My Last First Dose of a Chemo Drug?

This weekend, I headed up north with some lingering steroid withdrawal. As it turns out, walking the beach watching storm clouds role over the Porcupine Mountains, listening to some Bruce Springstein, reading some John Steinbeck, and bouncing around in our old tub fishing on Lake Superior, all proved to have a curative property well beyond any medication I could have taken for steroid withdrawal.

I even got bit by a tick (no big worries it was a bear tick -- not the Lymes-carrying deer tick). I derived a strange if a bit sadistic pleasure knowing that the blood-sucker's last meal was laden with chemo-- that parasite picked the wrong host.

It was an all-around terrific weekend of recovery. No fish, but also no complaints.

Yesterday found me back in the clinic to see if my blood counts were high enough to proceed to the second half of delayed intensification (rough chemo round #4 of 6).

Technically in order to proceed onto the second half of this cycle, we were supposed to wait until my neutrophil (bacteria fighting white blood cells) count was 750 and my platelet count was at or above 75.

The platelets did their duty (112), but the sluggish neutrophils were just below 500.

Both my Doc and I were anxious to stick a needle in my back and keep plugging away, and luckily my study coordinator found a footnote in the back of the protocol that says there's no need to wait to continue because of immune suppression alone -- As long as I'm healthy and there's no active infection, I could continue.

Because I feel healthy as a horse -- This statement might be a bit hyperbolic considering the steroids left me soft and my legs so weak I couldn't run 4 strides if a hungry, ornery grizzly bear were nipping at my heels -- so, let me restart:

Because I feel healthy as a horse considering I've been through 7 months of chemo, we decided to proceed.

I like this. To use a favorite if overused cliche, it fits my general "go big or go home," philosophy of life and keeps us moving forward instead of waiting -- I hate waiting.

This is going to be another really rough stretch, but because we started yesterday, if we stay on schedule, I should be feeling really well again by the end of July and have a great deal of the summer left to enjoy -- and fish.

So yesterday was another spinal tap with chemo (methotrexate on the mind today) and a big 'ole bag of cytoxin -- one of the more notoriously rough chemo drugs. Last night and for the next three I'll be injecting myself with my old friend cytarabine -- my least favorite chemo drug, and last night I took my first dose of another oral chemo drug Thioguanine.

If all goes well, and this protocol kicks the hell out of the leukemia such that it never comes back, last night's dose of Thioguanine was a real landmark -- my last first dose of a new chemo drug.

In celebration of this event, I thought it fitting to put together a "Sam's reference guide to chemo drugs and their side effects." Being on so many drugs, it's often difficult to figure out which side effects belong to which drugs, but being at this long enough I've figured a great deal out.

Now a couple of important notes -- These are side effects i've dealt with over the course of seven months -- reading through it all at one time will make it look like the last seven months have been miserable. Truthfully, it has been miserable at times, but the vast majority of the time i've experienced a couple of side effects at a time and its been more than tolerable.

It's also important to note that everyone who goes through chemo experiences wildly different side effects; what you'll find below is not what the doctors say the side effects are, it's what I've experienced personally. Someone reading this who might also get chemo may experience very different effects.

I've said before that one of the many purposes of this blog is to record my journey openly and honestly. As humans we tend not to be honest about our experience, especially when it comes to something as intimate as our bodies. I've always tried, and will continue to try, to buck this trend. This is all a part of life. Medically squeamish beware.

I figure this list will act as a reference for me in the future as I take these drugs-- and hopefully as a reminder of rougher days gone by...

And, without further adeiu...

"Sam's No-Holds-Barred Guide to Chemo Drugs and Their Side Effects -- In Order of Drugs Recieved"

1. Cytarabine Administered to the Spinal Fluid:
Effects: Severe and Sudden onset of nausea; spinal headache.

2. Prednisone (Oral Steroid):
Effects: Irritabillity; Sleeplessness; Weakness/Muscle loss; Weight gain in cheeks, shoulders and stomach; Insatiable appetite; Severe acid reflux; Loss of inner monologue; Delusions of grandeur; severe A.D.D.

Withdrawal effects: Severe bone and joint pain; severe muscle weakness and tremors; feeling that something is lodged in lungs, esophogas and chest; extreme fear; loss of 7-10 pounds of water weight in single night; extreme depression; hallucinations at night.

3. Vincristine (IV):
Effects: Neuropathy -- numbness in my hands and feet; cramps in hands and feet; testicular pain and tenderness; temporary impotence (thank god it's temporary -- this lead to a scary couple of weeks!)

4. Daunorubicin (IV):
Effects: Gas and Bloating

5. PEG-Asparaginase (Two shots injected into glutes)
Effects: Severe Fatigue, Sleeplessness, Flu-like symptoms

6. Methotrexate administered in spinal fluid:
Effects: Severe fatigue; Occasional mild headaches; irritability; loss of sense of humor for 3-5 days; slowed cognitive ability for 2-5 days

7. Cyclophosphamide (alias: Cytoxin) (IV):
Effects: Severe fatigue; Lowered red blood counts sufficient to make me extremely anemic and require red blood transfusions; lowered platelet counts sufficient to cause nose bleeds and require platelet transfusions; severely suppressed immune system sufficient that the lab technicians could not even count my neutrophils.

8. Self-Administered Cytarabine shots:
Effects: All of the same as cytoxin + Nausea.

9. Mercaptopurine (taken orally at home):
Effects: Lowered blood counts.

10. Methotrexate (IV):
Effects: Fatigue; Diahrea at higher doses; hot flashes at higher doses; lowered blood counts at higher doses

11. Doxorubicin (IV):
Effects: Gas, Bloating and Diarea sufficient to cause rectal bleeding (this made for a fun week...)

12. Dexamethasone (Oral Steroid):
Effects: Same as prednisone only exagerated + Amnesia and memory loss.

Withdrawal Effects: Same as prednisone only to a much, much greater degree.

13. Thioguanine (Oral):
Effects: ???... I'll have to report back. I'm now two doses in and haven't felt a thing (knocking on wood)

Well, that exhausts my list of chemo drugs. While some of the side effects have been and will continue to be rough, I will try never to complain so long as they share one effect: killing the leukemia. Life is a beautiful, beautiful thing and I hope to stick around for as long as possible, and it is these miraculous drugs that give me hope.

It is my sincere hope that doctors and medicine only get better so my fellow leukemia-fighters of the future can not only all be cured but can do so without all of the side effects of the current treatment protocol.

Take care and stay cool in this crazy heat,

Sam


Shout Outs:

SO to Shelly: It was great seeing you, have fun at the Mall of America!
SO to Pete-o: Thanks for driving back to see me, it was great to BS with you and I appreciate it very much.
SO to Stuart: I'm glad you're feeling on the up and up.
SO to Dennis: Blast that mother ship.
SO to Annie: Sorry I had to break our weekend plans... We'll have to reschedule...
SO to Sally Mode: Sorry I've been slow getting a hold of you... I promise i will eventually...
SO to the Brew Crew for tonight's great game.