CLL

Cancer in the Year of COVID

~ Lee Swanson ~ 18 Comments

I don’t get out much.

I haven’t been more than walking distance away from the house in a month. And that was to see the accountant and pick up our taxes. If I had known it was our last “outing” until who-knows-when, we may have chosen something else.

We do go for a walk nearly every day, down the street and around the neighborhood. We’ve lived in the same house nearly 27 years, and yet it’s surprising what you notice in your own neighborhood when you’re not driving by. There are some hills up and down the street that we walk for cardio. Wouldn’t it be ironic if I came out of all this in better health?

Cheryl has gone grocery shopping once in this past month, with gloves and mask. Her daughter Sara delivers a few things if we run out. Otherwise, no one comes in. As Benjamin King said, there’s nowhere to go but out, and nowhere to come but back. So we stay home. This suits me, to be honest. I’m an introvert.

But today, I am venturing out. This isn’t a long drive; just three exits north on I-5. The University of California San Diego Moores Cancer Center. I have been in contact with my doctor several times. Should I keep this appointment? Yes, probably. A few days later, do you still think I should keep this appointment? Yes, the benefits outweigh the risks.

I am struck that there is no traffic. 8:30 in the morning on a Wednesday and freeway is 75 miles an hour in both directions.

I have been coming here a long time. This time, I am a bit worried about it. Scared even. The only other time I was scared to be here was January 2008, my first chemotherapy appointment. I survived that. Thrived even. I’ll survive this one. I think.

Moores is not physically connected to the hospitals. It even has its own parking structure. Even so, this time, no one could just walk in.

I was met outside the door, told to stand on the “x” and asked the screening questions. No travel, no fever, no cough, no contact with anyone who might have COVID-19. Just cancer. OK, go on in.

I make it a point to wear bright colors and try to be cheerful when I come here. Cheerful is not my natural state. I’m determined to project the image of a healthy guy while I’m here. A lot of these people are really sick. We’ve all got the Big C. The one that isn’t in the news these days.

The waiting room isn’t as busy as usual. It’s common to see couples here, or family members or caregivers. But not today. Only patients are allowed in. Every other chair is marked off so there’s anti-social distance between us all. That suits me too.

I’m here for my intravenous immunoglobulin infusion. Not a big deal. Every fourth Wednesday at 9 a.m. Without fail. When I was working, I came Saturday mornings. Now I’m retired and it’s Wednesday mornings. It’s not a coincidence that our cleaning lady comes every other Wednesday morning. She’s not coming to the house these days, but, still, here I am.

I started these eight years ago. Every four weeks. Never missed one. 13 times a year, 104 appointments, and counting. There’s no end in sight.

But this appointment is different. Everyone is wearing a mask. Everyone. The chair is wiped down and disinfected before I sit down. There are precautions everywhere you look.

Here’s the deal. My immune system sucks. Part of that is just a fact of life with chronic lymphocytic leukemia.* Part of it is the chemotherapy that I was afraid of back in 2008 raised hell with my bone marrow and even when they can’t find leukemia cells in my blood, my marrow isn’t doing its job.

Intravenous immunoglobulin (IVIG) is immunities drawn from the plasma of about a thousand blood donors. It’s intended to boost my immune system, protect me from things like pneumonia and the flu and even just a cold. And then along comes COVID-19. IVIG won’t do squat to fight that off because blood donors don’t have COVID-19 immunities to donate. Even so, this should help with other respiratory problems and a variety of diseases, should I need it. So, hook me up.

It used to be in a bag, like most IV infusions. Nowadays, it’s a glass bottle. Looks a little like something left over from an episode of M*A*S*H.

 I’ve seen the bill; these infusions cost somewhere around ten thousand dollars, each. (Don’t drop the bottle). I don’t pay anything. Let’s hear it for insurance. Let’s get it for everyone.

I’m a pro at this. I joke with the nurses that I’ve been doing this long enough they could go on a break and I would do it myself. But I’d need a third arm, at least. And, that uncanny ability to rub my arm and find a vein. I can, however, point out where to look for the best veins.

I sit down and the nurse gets started. “Ready? Little poke.” She draws a few vials of blood, starts the pump and I get out my laptop, read, do some crosswords, and, well, write this. It’s quieter here than normal. I guess that’s because everyone is here alone. Two and a half hours later, I’m done.

I’m glad to get out, get back to the car, and go straight home.

I’ll be back in four weeks. Four weeks ago, there were none of these special precautions. Just the regular precautions and I didn’t think twice about whether I should be there. Who knows what the next four weeks will bring.

I can’t imagine.

* For any other CLL nerds who might be reading this, I was diagnosed in 2007 after a physical exam. Had FCR in 2008 and got a complete response. Was enrolled in the Murano trial in late 2014. (Murano trial was Venetoclax and Rituxan. Why they named it after a Nissan SUV, I’ve no idea.) Came out of the trial MRD-Negative. It’s been just over three years with no treatment. It’s starting to show up again. My ALC is 5.5. I get IVIG because my IGA and IGM are both less than 5.

