CLL

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).

Breakfast and Infusion

~ Lee Swanson ~ 2 Comments

Photo of PillsBreakfast and a handful of pills. How does your day start? One of the rules of the clinical trial is that I take my pills within half an hour of breakfast. And I have to keep a journal of that.

It’s a funny little journal. They want to know what time I took the pills, and what time I finished breakfast, in that order. The last event first and the first event last. There’s also a column that asks if I ate all of my breakfast, and if not what percentage of it I did eat.

Now, sometimes breakfast is a muffin and a cup of coffee. Sometimes cereal and coffee. Occasionally an omelet and coffee. It doesn’t seem to matter to anyone how big the breakfast is, just how much of it I eat. No one explains why. No one seems to know. For those who are curious, I always eat it all. Because, you know, starving children in Africa…

This day my first stop is the clinic. Infusion day. I always call it a clinic because infusion center sounds so cancerous and La-z-Boy gallery so unprofessional. But it does rather resemble that. A room full of recliners, separated by curtains. But let’s back up. To get the full flavor of the experience we have to start in the lobby.

Someone decided it would be a good idea to get a bunch of modular chairs and couches arranged in U shapes so people could be comfortable while they wait to check in. From that you might get the idea that the check-in process can take a while. You would be right.

The furniture, however, is anything but comfortable. Like all the furniture in the entire building, it is vinyl. If you wondered what had become of Naugahyde, wonder no more. It’s all here. It’s boxy and upright with chrome legs. Mounted on top of the couches is a frosted Plexiglas plate to separate your U-shaped couches from the ones behind you. Who designs this stuff? It’s part conversation nook and part cubicle. And they’re kind of scattered around the lobby in front of the check-in desk.

Okay, so settle in and wait to check-in. Except for the sign that says “please form a line here and wait to be called.” They went to the trouble to buy insanely ugly furniture and then tell you to stand in line. So you can scatter around and sit, but then you don’t know when it’s your turn. Or you can stand. Let’s just say it wasn’t thought out very well. They ought to make us take a number, but then they’d have to admit the whole check-in process is broken.

Eventually I get my paperwork and go to the next lobby. And when my name is called in there I finally get into the clinic/infusion center/la-z-boy gallery. Usually it’s now somewhere between thirty minutes and an hour after the time of my appointment.

They take vital signs, look for a vein, start an i-v and call the pharmacy. It apparently comes as a big surprise to the pharmacy that anyone is there, as it takes another half hour for the drugs to finally arrive.

By now I’ve finished two or three days worth of Times crosswords and if I didn’t bring my laptop, I have to watch TV. It’s a ten inch screen attached to an arm on the wall. I pull it out and hope it works. It gets about fifteen or twenty channels, and often pushing the button to change channels will adjust the volume. To be consistent, adjusting the volume often changes channels. And like all TVs, there’s nothing to watch. Unlike all TVs made in this century, it has tubes.

I’m not complaining, even though I am. It’s better that they spend money on test tubes and Petri dishes and researchers than flat screen televisions and designer furniture. It’s just curious that it can be so cutting edge and so antiquated all at the same time. And the truth is, I love the place. I actually look forward to going there. It’s less than perfect but they’re doing some cool things in there.

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.

Trick or Treatment

~ Lee Swanson ~ 9 Comments

Maybe if I write this down I can get it off my mind for a while.

One of the peculiar things about CLL – which is what people call Chronic Lymphocytic Leukemia if they can’t spell lymphocytic – is that you can be in Stage 4 and not get all exercised about the need to start treatment.

Because it’s not a curable disease the treatment just reduces the symptoms. And since I don’t have many symptoms, there’s no rush. After looking at the bone marrow biopsy, my doctor declared I’m fairly healthy for a guy with stage four cancer.

That’s a bit like saying Russell Crowe sings okay for an actor. Except he doesn’t. Even for an actor. So just forget this whole paragraph. I just wanted to throw it in.

We walked into my last appointment expecting to hear that I had to start treatment right away and then trying to choose among the various tried and true treatments and the clinical trial protocols that are out there. I don’t mind saying I was pretty depressed about it. It had been five years since we last went through this. And even though it wasn’t hard to do and I had no evil side effects and didn’t even lose the hair in my ears, I was not looking forward to doing it again. Who wants to hang out every few days with folks in recliner chairs, wrapped in blankets and tubes in their arms?  No one wants to be reminded that they have an incurable disease. Not that I need any reminding. I get up every day and look at the fat guy in the mirror and tell him he has cancer.

And then my doctor said it. He didn’t think we had to take an aggressive stance. My marrow is doing okay, as marrow goes, and we can wait awhile. We walked out feeling pretty good.  Relieved. Until the second thoughts started setting in. Maybe I should be treating this stuff. Maybe I shouldn’t wait. Maybe it will be better to get started and get it over with. After all it’s stage four.

So there we are. There’s no reason to treat it right now. But there’s no reason not to.

I did what you would do in this situation. Made a list.

Reason to Wait Reason Not to Wait
He said so, and he’s one of the world’s leading experts in this stuff, and what do I know. Stage four.
Maybe if I’m a good boy my platelet count will go up a bit and I’ll be better able to tolerate it when I do go into treatment. That’s stupid. Try wishing upon a star too. 
There are some new drugs and new trials coming around and maybe they will be the magic bullet See both reasons above.
I don’t wanna. I don’t wanna.

And that’s where I’m at.  Or, so as not to end a sentence in a preposition, that’s where at I am.

First, I’ve got great faith in my doctor. He is the top of the line in CLL treatment and research. Tell another CLL patient anywhere in the world that you see Tom Kipps and they will ask if they can just stand in your presence for a while and breathe the same air.

