Rituxan

Down and Down

~ Lee Swanson ~ 7 Comments

We’re on vacation this week and we’re supposed to be in Chicago. Abbvie, the company that sponsors the clinical trial I’m in, is holding a conference and invited us to come and discuss what it’s like to have CLL. It is flattering, though there are other people in the ABT-199 trial, my name just floated to the top because someone there read this blog a few months ago. And then they asked us to come anyway. Makes you wonder a little doesn’t it.

The appointment for my last Rituxan infusion of the trial was moved up two days so we could make the trip. Abbvie got the plane tickets, the hotel reservations and the car service. I haven’t been on an airplane (or in an airplane either) in four years and I hear there have been a lot of improvements. It’s actually pleasant now I guess. Lots of legroom, food, drinks, and you don’t need correct change. Right?

So I went in to the clinic for the infusion, did my blood tests and waited an hour or so for results. That’s when the nurse came in and said my counts aren’t good enough to have the infusion.

Seems my ANC is way low. I wasn’t aware the African National Congress had any connection with leukemia, but it turns out ANC is also absolute neutrophil count. Those are the good white cells; the ones that fight infection and disease. The low end of the normal range for that ANC is 1.4. Mine was 0.2. That’s almost bubble boy. My doctor said it will only go up from here. Since the alternative would be a negative number, you don’t really need a medical degree for that conclusion, but I’m glad he said it out loud. Anyway, I couldn’t get the infusion and even had to surrender my pills. We’ll try again in a week. I got a hypodermic in the stomach, a handful of masks, a long list of things I shouldn’t do and told to go home. If I happen to come up with a fever over 100, I’m supposed to go directly to the hospital. Do not pass go.

And we had to cancel the trip. It’s everything that’s on the list – crowds, restaurant food, airplanes, mold spores. The biggest worry was the flight. We had chosen Petri Dish Airlines. It’s the very definition of an air carrier, in every sense of the word.

The good news is, we won’t be in Chicago this week where the high temperature is supposed to be 35 degrees, and the warmest thing I own is a sweater. The bad news is, we were looking forward to getting away, even in a polar vortex and the whole idea of the conference was interesting, bordering on exciting.

The good news is, last weekend (before I knew I was a 220 pound delicate little flower) I was hauling sand and cement and making a flagstone path in the back yard and today that job is far too dangerous for me. The bad news is, the path is only a third finished and is not going to finish itself.

The good news is, if I can’t build the path and do the rest of the yard work, I can still play golf. Golf’s not on the list of immune threatening activities, provided I soak my balls in Purell, and who’s ever heard of anyone dying on a golf course? The bad news is, my Dad died on a golf course, actually.

The good news is, the trial has been working spectacularly and I’m very optimistic about what we will find (or not find) next month when I have a CT scan and bone marrow biopsy. The bad news is, all this bad news is not helping my mood, particularly since my optimism quotient is naturally lower than my ANC.

You might say it is the best of times, it is the worst of times. (That just might catch on).

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.