pressing against any organ I need and cause me very little discomfort or pain. Except for what we now know does on inside them, they can be safely ignored.
But we now know the cancerous mutated lymphocytes gather in the relative safety of these swollen nodes where, bathed in what scientists call the nodes’ micro-environment, the bastards literally get instructions on how to stay alive from specialized nurse cells who communicate with their loyal soldiers by means of specific proteins they inject into the nourishing soup. CAL-101 interferes with the army’s reception of these messages. The result is that the tumors get smaller at an amazing pace and, if all goes as planned, disappear. We know CAL-101 is non-toxic and does what it’s supposed to without hurting anything. \\\hat my trial will determine is the safe dosage when it’s used with some other, non-chemo drugs.
The CAL-101 is taken in pill form, usually one or two pills a day. There are some reported side effects, but not many. Finding more side effects is the job of us human guinea pigs. We’re supposed to take the pills daily for a year or until it stops working.
Depending on any limitations placed on me by the manufacturer, I’ll try to keep you informed about my progress through the year. Keep tuned.
I’ve got great confidence in these pills and my shrink has told me that a confident attitude goes a long way to assuring its success.
So succeed it will. Another victory in a long list of battles won in a war that will be lost.
No one has ever won the war, so there’s no point in trying. In this war, it’s the battles that count.
And I promise to win every battle.
Or die trying.
Happy Birthday! See you next year.
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