And it’s true there is some stuff going on right now that seems exciting, if this is the sort of thing that excites you. Not that it’s a cure, but that it might put off another round of treatment for a fairly long time.

It’s not necessarily fun stuff. A drug that has finished clinical trial and has been flagged by the FDA for fast-track approval should be available early next year. It’s called Ibrutinib, apparently because all the decent names for drugs were already taken.

So that’s a possibility.  It will be a legal drug and as Nancy Reagan taught us, legal drugs are so much better than those naughty illegal drugs.

(Stock tip: Google Ibrutinib and most of the first page of results is about the money the company will make. So that should make me feel good about it.  I mean, has Jim Cramer ever been wrong?)

It does have some side effects and it’s brand new – you might even say it’s newer than brand new – so who knows what it means in the long-term or how long the long-term will be.

Then there’s another drug that my doctor is high on – figuratively speaking. Maybe I should say “he’s enthused about”. It’s called ABT-199, further proving that all the good drug names have been taken. It is doing really, really well in trials, except for the handful of patients who died. I guess it is the real life example of the adage that “what doesn’t kill you makes you stronger.”

They’re pretty sure they’ve got that part under control, because dying is not really the goal and besides, it is really bad PR to have patients die on you.

So that’s the long version. The next appointment is in January and I’ll be ready for treatment then, whether he is or not. It’s just too much psychic energy to have to think about it all the time.

One

~ Lee Swanson ~ 1 Comment

I’m one of the lucky ones. I’m not sick and I’m not in pain. Many people with incurable cancer can’t say that. But there’s something else. I’m not dying either. Not any faster than anyone else on the planet anyway. I’m going to beat this stuff.

That’s not just bravado. It’s fact. The chemotherapy is working.

Not that I don’t have my moments. The specter of my brother hangs over me. I push it away. We’re different. We’ve always been different, and my disease is not like his. Not at all.

Not that much anyway.

Just before Thanksgiving 2006 he called from Minnesota. I suspected something when I heard his voice. It was past my birthday and too early for Christmas. After the hellos and how’s-the-weathers, he told me he had an inoperable brain tumor.

Just like that. Matter-of-fact.

He then went through the whole story of how he had fallen asleep watching a football game and awoke curled up in a ball on the couch with a throbbing headache. When it didn’t go away in a day he went to a doctor who sent him to a physical therapist. She heard his story and referred him instead to another doctor. By now his eyesight had deteriorated to the point where he could only make out colors and shapes, so this doctor referred him to a specialist who finally ordered an MRI and made a diagnosis. Stage four glioblastoma, the 800-pound gorilla of brain tumors.

It’s the sort of story that’s all too familiar to people with health problems. Shuttle from doctor to doctor until someone finally takes the time to not only “see” you, but look at you.

I took in the news in much the way he delivered it; straightforward, unflinching until after I hung up. It was almost impossible to believe. We don’t have cancer. We are heart disease people. Dad’s second heart attack killed him on the golf course when he was 58. Mom was 89 when congestive heart failure finally stole her last breath. Dad left us his cholesterol in his will.

“How scared are you,” I asked my brother.

“Not scared,” he said. “Got a lot of thoughts and emotions, but that’s not one of them.”

“You know,” he said, “you sometimes see other people and think ‘what would I do in that situation’ and you imagine all sorts of things you might think about. And you wonder why they hadn’t considered this or that. Well, the thing is, you do consider all that, and more. Everything you think you would think about – you do. And the stuff you said you’d be smart enough or brave enough to do—when it comes down to it, you’re not. At least I’m not.”

He didn’t elaborate, and I didn’t ask. I figured I knew what he meant and didn’t really want to go there either. You go through the system, through the treatments, even if it’s only going through the motions. It might not be the brave thing, but it seems like the right thing.

His daughter was getting married in early January and we had the “save the date” card and the invitation. But I had just started a new job and was prepared to use my lack of vacation time as our excuse. I had grown up there. I knew better. I wouldn’t go to Minnesota in January for my wedding.

I hung up the phone and booked the flights.

Fortunately for my brother, they lived near the Mayo Clinic in Rochester and he got in to see the head of neurosurgery. The team of doctors treating him gave him confidence. They were all devoted to being positive and aggressive. Radiation and chemotherapy could shrink it they said, and reduce its effects; hold it at bay. Eventually, they told him he had six months to a year to live. Through it all, I only heard a catch in his voice twice. The first was when he told me this was probably going to be his last Christmas.

I went with him for his radiation treatments while we were there. He held my elbow and we walked down a long hallway to the assigned room: a large, high-ceilinged, dimly lit room with a single narrow, upholstered bed in the center. They put a mask over his face, a mold of his head with a couple of X’s on it to show them where to aim the radiation.

I paced the hallway until he finally came to the door again, took my elbow and we made our way to the car and back to their house.

The wedding was appropriately lovely. I got a picture of my brother walking down the aisle with his daughter while he and all the rest of us choked back tears. And at the reception I insisted on a picture of the two of us, telling him we hadn’t both been that well-dressed at the same time since his wedding, or maybe mine. I imagine he knew why I wanted the picture, but we smiled anyway.

When we left he and I hugged him for a long time and I told him I would be back in the spring “when it warmed up.” I held off sobbing until we were in the car.

I never saw him again.

Four days after we got home in January, I went in for my long scheduled annual physical and then it was my turn to call him. “You know how competitive I am,” I said. “Well, my blood test came back forty percent caffeine, thirty percent alcohol and thirty percent leukemia. You’re probably still going to win, but at least I’m in the game.”

That was the second time his voice caught.

My only brother died three months later, and now I’m going through the system.