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.

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.

The Trial – But Not the One by Kafka

~ Lee Swanson ~ 18 Comments

Well, this is easy. Big deal clinical trial. Experimental drug. Forty pages of warnings and explanations, initialed and signed. Two days in the hospital. Blood tests every two hours. Vital signs, doctors going in and out.

Can’t be too careful. Put me in the hospital because there is less chance of side effects if you don’t get a good night’s sleep. Where was sleep deprivation in the consent form?

Checked in the night before and immediately got an I-V strapped to my forearm. Seven different kinds of tape, ranging from “welded to hair” to “stitched on” with a final layer of “implanted.” But that wouldn’t be a problem for two and a half days. It was the saline solution they pumped into me by the kegful that was an immediate problem. Just in case a nurse forgot to come by and wake me the moment I closed my eyes, the salt water filling my bladder would do the same thing.

The blood draws started sometime before dawn. Sometime way before dawn. At least it was another excuse for being awake.

The hospital is very pleasant, if you’re passing by. Huge atrium, wood floors, marble, fake palm trees two stories high, skylights washing the hallways in natural light.

Then you step into the room. Bathed in beige, fluorescent light washing over the crisp white sheets and paper thin blankets, with a curtain running down the middle to shield me from the angry old man in the other bed – the one by the window. Why is he angry, he’s got the window? On my side, there’s almost room for a chair at the foot of the bed.

Fortunately I wasn’t sick and as long as I was in the neighborhood in time for the blood draws no one really cared where I was the rest of the time. So Cheryl, my I-V pole and I walked the halls, sat in the pleasant parts and read.

In the morning, the study director came with The Pill. This is what I had signed up for. Small dose to begin with. Swallowed it and waited. Nothing happened. An hour, two hours, three. Nothing. All day, all night.

The next day, same thing.

The lights came on at 5:30 when the woman from the lab walked in with a cart and cheerily announced she was here to get blood. Apparently blood is at its optimum best when it’s still asleep. Another woman with another cart went to the angry old man and woke him up. That didn’t go well.

“What time is it?” “5:30.” “You’re not supposed to be here before 7:30.” “No, I have to get it now before the doctor comes.” “Well, you can’t have it.”

So she left. He’s my hero. More remarkable, she didn’t come back. Not that I blame her; who wants to deal with that? And maybe just as interesting, later in the morning he didn’t remember it at all. I’m not sure, but that may have something to do with why he was there in the first place. That, and that he’s angry. And old.

Anyway, after the wakeup call I only had to wait three hours for breakfast. So I got up, showered, got dressed and left. I would have gotten a lot farther if it hadn’t been for my friendly I-V pole. They stare at you at Starbucks if you walk in with one of those. So I just roamed the hall.

Then after breakfast they came with The Pill again. The study director and two nurses crowded in next to my bed to watch me swallow it. This one was twice as big as the first day’s. When I didn’t turn green or orange and projectile vomit, they looked at each other a little disappointed, shrugged and left. Until the next blood test. And the one after that.

And so it went. The third day they gave me The Pill, ripped the seven layers of tape from my arm and tossed me out.

I go back to the clinic almost every day, sometimes twice a day for a blood test.

It’s been a week now, the dosage has gone from 20 to 100 on its way to 400 and I don’t have as much as a hangnail. So much for side effects.

And the trial goes on, one pill a day for several more months, maybe as long as two years. Truth is, it’s not as though nothing has happened. After a week, my white blood cell count is normal.

First time in three years.

 

Cancer: The Video Game

~ Lee Swanson ~ 10 Comments

Science has always been a subject to be avoided in my life. I took just barely enough science credits in college to meet the minimum requirements, and put in the minimum effort to get through them. And that’s the last thought I gave the subject.

And then I got cancer.

Not that studying the subject on the Internet sheds much light. Most of the research is filed as papers aptly called “abstracts” and that would be fine if it weren’t so real and decidedly non-abstract to me.

And then there’s the problem that none of the abstracts or other material is written in English. Some of it is literally not written in English and the rest of it is not written in a syntax any reasonably intelligent person can understand.

So this week I’m starting a clinical trial with only the most rudimentary understanding of what the pill is that I will be taking and what good it can be expected to do. On the other hand, the 40 page single spaced consent form is pretty good at spelling out in plain English what bad things the pill might do. Fever, sweats, chills, flu-like symptoms, cough, shortness of breath, feeling very tired, vomiting, nausea, diarrhea, irregular heart beat, muscle aches, skin rashes, burning when urinating. Dogs that have taken the drug have seen their hair turn gray and their sperm count go down. Some mice have had hearing loss. And then the big one: TLS, Tumor Lysis Syndrome. This more or less means that the pill does such a good job of killing cancer cells and shrinking tumors that the kidneys can’t handle it all, making uric acid and potassium levels go up so the kidneys and heart stop working. Not to worry, they promise to watch out for signs of that.

