leukemia

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.

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.

Step One, All Over Again

~ Lee Swanson ~ 5 Comments

I would say it started all over again this week, but the truth is it never ended. This was just the next step.

My appointment was at 11, vital signs, consent forms and a lot of waiting. Then a little exam room, the familiar upholstered table with a paper sheet.  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.

Then a band aid and I walk out to the car and drive home.

I’ve had five or six bone marrow biopsies since I was diagnosed with chronic lymphocytic leukemia six years ago. You would think by now they could just go in the same hole, but I guess it heals shut.  Usually my doctor orders a biopsy because he “wants to see what’s going on in the marrow,” whatever that means. This one is a little different. This is a precursor to starting treatment.

If you’ve been reading this blog for the last five years or so, you are a) my wife, or b) tired of hearing the whole story all over again. And there’s a lot of that going around. I’m tired of it too.

I’m in stage four now.

So the next step will be to get the results and then talk about the options. We did this five years ago and he recommended a trial of a chemo combination. It kicked the leukemia back but also left me without a lot of good white cells or platelets. And they never have really come back to normal.

And finally he’ll say he’s especially partial to this clinical trial or that. Because the truth is I’m part patient and part subject and while I’m pretty sure he is choosing the thing that’s best for me, there’s a part of me that thinks he just wants to see what will happen with the newest concoction.

That’s when they drag out the paperwork. There’s a chance of complications ranging from hangnails to death. And since it’s a clinical trial I have to agree to come by the clinic once a week for a blood test.

My preference is to put it off until the first of the year. No one wants to hang an intravenous bag on their Christmas tree. I don’t know what it will be and I don’t know how. But I do know why. Because my doctor says I should. I feel fine, and always have. But somewhere around 40 percent of the white cells running through my veins are leukemia cells. And nobody wants that.

Treatment

~ Lee Swanson ~ 3 Comments

I woke up this morning pain free for the first time in about a month.  My ears were ringing from the ibuprofen and there was a dull ache behind my left eye from the scotch that washed the ibuprofen down.  But the back pain that had kept me awake the last two nights was gone.  And more than that, my swollen hands and wrists were close to normal size and able to open wide and close tight.

Maybe I’d turned the corner.

It was a far cry from just two days ago when the cry was of pain and misery and just plain sorrow.  Sitting in a recliner at the infusion center in the hospital, still wrapped in blankets though the uncontrollable chills had passed, an IV attached to the back of my hand, I was not a happy camper.   “He seems a bit depressed.”

Depressed?  Me?  Why would I be depressed?  I have incurable leukemia, am four years out from chemotherapy for a disease with a five year survival rate of seventy percent.  My bone marrow never really recovered from the chemo and my immune system hovers just slightly above bubble boy.  When my granddaughter came home with an innocent little childhood virus it appears to have picked me as its next victim and threw me on my ass.

My hands swelled up like the Michelin man.  I squeezed the rings off my fingers the first night just before my knuckles disappeared.  My watch that usually hung fashionably from my wrist now clung to it like it was painted on, until I could not wear it any more.  I didn’t sleep much because every time I moved in bed my hands got in the way of something and woke me up.  Throwing the covers back to get up was painful.  My ankles and knees started to ache.  I swore that if this ever cleared up I would go back to doing crunches and exercises so I could stand up without pushing myself off the chair with my hands; hands that aren’t capable of pushing anything anymore.

I went to see my primary care doctor who mostly puzzled over it and ordered some blood tests.  He’s careful about doing much of anything for much of anything without consulting my cancer doctor because I don’t react to normal treatments in normal ways.  (The last time I took an anti-viral pill for a little canker sore on my tongue I was in the hospital with pneumonia for a week.  Seems the pill reduced my white cell count even further and in walked the pneumonia.  Who knew?)

Anyway, the blood test didn’t say anything about the swollen hands but my cancer doctor saw the numbers and called to say he wanted to do a bone marrow biopsy.  Again.  This will help my swollen hands and pain exactly how?  It won’t, but my red cell count and platelets were way down and he wanted to know why.  The Internet says that’s one thing that happens when adults get this virus from kids so it made sense to me, but he was looking for other answers.  He’s all about blood cancer.  And when you’re a hammer the whole world’s a nail.

So we do the biopsy.  Actually the nurse practitioner did the biopsy.  My part is to lie on my side with my legs curled up toward my chest.  I’m used to it, but they always seem to forget they have a hell of a time getting this done on me.  Something about a strong pelvic bone.  The first time she tried to drive the spike into my hip, it bent.  I suggested that maybe she had hit a knot but she didn’t understand.  I guess she didn’t take wood shop.

The results come back and I’m told I have red cell aplasia.  Which means something is preventing my blood from making red cells.  The treatment is intravenous immunoglobulin.  They think.  They’ve hardly ever encountered this before in a leukemia patient.  From what I hear they’re all atwitter over it.  I just want to use my hands again one day.

That gets us back to the infusion center and the IV and the blankets.  See, I got a reaction to the immunoglobulin and it gave me a headache and the worst chills you can imagine. Tears ran down my cheeks.   So here’s a fucking news flash for you—I’m depressed.

I’d be suicidal but it’s redundant.

But then I got up Friday and the swelling was gone.  Today the backache is gone.  I’m going to mow the lawn, clean the pool and after my nap, because I’m still anemic as all get out, I might hit a bucket of balls.

It’s a beautiful day. Let’s go outside and play.