ABT-199

Seven Years of the Cancer

~ Lee Swanson ~ 14 Comments

Offstage announcer:

Previously On “Seven Years of the Cancer”

(Graphic: January 2007)

(Phone rings)

Voice on telephone:  “Lee we’ve got the results from your physical and we want you to come in and take the blood  test again. I’m setting up an appointment for you with a hematologist/oncologist”

Lee: “A what?”

(Cut to doctor’s office)

Doctor: “I’m the hematologist here and you have chronic lymphocytic leukemia.”

Lee: “I don’t know what that is, but you’ve made a mistake.”

Doctor: “It’s incurable, but it’s treatable, so come back in four months and we’ll do another blood test.”

Lee: “What does this mean?”

Doctor: “It means you come back in four months and we do another blood test.”

(Tight shot Lee, rolling eyes, shaking head)

(Graphic: April 2007)

(quick montage: Internet pages, conversations, Lee and Cheryl driving to cancer clinic, meeting new doctor)

(Golf course: Lee and three friends on a green)

“Look, maybe you have all the time in the world, but I have cancer. There are a few other things I’d like to do with the time I have left. Will you just putt for godsake.”

(Graphic: January 2008) (Infusion center: IV in the back of Lee’s hand, Lee and Cheryl holding hands)

(Graphic: September 2008) (Lee and Cheryl in exam room. Doctor walks in holding papers, smiling.)

“You done good..”

(Lee walking the dogs down the sidewalk)

(Graphic: February 2012)(Lee in the infusion center. Two nurses overheard talking to each other)

“He seems a bit depressed.”

(Graphic: September 2013) (Lee being led to an exam room, door closing behind him.)

Lie on my stomach and wait some more.  A lot of idle chatter about the weather and then she jams a sharpened metal drinking straw into my hipbone.  Poke in a needle and draw out some fluid, and then some kind of gizmo that reaches in and snips off some bone marrow. They tell me it’s supposed to be painful. And this time it fulfilled that promise.

(Graphic: October 2013)

After looking at the bone marrow biopsy, my doctor declared I’m fairly healthy for a guy with stage four cancer.

(Graphic: April 2014)(In exam room going over paperwork with the director of clinical studies.)

We had talked about it and had a pretty good idea of what we wanted to do. Is there any reason not to wait? Will it be any easier or more effective if I’m older and sick? If anything, it seems like the right time for it now.

(Graphic: May 2014) (Lee in hospital bed, IV in arm, taking a handful of pills.)

(Graphic: August 2014) (Exam room. Doctor sitting on stool, with papers in hand.)

“That’s really amaz.. really good.” Lee and Cheryl squeeze each other’s hands.

And now, the season finale of Seven Years of the Cancer

(Graphic: December 2014)

I finished the infusions in November and no matter what will continue to take my pills for another three months, maybe longer. So the next step in the process is to figure out how it’s working.

I’m at the hospital at 8:30 in the morning to drink a quart of iodine water so that whatever they’re looking for will show up on the CT scan. The scan doesn’t happen until 10:00 and it’s pretty uneventful. Cold room, thin warm blanket, get dressed and leave.

Breakfast wasn’t allowed before the scan and my next appointment is at 11:00 in another building so there’s no time to eat yet.

Bone marrow biopsy number I’ve-lost-count is next and again, like almost every time, they have trouble getting through my hip into the marrow. Something about strong bones. That’s good if I live long enough to fall like so many old people, because odds are I’ll do more harm to the sidewalk than my hip. But it’s not good if the objective is to get a hole in the bone and snip off some marrow.

She kept trying and it was pretty aerobic for her. Didn’t bother me though. Every couple minutes she would ask if I was having any pain until I finally said that answering her questions was the only thing keeping me awake.

Anyway I finally was able to eat and then Cheryl joined me for the doctor’s appointment and at least a partial verdict.

He had the results of the scan and except for one small lymph node under my arm, the rest were gone. Now, I wouldn’t know a lymph node if it were on the table next to me, but the fact that the scan can’t find any is a good thing. The one it did see is described as fatty tissue. Well, that’s embarrassing. But have you any idea how hard it is to get a lymph node to eat right and exercise?

So my doctor is pretty impressed with how it’s going and we won’t have another appointment for three more months. Even so, the biopsy results won’t be in for a couple weeks so all in all it’s a hung jury.

Then, in the morning of Christmas eve, I got an email. From my doctor.

“Regarding the bone marrow biopsy: the liquid aspirate showed only a tiny tiny amount of CLL: 0.01% of the cells were CLL cells. This is about as low as it gets before it’s no longer detectable. It’s possible that we will want to repeat the marrow biopsy in about 2 months to see if the 0.01% residual goes away.”

As we kind of suspected, there wasn’t enough marrow to test but the conclusions from the aspirate were conclusive enough for me. Considering I was in the mid-double figures six months ago, getting down to one one-hundredth of a percent is pretty good. And I’m still taking pills. Could root it out altogether. Have at least kicked the can down the road a good long ways.

When we opened the champagne on Christmas Eve I was toasting something in addition to friends and family.

Coming soon: Season Eight.

My Numbers Up

~ Lee Swanson ~ 9 Comments

We’ve all heard it said; there are times when you can’t explain it, there’s nothing you can do about it, when your number is up, your number is up. You accept it, if you can, and you move on as best you can.

I went back to the clinic and they showed me the results of the new blood tests. It hit me like a punch in the gut. Literally. A hypodermic shot in the stomach that stimulated my bone marrow to produce white cells. My numbers are up. My white cell numbers, my neutrophil numbers. Way up.

The neutrophil count (the number of the cells with the white hats that fight infection) which had forced me to sit wrapped in a blanket, with my nose pressed against the window watching the world go by, shunning all humanity (not unlike the way I am most of the time, come to think of it) had gone from 0.2 on Monday to 10.0 on Friday and down to 6.4 by Monday. For those few odd folks among you who weigh yourselves more often than you get blood tests, know that the normal range for ANC is 1.6 to 7.0.

My white cell count had gone from 1.4 to 18.8 to 8.6. On the off chance you haven’t memorized it, the normal range of white count is 4.0 to 10.0. So there was a day or so in there where I was bulletproof. Presuming my aura could have been transmitted, I should have seized on the moment to hold a revival meeting and slap people on the head to heal them.

In the roller coaster ride that is chronic lymphocytic leukemia, that shot is an E ticket. If it didn’t cost something between a house payment and a house, I’d keep a six pack by the bedside.

It also makes your bones ache, presumably because it’s taking a whip to your bone marrow and making it work overtime. I got that shot last Monday and by Thursday my hips and back were aching like crazy. Luckily, it only bothered me if I sat, or stood or lay down.

But it worked.

Now then, the upshot of all this math is that I am once again eligible to take the drugs in my clinical trial. Drugs that were suspended last week when my numbers were down so much my number was up. I sat through my sixth and final infusion today and went home with a month’s supply of ABT-199.

Next month, I’m back again, just to be sure I can find the place, and to have a CT scan and a bone marrow biopsy. We might have the results of those in time to hang on the tree.

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.