Sunday, February 21, 2010

Just how long....?

...Can a person taking Fingolimod expect to be in remission?

I think about this question A LOT lately. This has been the longest period of remission in my MS *career* (it's kind of like a job since dealing with it every day sucks), and I can't help but wonder when it's going to end.

Yesterday marked the 2 year, 6 month mark since starting the trial, and the 2 year, 10 month, 16 day mark since the start of my last MS attack. To me, that is insanely fantastic. I still can't get over it and (other than the part about being broke and knowing it's NOT true), I often feel like I have won the lottery or something. Well, I am winning the MS lottery I guess.

If I were a character in some video game and the cruel kid playing forced me to choose between the More Health potion jar, or to go around finding bags of gold coins, I'm taking the health every time. It's only logical that running around gathering bags of gold coins all willy nilly without regard to your Health-o-meter getting low and turning red will only result in a premature Game Over message...

Fingolimod has restored my Health Meter back into the green zone and I just don't know when the MS monster is going to poke it's head back up in this game and bite me on the butt, sending my health meter into a downward spiral.

I read somewhere on the internet (so it must be true, right?) that FTY-720 has residual effects. Some lab rats somewhere (the furry version, not two legged) were followed after being given the drug to see how long the stuff stayed in their system and had a beneficial effect. If I recall correctly, (and don't hold me to this because I can't recall correctly why I went into the kitchen and stood in front of the pantry a few minutes ago), it seemed the length of time it had a beneficial effect depended on the length of time one was on the stuff.

It would really be cool if you could spend 3 years taking it for 6 years of coverage. Maybe this trial will drag out for 10 years (please oh please) and, when the magic Fingo carpet gets yanked out from under me, I could have 10 years of residual protection.

That's probably too much to ask. It's probably more like a guy taking off a condom and saying "the residual effects of having warn it will guarantee that you are safe from STDs and becoming pregnant, I swear!". Guys. They'll say anything won't they? (JUST kidding, okay? You men out there don't need to send me snarky comments because I made this drivel up.)

Back on topic... It used to be that, way back at the start of this trial, if I so much as sneezed I would cringe and duck and wait for the wrecking ball with the big "MS" logo on the side to smash me where I stood. I used to have pretty ferocious attacks which were precipitated by nothing more than a head cold or stressing about money. It was only natural, when I experienced these triggers, that I would brace myself for the wallop of a big old relapse.

I think it was somewhere around the beginning of the second year into the trial that I got a cold for a couple of days and realized it came and went and I didn't even worry about an MS attack.

By God, this stuff has more power than I thought! It has the power not only to leap tall buildings in a single bound, but, more importantly, to force me to feel normal again.

The average person, health meter intact and never drained by a chronic disease, cannot realize what a precious gift they possess. They run around with a green, sparkly health meter over their heads never even aware they could ever turn to yellow or red. To have "normal" health is taken for granted.

To have something like Fingolimod put this green, shiny almost-as-good-as-new health meter over my head and allow me to run around (literally!) in this big video game that is my life, to me is just incredible.

Maybe it's got something to do with the other lifestyle changes I made at around the same time as starting the study (i.e. quitting smoking) and the fingo's got nothing to do with it? Who knows. Maybe the simple act of laying down the coffin nails and not cramming something lit on fire into my mouth so I could suck the soot and ashes of it into my lungs was enough to make the MS monster say "Ahhhhhhh!" and go back into his cave and hibernate. Maybe.

But I'm not willing to give up that little pill in order to find out.

I never thought when I got into this trial that I would become so affectionately and emotionally attached to an ugly Chinese fungus, but I have. The day this all ends will be a sad one indeed.

So I'm wondering... don't they need to do a reeeeeeaaaaaaaalllllly long term extension study (say, hmmmmm, til I die maybe? <--omg I HOPE that's going to be a really long time (frantically seeking wood on which to knock!)) to see how long this stuff can keep a person in remission? Come on! Nearly 3 years with no relapse? That's gotta be some sort of record. Well, for me at least I KNOW it is. The longest I went before that was the first 38 years I lived, but that doesn't count because it was pre-diagnosis.

I propose a study called "JERI" or Just Exactly how much time Remains In which patients from the phase III trial can go between relapses? (See, Novartis, you aren't the only one who can come up with those catchy trial names! I figured out how you do it and before that I thought it was cheating to use letters out of the middle of a word for your acronym).

Anyhoo, what better person to have in this extended, last until she's dead, Phase Infinity trial than the person's whose name matches the acronym? Eh, see? Great idea, no?

In case that idea never makes it to the board room, my only other option is to hope the FDA takes their sweet time. I can't bring myself to wish that selfish wish, though, because there are TOO MANY MSers out there waiting to quit jabbing sharp metal objects into their bodies repeatedly.

Ya'll are just going to love this therapy. You pop the teensy tiny capsule, way smaller than a vitamin, and take a sip of water. The capsule floats in your mouth and when you swallow you have to check around with your tongue to make sure it's gone. You never felt it go down.

It just doesn't get any better than that.

I'm praying I can go forever without another relapse on this stuff.

That said, watch. I'll be crawling back to this computer chair tomorrow to try and bang out H-E-L-P M-E-! on the blog.

Cringing and ducking, I'm outta here... to go have a NORMAL, BORING DAY. YAY! I've won the Lottery.

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