I Get Knocked Down...

I can't seem to catch a break these days.

I truly expected that my blood counts would have stabilized last Friday, but they all came in even lower than ever before, making it one of my most disappointing check-ups since beginning treatment.  Last week, Keith and I took a couple of walks (he's my regulator- he modifies his much faster pace to match mine, and makes sure that I comply with Doctor's orders, and don't try walk up any hills or anything CRAZY like that), and I felt good.  Felt like I was beginning to recover some of my strength and shake this awful fatigue and shortness of breath that has been plaguing me for the past couple of months - until I tried taking the stairs at the Doctor's office Friday.  (Ok, maybe Keith's right.  When I'm self-monitoring, I can't be trusted.)  Three flights almost killed me.

So I guess I should have expected...I guess that I should have known what was coming.  Hemoglobin (those lovely oxygen carrying red blood cells) down to 7.5.  White blood cell count (my defense against getting sick) down to 2.7 (with absolute neutrophils - cells that protect against infection) down to 810.  Platelets (the ones that keep me from bleeding out when I cut my finger chopping up veggies) down to 39.  All very lackluster - the hemoglobin count very concerning.  So concerning, in fact, that my oncologist decided to give me a shot of Procrit.  

Procrit is a red blood cell stimulating shot.  It's one of the drugs that Lance Armstrong used illicitly to increase the oxygen in his body, and give him a little boost to pedal faster and longer.  "Procrit (epoetin alfa) is a man-made form of a protein that helps your body produce red blood cells."  Sounds good right?  Well, it would be, except for this:   "Procrit can increase your risk of life-threatening heart or circulation problems, including heart attack or stroke. This risk will increase the longer you use epoetin alfa. Procrit may also shorten remission time or survival time in some people with certain types of cancer."  So, yeah, there is that.

Side effects of the Procrit shot - which, by the way, was a stinging little mother trucker that they administered in the fat part of my arm, on Friday - was a headache that came on every time I stood up and moved around on Sunday, and a feeling like I was coming down with the flu.  Both had pretty much passed by Monday morning.  I also woke up with a petechiae rash on my hand, but that is more likely attributable to my low platelets than the procrit.  Petechiae is described as: "Bleeding under the skin that can occur from broken blood vessels that form tiny pinpoint red dots (called petechiae). " This is the third bout of petechiae that I have gotten since Easter.  So far, it has always shown up on my left hand, and has not been severe, so it wasn't exactly panic inducing.  Just another routine f'd-up side effect.  Not pretty, though.

Back to the Procrit.  Procrit has a "black box" warning, which is the strongest warning that the FDA requires for prescription drugs.  They're not sure about the long term effects of the drug, and the Procrit website even states, "Your tumor may grow faster and you may die sooner if you choose to take PROCRIT®."  Living on the fringe, eh?

As scary as that is, to be honest, no one knows the long term side effects of the TKI (tyrosine-kinase inhibitor) cancer drugs that most people with CML are currently taking.  Gleevec, the first drug approved for targeted therapy in CML was just approved back in 2001.  Sprycel (the drug that I'm currently on) wasn't approved until 2006.  So there are less than 20 years or so of research that monitor long term effects.  For all they know, everyone on a TKI could sprout wings and a tail during their 30th year of treatment.  So we are - those of us that are on these drugs so close to their inception - essentially, all guinea pigs, anyway.  Much better than the dismal 5 year survival rate of the past, so thanks to TKI's, at least I'll be alive to witness my transformation into a dragon at age 63.

Here's to hoping for a better week, with better test results on Friday.  In the meantime, know that "I get knocked down, but I get up again, you're never going to keep me down..." - Chumbawamba, "Tubthumping".