The good news is pretty much spelled out in one sentence: Laboratory and animal studies and early clinical data have shown that the study drug kills cancer cells and causes tumors to shrink.  What more do you need to know?

But here’s what I’ve figured out more on less on my own. The pill is called ABT-199 and it apparently attacks the alphabet. They are giving it to me because I have CLL, and one of the things that keeps CLL cells alive longer than your average white cell is a protein called Bcl-2. (I thought protein came from hamburger and eggs,pacman but apparently there’s a little more to it than that). Bcl-2 seems to only attach itself to CLL cells. So, they have pretty good evidence (I hope) that ABT-199 will run around in my veins playing Pac-Man against Bcl-2 and eating it up.  That knocks the CLL cells out of the game. If it works well enough, game over, I win. If not, well, buy more tokens and play something else.

The game starts Wednesday morning. I’ll be in the hospital for two days while they give me the first two doses and then stand back to see what happens. But don’t hold your breath. It’s about a two year study. The good news, when it comes, will take a while.

(Seemingly unnecessary disclaimer: No one should base any decision on, or give any credence whatsoever to the information and opinions expressed in this column.  )

 

Time for a Decision

~ Lee Swanson ~ 11 Comments

I got a call a while back asking if I could be on a radio show to talk about living with a terminal disease. Fortunately for the radio listening public, I had another obligation and couldn’t make it.

But it’s made me think, again, about leukemia. Not that I don’t think about it every day in one way or another. But now, finally, I’ve decided I spend too much of my living moments thinking about dying. Mortality does take on a different dimension when you really realize it’s not all it’s cracked up to be. But it’s not worth fretting over.

Everyone knows, I think, that we are not getting out alive, but any time the subject comes up someone is bound to say “well who knows, I could get hit by a bus walking across the street to lunch.” Like one day their bus is going to come in.

Ever notice that it’s always a bus? No one ever speculates about getting hit by a car, perhaps because that’s more probable. And no one really expects to get hit by a bus on their way to lunch, no matter what they say. Odds are, they’re right, they’ll live to order lunch. Odds are better that a car might take them out, so let’s not talk about that.

Me, though. I look both ways and cross the street anyway, quickly. I think when you’re really resigned to it, you don’t look first. You just go to lunch. And I’ve been doing that for awhile. Figuring that it was just a matter of time before I didn’t make it to lunch. I might have been right, but now, I’ve quit planning for an early retirement.

I’ve told my doctor and his study director that I want to sign up for a clinical trial. This has been looming now for some long time. Probably not as long as it seems. But the last several appointments have all ended with the admonition to come back in three months and talk about a treatment plan. So this time, when we went for my appointment we really thought he would want to talk about a treatment plan. Instead, he hedged and said there was no rush but that things were certainly moving in that direction and we would have to think about treatment sooner rather than later.

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. My symptoms are negligible and I’m feeling good so it seems reasonable to think I can withstand whatever they throw at me.

It’s odd isn’t it, with cancer. For so many people, the cure is worse than the disease. Until it isn’t, of course. And for me, it’s not a cure. At least not as far as they know. No one has been cured yet, but that carrot keeps dangling out on the end of the needle that maybe this treatment, maybe this pill, maybe this combination of god-awful shit will be the one that actually is the silver bullet. So let’s give it a whirl.

It’s an experimental drug, of course, or it wouldn’t be a clinical trial. (We never called them clinical trials when we experimented with drugs in college, but those were simpler times). And just for good measure they’ve decided to combine it with an approved drug to see what the two of them will do together. Each of them seems to work pretty well by itself so far, so maybe if we mix them up with just a pinch of eye of newt we’ll come up with something really wickedly good.

Now, here’s the thing. If you look it up on Google, you’ll find that three people died in the early trials of this experimental drug. Seems it worked so well, so many leukemia cells were killed, lymph nodes tumors shrunk so much that it overwhelmed their systems. But they figured out how to deal with that and have solved it. So let’s not talk about that either.

For most people, and everyone since they adjusted the dosage, it’s worked and many of them have no evidence of disease at all. It’s the very definition of the adage that what doesn’t kill you makes you stronger. And since I’m pretty healthy for a sick guy, I ought to come out on top, right? Right?

It’s going to be a month or so before I start. And it’s not a sure thing that I’ll be accepted. There will be another bone marrow biopsy and a CT scan and a medical history and some other tests. I’m hoping the entrance exam has an essay question. I hate multiple choice. If I score in the upper percentiles in all those, I get to take a pill. Every day for two years or so. And once a month, for six months, I go in for an infusion for a day. Easy. Except for the side effects, most of which have been observed in dogs and mice so far. So if I start scratching behind my ear you’ll know I’m in treatment and you may not want to suggest that we go to lunch.

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.