I've been keeping my health situation pretty much to myself for the past couple of years. I've shared it only with people "in the club" as it were. But as I've reached a milestone in my condition lately, I thought it was time to share it. Feel free to share with friends, but I'd rather it wasn't broadcast in public on twitter or facebook. Thanks.
For those who don't want to read any further, here's the bottom line. CLL is not normally aggressive or lethal. It can be treated successfully for decades. Many patients live into their 80s or even 90s. Mine has advanced slowly over 3 years to the point where my oncologist wants to treat it. I started my 1st low-dose chemo regimen today. So far, no adverse effects, which is great. Stay tuned for updates.
The chronic form of the disease is much less aggressive than the acute forms. Yes, it is leukemia, but it's a highly treatable form of the disease. My oncologist characterizes it as indolent
, meaning "causing little or no pain." When my primary care doctor first called me to tell me what my blood tests had revealed, he said, "If you have to get cancer, this is the one to get." Small recompense, I'll grant you, but welcome anyway.
CLL affects mostly older people. I was diagnosed at age 63. The later in life you're diagnosed, generally, the better off you are. My dear friend, Lisa Adams
, a cancer, grief and loss blogger, currently dealing with stage 4 metastatic breast cancer, says the definition of "beating cancer" is "dying of something else." My oncologist has said as much. "You might die with it, but you won't die from it." That's good news… I guess.
As with other slow moving forms of the disease, like prostate cancer, the treatment protocol can initially be simply watchful waiting. This is because attempting to treat the disease can do more harm than simply letting it alone. I have been in this phase for nearly three years. The primary indicator of the disease is one's white blood cell count or WBC. The normal count in a healthy adult is between 4500 and 10,000 cells per microliter. If you have any kind of infection, however, this can easily balloon to 2 or 3 times that reading. In patients with CLL, the baseline tends to rise slowly over time. Right now, my white count is about 35,000.
I've been seeing my oncologist about once every 3 or 4 months. My WBC has been slowly upticking over that time. Here it's important to note that WBC test accuracy is not very good. Blood tests taken within a couple of days can vary quite a bit. My last pre-appointment blood test put me at roughly 55,000. However, when my oncologist re-tested me at my consultation on Tuesday with his own in-office lab he got 35,000, a difference of 40%!!
At any rate, I'd been having some abdominal discomfort since my last checkup. So that, coupled with my oncologist's lymph gland exam last week, prompted him to send me for a CAT scan this past Monday. It revealed some swollen lymph glands in my abdomen neck and arms, but thankfully, no diverticulitis, which is what I thought had been giving me the lower left quadrant abdominal pain.
At that point, he decided to put me on a low dose of chemo for 5 days to try to shrink the lymph glands and knock my WBC down to something perhaps approaching normal. This is a typical treatment plan for CLL. When the disease advances, it's possible to apply some defensive pressure (as they'd say in the NFL) to push it back to a more tolerable level. Over many years, this approach has diminishing results but it does do the job for quite a while.
So today, I started my first day in a 5 day round of Cytoxan
(the chemo drug) at a low dose, combined with Prednisone
, a widely used and powerful corticosteroid. Of course, when you hear "chemotherapy", you worry about all kinds of bad side effects, but this is a very low dose by cancer therapy standards. I'm about 12 hours into the first dose and not feeling really any adverse affects. And on the plus side, the prednisone is chemically related to the steroids some pro athletes take to juice up their batting averages. So I can report that at the driving range today, i was hitting my 8-iron nearly 150 yards, which is easily 25 yards farther that I normally do. Ok, it was downwind, but still… My primary care doctor, on hearing my oncologist's prescription said, "Oh prednisone? You're going to remember what it was like to be 20 again."
So that's the scoop, friends. To date I have revealed this information only to other "club members", not because I have anything to hide, but because it can put another person in an awkward and difficult position and I really hate to make people feel uncomfortable or obligated to "say something." So don't feel as if you have to. Instead, please take a couple minutes to read Lisa Adams' posts on what to say
and what not to say
to a cancer patient.