Sorry guys, I've moved on to CCSVI !!
I mean, that's where I've moved my proverbial eggs to.
I think campath slowed down a wicked downward spiral but there's something out here that's keeping me down. Or I mean my wbc attack ON. whatever i don't know, but campath's not enough. i have to admit my diet is crap...but beyond that i don't know what else to do to to get better.
I accepted, bought a fancy electric scooter. I go to Physical Therapy. I kept my job.. (so far)
I get my blood drawn every month, answer the electronic ITP survey, go in to the neuro office every 3 months to be poked and prodded by two different guys.
I love my neuro team and they take the best care of me!!
I think I'll take the "free" third dose, since we know it will be the low dose. i haven't had a bad year of side effects like the first year.
Just wanted to give you guys something new to read about ;)
the ccsvi threads i've been lurking on got real sad the last few days, as word spread of this new great cure, and people so desperately want to try it, i hear they can't even get calls back from the 3-4 teams doing it (So Cal, Canada, Italy, and Poland)
I joined the "club" after reading @ it, checking with my doctor, who apparently is very interested in it. so if anyone can do it, Stan Krolczyk, D.O. R.P.h. @USF can !!! (he has been known to do off label campath, and other crazy stuff, case by case )
no news is good news, but i felt like i owed the forum an update!
all the best to you guys!
Month 21-Two rounds of campath
Re: Month 21-Two rounds of campath
Nooooooooo............k6ristin wrote:Sorry guys, I've moved on to CCSVI !!
Seriously though, have your doctors suggested any reason why the Campath isn't giving you the more encouraging results others are seeing?
Well, really my results are encouraging by some standards. no real decline. some new issues popping up but they aren't debilitating so they don't "count" to anyone except me, who has to feel them!
I think most of the good stories you hear about w/ campath come with time, where hopefully years pass without any real damage, and during that time one can rebuild what's been damaged. but just getting thru day to day is still a struggle, so i'm always looking out for the latest and greatest stuff to try. CCSVI seems so simple. My first plan of action was campath, then go for stem cells. maybe i'll get all 3 ;)
I think most of the good stories you hear about w/ campath come with time, where hopefully years pass without any real damage, and during that time one can rebuild what's been damaged. but just getting thru day to day is still a struggle, so i'm always looking out for the latest and greatest stuff to try. CCSVI seems so simple. My first plan of action was campath, then go for stem cells. maybe i'll get all 3 ;)
month 22
officially dx'd a flare-up. asked if i could get campath early instead of steroids. dr agreed it would be a fantastic anti-inflammatory for me. genzyme says no, can't get it earlier...gotta wait for month 24. did learn that i did get 2 doses of campath @ each infusion (i had a feeling), versus the other arm, 1 dose, and the 3rd arm, rebif. of course we knew we got campath and not rebif but the dose was blinded. i am told the extension phase, which begins month 24 (march for me) will be the single dose. they have done away with the double dose. but we already knew that. stay tuned.
KRISTIN
by doses to you mean 12mg per dose v. the 24mg...or did you mean day's on Campath because my 1st round was for 5 day's and i am told that 2nd round will be 3 day's...almost 6mos. in with NO result....feel a lil worse not further disabled just NO ENERGY!!!!
LEETZ
LEETZ
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
24mg versus 12mg....i don't even think initially they told me the numbers, maybe in that million page consent form...and then the 6 changes they made to the consent to add things like thyroid, ITP, kidney function, etc...
i just remember it was "to compare the high dose to the low dose.... and yes, the protocol was 5 days at first and 3 days the second and i don't know yet for the extension but it will be 12 mg i guess? i don't regret it. yet.
but seriously, i'm trying for CCSVI before extension infusion, since nobody would operate on a girl with zero lymphocytes. now i have @ 16 so maybe i have a chance.....lol
there's good and bad days. and remember the original data said 36 months to see overall good results and some reversal of symptoms...stay positive and healthy, look for alternatives because campath is fantastic at wiping out the immune response, but maybe not so good at what caused that response in the first place. hence my 2nd attack. but 2 attacks in 2 years is much better than at least 4 a year for 3 years, in my experience.
i just remember it was "to compare the high dose to the low dose.... and yes, the protocol was 5 days at first and 3 days the second and i don't know yet for the extension but it will be 12 mg i guess? i don't regret it. yet.
but seriously, i'm trying for CCSVI before extension infusion, since nobody would operate on a girl with zero lymphocytes. now i have @ 16 so maybe i have a chance.....lol
there's good and bad days. and remember the original data said 36 months to see overall good results and some reversal of symptoms...stay positive and healthy, look for alternatives because campath is fantastic at wiping out the immune response, but maybe not so good at what caused that response in the first place. hence my 2nd attack. but 2 attacks in 2 years is much better than at least 4 a year for 3 years, in my experience.
k6tin
hi...thanks for the response...trust me i am all over CCSVI...do you read the forum???my MRV pics are posted there and I have been advocating for CCSVI publicity...as for Campath--i think i got the 12mg. dose--you??
LEETZ
LEETZ
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...