Monday, November 15, 2010

If ifs and buts were candy and nuts....

we'd all have a Merry Christmas. I'm going on record BEFORE the ifs and buts as to not be cliche' if and when we are faced with ifs and buts. You understand, I'm sure.

So for the past 8? weeks Dad has gone relatively rogue with his Sutent doseage. By relative, I mean that he didn't dream up this protocal, he's just trying a different doseage schedule. Now I will give you information you didn't even know you wanted on the titration and permutation of sunitinib malate.

The Sutent people say that you should take 50mg. daily for 4 weeks, then take 2 weeks off to clear the toxicity out of your body. Since its breakout in early 2006, there have been modifications to the dosing schedule. Huh... look at that... dosage is not spelled doseage... though it should be. Thanks, gergle.
It is very individualized treatment as far as how side effects hit you and how much Sutent holds off your nasty tumor spread. So.... Dad started on 50mg 2 weeks on, 1 week off back in August of 09. Side effects in his feet got pretty bad.

He decided to try 50mg 1 week on, 1 week off, give or take afew days, to accomodate his busy social calendar, to see if that alleviated any of his foot symptoms.

So eight weeks ago, we... and by we I mean him, but with our full support, decided to take the risk of a decrease in dosage. The risk is that the decreased dose does not hold off metastatic growth. Remember, that's the gold growth... status quo. We, and by we I mean him, but with our full support, find out IF the reduced dose was worth it, on Friday the 19th. IF he still has stability, then of course it was worth it. BUT... if he does have growth, will we say the same thing?

I say yes. It was worth it. You know the feeling that you get when you know that something might hurt? It's almost worse than the real thing... the anticipation of the hurt?? This is pure assumption on my part as to its application of Sutent feet, but... I know I'm right. :)
You're placed on this drug that puts you in anticipated pain. You can measure it by the calendar. You know it's coming. Like when you think about work on Sunday afternoon, you might as well call your weekend over.... I think that part of the pain of the sore feet is knowing that you're going to have sore feet. There's a certain level of psychological pain in enforcing your own anticipated pain, by taking that pill every evening. Psyching yourself up to tolerate the pain may be as lonely and depressing as dealing with the pain itself.

And I think there should be a better description than "sore feet." I get sore feet when I've been standing in fantastic peep-toe pumps for too long. I imagine I'd get sore feet if I ran further than from this desk chair to the refrigerator (BUT THAT WILL NEVER HAPPEN?!) These aren't sore feet. These are dysfunctional throbbing nubs on the bottom of your legs. These are I'll-sit-here-real-still-'cause-my-feet-don't-hurt-and-won't-move-because-when- I -do- they-hurt- real-bad feet.

So, Dad goes from the anticipated pain cycle to the let's see approach that most of us are still afforded. WORTH IT. He went pheasant hunting. Which is still a little strange, I think, from the man who can't look at a turkey carcass and cries when dogs die ( thenthitive thoul... we love him). I have seen him regularly over the past 8 weeks because of the integration of Razorback Football into his and Mom's Maslow's Heirarchy of Needs.

I'm the empath of the family. And I feeeeel he's a different psychological creature since the change in dosage.

Maybe it was shooting all those poor pheasants looking to get the hell out of that corn field. Maybe it's the regular visits with my precious face and witty charm over the past 8 weeks. Maybe its the new table he just got to buy Mom so everyone would have a place to sit at Thanksgiving. MAYBE IT'S BECAUSE HIS DAMN FEET DON'T HURT as much, and he doesn't have to dread them hurting, and he has some shred of percieved control in the destiny of his pain cycle...

Again. Worth it. If on Friday we see growth, I'll still say the same.

Lovey, E

Sidenote: I think we should change all medical literature to call it 'metadynamic' growth instead of 'metastatic.' Isn't the juxtoposition of static and growth in the same phrase an act of hypocricy? Not to be confused with Hippocratic? Think on it.


KORK said...

That's my daughter ! As Dr. Baltz said " a delightful combination of your mother and father"

Rachel Silvestri said...

I'd agree on the "worth it" part. I too have seen OKW for these 8 weeks and don't just sit around and ask him about his feet. I ask him about hunting (yes, weird), broken tiles, trees, ... ya know.. normal stuff. I'd be glad to keep asking about your feet Dad, but I'm sure you don't mind. I hope that made sense. My writing skills ain't as good as my sisters.