Moores

Halfway

~ Lee Swanson ~ 17 Comments

I’m at the clinic today, waiting to find out how I feel.

Waiting is the operative word today. Everything is taking longer than it should. I got here at 7:00 so I could be first in line for lab work. The sooner they take the labs the sooner they get the results. The sooner they get the results the sooner they can start the infusion. And the sooner they start the sooner they finish and the sooner I can go home.

In theory.

Today it was 10:20 before they came with the Rituxan. That’s my infusion drug. This is round three of six. Once a month until the middle of November. And there’s also the daily dosage of ABT-199 pills. It’s an experimental Bcl-2 inhibitor. (If you’re here for the first time, I have CLL and am in a clinical trial to try not to have CLL).

So anyway, the lab results look good.

Warning: here’s the part where I go through more numbers than a bookie and a lot of very highly technical scientific data and if you think it’s been boring so far, just wait.

First, a lot of the counts are below normal – white, red, blue, hemoglobin, platelets, alcohol – and not even caffeine is above normal. So that’s good. Probably better if everything is in the normal range, but mostly, low is better than high. My white count was way high and pretty much all leukemia cells when I started the trial and now it’s below normal and mostly, good white cells.

And then there was my exam. I was hooked up to my IV pole so the doctor came to me. And he had the results of yesterday’s CT scan. He went through them one by one. Spleen, normal (it was enlarged before the trial). Liver, same as spleen. I mean it’s normal now, was enlarged before. I know your liver’s not the same as your spleen. One of them does something and the other does something else. Sorry to have to get all anatomical on you, but it’s important to have an understanding of these things. Got that?

Foghorn Leghorn
I say, I say, it’s gone now. Pay attention boy.

The report doesn’t say they’re normal. It says they’re “unremarkable.” I was offended.

And then lymph nodes. It’s blood cancer, but if your lymph nodes are enlarged, those are tumors. Lymph nodes and the spleen (see above) are where leukemia cells are parked. So I’ve got one node that’s 6 millimeters by 4 millimeters, but before the trial was 11 x 10. Another one was 14 x 6 before and it’s gone now. It’s gone now.

He read those off and then said “that’s really amaz.. really good.” In the game of numbers, if your lymph nodes are below five millimeters and your platelets are above 100, you’ve had what they call a complete response to the medication. So that one lymph node is right on the cusp and my platelet count is 104. And I had only had two of the six infusions at the time of  the CT scan.

So far in this trial, 84% of the patients who have completed the infusions have had positive results and 36% have had a complete response. Still really small numbers of patients. But looks like I’m on the way to a complete response. I’ll do a couple more infusions, in September and October and then another CT scan. If the results hold up, then after the sixth and final infusion I do a bone marrow biopsy. That lets them literally count the number of leukemia cells. If it’s a complete response, maybe I stop the pills, maybe I keep taking them. We’ll figure that out if the time comes.

So, yay.

I started the trial in late May and it’s routine now. A handful of pills every morning. And a diary to keep track of what time I take them.

No side effects. Just effects.

If you’re wondering, I feel pretty good. Pretty damn good.

Two

~ Lee Swanson ~ 1 Comment

(May 2007) You learn a lot after you are diagnosed with cancer. You learn some about cancer – you learn more than you want to know about the health care system.

Mine is chronic lymphocytic leukemia—“CLL” to those who either want to sound like they are well versed in medicine, or are afraid to say cancer out loud. Some, who don’t have it, call it the “good cancer,” presumably because it is treatable. And while it is treatable, it is not curable, which is another way of saying they can deal with the symptoms, not the disease.

I had never heard of CLL until they told me I had it. Now I hear about it all the time. It’s like when you buy a new car and you choose the color because you’ve never seen a car of that color before. Then as soon as you drive off the lot, you notice that every fifth car is the same color as yours. Ed Bradley from 60 Minutes had CLL. So did talk show host Tom Snyder and San Francisco 49ers’ coach Bill Walsh. They’re all dead. Lucky me.

CLL is usually discovered in a routine blood test. I went in for my annual physical and my primary care doctor called me the next day to say there was something in the results he wanted to double-check, so could I get another blood test, right away. He made an appointment for me with an oncologist, and said “I want you to see him because you may have a type of leukemia. “

The oncologist was singularly unimpressed. “Internists,” he snorted, “they get all excited when they hear leukemia.”

Well, yeah.

He sent me to the lab for blood tests and said he’d get back to me with the results. I don’t claim to know much about medicine, but I do know you can get lab results in about half an hour if you want them badly enough. So it was at least disconcerting when I didn’t hear anything for two and a half weeks. When I did, it was to confirm the diagnosis.

“What does this mean?” I asked.

“It means you come back in four months and we do another blood test. There’s no advantage to treating this until you have symptoms.”

“OK, but what does this mean?”

“It means you come back in four months.”

“Maybe you don’t understand the question – what does this mean?” I’m looking for the big picture here – the live or die answer. Again he says “come back in four months. If you start to have symptoms, give me a call.”

The symptoms are night sweats, fatigue and swollen lymph nodes. I couldn’t find a lymph node if it was lying on the table in front of me. So when I woke up one morning kind of clammy and sweaty, I called the doctor.

“Night sweats,” I said.

“Did you have to change the sheets? Are your pajamas soaked?” he asked.

“No just kind of dampish.”

“Not night sweats. Come back in four months.”

That’s when I fired him.

Sometimes, managed care means you have to manage your own care.

If you have insurance, you probably chose your doctor the same way I did. I entered my ZIP code into an online database that produced a list of doctors and I picked one within easy driving distance. It’s the scientific method at its finest.

I kept going back because I built some rapport, and most important, some trust in the doctor. So when my doctor referred me to an oncologist, I transferred my trust to that doctor. When he turned out to be nonchalant to the point of disinterest and uncommunicative even in my Scandinavian eyes, I knew it was time to get rid of him.

I thought about calling him in, asking him to have a seat and telling him “things just aren’t working out and we feel we have to make a change.” But if I did that I’d have to offer him a severance package and go to Human Resources. Instead, I cancelled my next appointment.

Since he didn’t talk to me, I turned to the only other resource I had. The Internet. That filled my head with questions. After researching carefully I knew a lot of half-truths and answers that don’t fit my questions. But I also found my next oncologist. It turns out the Moores UCSD Cancer Center is one of seven places in the country that does research on CLL. And the doctor who heads the research here is one of the pre-eminent experts in the world.

My primary care doctor didn’t tell me about that. The cancer center isn’t in his “group” so when I told him I wanted to see the world-renowned expert in CLL who was about a mile away he said he’d never heard of him.

So, as much as I didn’t want to, I fired him too. It’s a shame. I liked him, more or less; at least as much as you can like someone who prods you in ways you don’t want to be prodded, and pokes you in places you definitely don’t want to be poked. Now I have to start all over and build that same sort of “rapport” with someone else who is in my oncologist’s health group.

It’s one of the many flaws of our healthcare system that you need to cluster all your healthcare in one medical group, or your insurance will find a way to pay less than they are actually obligated to pay.