Numberz

I thought I'd share a few plots I've generated of my various blood counts. First, the white blood cell (WBC) count data. As you can see, the WBC was below the low end of normal prior to chemotherapy and is currently holding at ~1000 cells/uL. I've got a long way to go to get back to normal (the red line).








Next, the RBC counts. My red cells are also below the low end of normal but seem to be holding out. Based on the current trend in the curve, it looks like they may start to come back up soon.

Now for the some good news. My platelets are back on the rise, and they're the harbingers of recovery so this is a good sign.

But of course, the neutrophils have to put a damper on everything. Still, the rate at which they're declining is decelerating, so we should see a U-turn soon.

Lastly, the lymphocyte count is 30% of the low end of normal. Most of what's left (95%) are T-cells (that's what the report said). NK cells make up 4.5% and B-cells make up only 0.5% of the remaining lymphocytes. That's fine with me. It's a B-cell that mutated into a hairy cell and got me in this mess, so I'm not such a big fan of them anyway.

The Light at the End of the Tunnel

Even though my neutrophils are pretty low (660), I decided to go on a bike ride this past weekend up to the Paw Paw Tunnel in West Virginia. I planned the trip about a week ago, after talking to a Park Ranger at the Lock 8 gatehouse on the C&O canal. Initially, I only planned on doing 6 miles because I didn't want to push too hard, but once I got going I didn't want to stop. I ended up riding 15 miles and loved every minute of it. There's a beautiful view of the Potomac River, and the entire path is shaded by towering trees.

The solitude and grinding of the greystone beneath the bike tires takes your mind to another time. With the faint smell of decaying leaves and campfires in the breeze, thoughts about the legend of Sleepy Hollow entered my mind. I was racing away from some unseen adversary. I found the tunnel website about a day before the trip and that's when the metaphoric irony of where I was going hit me. The description mentioned the "light at the other end", and I knew I had to go.

The drive up was beautiful. The sky cleared about half-an-hour before I got there, then I toured the tunnel and boardwalk for about 45 minutes on foot before riding. The weather held out, although I had to race some storm clouds, and a train on the other side of the river, on the way back. The train won, but I beat the clouds. If you decide to go, make sure you take a flashlight or preferably a headlamp if you're riding.

Enough self-indulgence for one day. Now for my latest medical status. I received the results of last week's FACS (2 months post-chemo). The number of hairy cells in my blood is still going down, but slowly. The green 'FACS' curve below shows the numeric density of my hairy cells (cells per micro-liter) and is the most important factor as far as I'm concerned. The red curve shows the percent of mononuclear blood cells which are hairy cells, which is essentially meaningless unless you know the WBC count. The x-axis values are days since start of chemo.

My HCL FACS Data

The 'FACS' curve shows that the numeric density of hairy cells has decreased 65% over the past month (days 28 to 56) and 98.1% since the peak value 2 days before chemo started. I was hoping the number of cells would be even less and only detectable via PCR, but as long as the numbers keep going down, I'm happy.

Side Note: A two-year Phase III clinical trial using Cladribine (the chemo drug for HCL) to treat Multiple Sclerosis (MS) is showing lots of promise for effectively controlling the relapsing-remitting form of the disease. The approach uses a pill form of the drug. I believe the underlying theory is that MS (and most auto-immune diseases) are caused by overactive B-cell lymphocytes, which Cladribine kills very well. A fairly innocuous chemotherapy (with respect to physical effects like vomiting and hair loss) in pill form can effectively reduce the severity and relapse rate of the disease. This will provide relief to many MS patients since current treatments require injections with drugs that are difficult to tolerate.

I go in this Thursday for another CBC. As always, I'll keep you posted.

Counting Backwards

Just got my latest CBC results. Not very encouraging...

Neutrophils fell from 880 down to 660 (good is 2000)
Lymphocytes fell from 450 to 380 (good is 1500)
RBC fell from 3.85 to 3.73 (good is 5)
WBC fell from 1.38 to 1.1 (good is 6.0)

Platelets went up from 87 to 97. (good is 160)

Count wise, everything else stayed about the same.

My cholesterol was better:
HDL is up to 30 from a low of 18 (that's better)
LDL is down to 31 (anything less than 100 is good)
Total cholesterol is 88 (less than 200 is good, but very low is a disease marker)
and triglycerides are at 133 (normal)

The original protocol plan was to have another CBC 4 weeks from now, but given my slow and backward progress, we're having another one done next week.

Pushing rocks is exhausting, and I'm not getting that golden tan that they promised either.

The HCL Rap...

If only I could get Andy Samberg to produce this...

(Reads like an SNL Short Rap)

Hairy Cell Leukemia
ain't got nothin on me (echo Denzel audio clip from training day)

Killin' you with Cladribine (picture of chemo treatment and 2-CdA)
just wait and see

You're crowdin out my marrow
but that's okay,
'cuz In the end you're gonna die
I got Dr. K (show picture of Dr. K)

Givin' you a left hook (Shot of Rocky hitting Drago)
with Rituximab
I'm takin' you out...
You ain't so bad! (clip of Rocky yellin' 'You ain't so bad' at Clubber Lang)

They're taking blood
week after week
and vial after vial

I can't believe I got you,
but I'm not in denial

Don't try to run
'cuz I'm gonna cream ya

for causin' marker diseases
like hypocholesterolemia

Bone Marrow Biopsy? (show a clip of a biopsy)
I say "Bring it On" (echo clip of Bush saying 'Bring it on')

I'll take you on and kill you
it won't be long

Monitorin what's left
with flow cytometry (show a machine in action and Bruce Willis sayin 'Just the Fax, Maam')

When I'm killin you
I know it
'cuz it gives me green pee (picture? nah, better not)

Don't try to hide,
I'll find you
with PCR

when you're one in a million,
I'll still know where you are

Think that you're the chronic?
Well, don't even try it

Gonna eliminate you
like I did Gluten from my diet

Got a beautiful wife (picture of Christi)
and a baby-doll girl (picture of Claire)

Gotta live til I'm 70 (morph me from now til then)
so I can show her the world

I'm pushing the rock
and It's gonna move

H-(pause)-C-(pause)-L?
Well I got somethin to prove

10 years ain't enough
25? I need more!

That's why I'm in this trial
to find a cure, cure, cure, cure ...

Pushing the Rock

Had my neck ultrasound and CBC today. Zed (the mass in the neck) is dead. The radiologist believes Zed was just an artifact of blood flowing through the jugular bulb at the valve in the vein. That's good.

My blood counts seem to be settling back to their pre-chemo levels. The platelets fell all the way back to 87 -- down from 136 2 weeks ago. That's bad. Fortunately, my neutrophils have climbed higher, but only up to 880 (up from 795). They seem to be leveling out to where they would be had I not had the chemo. The reds have also inched back up, but only slightly. Apparently, I'm responding much more slowly than most, if at all. While it's true that the hairy cells in my peripheral blood have gotten knocked down quite a bit, it doesn't look like my marrow has responded very well, and that's the part that matters.

Next week will be another CBC with flow cytometry. I'm feeling down but not out. In the meantime, I'll keep pushing the rock.

What a pain in the neck this is...

Okay, it's not really a pain in the neck, it's a small mass on the left hand side of my neck about 1.4 centimeters in diameter. Dr. K found it after running CT scans of my neck and chest on 5/22 after I complained of the fevers and aches and their impact on my work. At the time, he was concerned I might have been developing pneumonia.

Hopefully, the mass is just aggregate HCL that will eventually die away as the chemo does its job (per Dr. K). I'm going to have an ultrasound done on Thursday (6/11) when I go in for my next CBC to track its size and see if it's 1) larger 2) smaller 3) unchanged.

One would assume that if it's smaller, then the HCL theory holds water; otherwise, proceed with Plan B (currently TBD).

In the immortal words of John Proctor, "More weight!" Lucky for him, he was fictional.