Protocol update

[ssmme]

I was considering ccvsi. I've got a request in at a vascular doctors office since I've been denied a second round of campath due to low lymphocyte counts that didn't rebound in time. After making the ccvsi call and gearing up to pursue it I got a call from my campath study neurologists office. Genzyme is making a tweak to the study protocol. Now at month 14 after the first dose if you didn't qualify at month 12 they are doing another work up on blood counts and if your counts are back up at this time you can get the second round.

That's all I know at this time. I go in May3rd to have my blood drawn and over-nighted to Genzyme. I will also go to a local lab to have my blood tested and the results will be compared. I'm not sure how quickly the 2nd round will be administered if I meet the requirements. This is all I know right now.

I'm not being an optimist or a pessimist more of a realist. Between month 12 and month 14 do you think my counts will jump from 25 to 50 when they've hovered closer to 25 since month 3?

[Lyon]

.

[ssmme]

I am interested in seeing where my counts are in comparison to when they were taken in March. I'm not making plans as if the 2nd round is a done deal. I've got commitments that are still on my calendar. I will do another round if it becomes an opportunity but I'm fine without it.

I have had very minimal disease progression if any and am seriously considering being checked out for CCSVI. I'm not considering stents or ballooning any time soon I just want to know if I have venous issues. I don't wish to jeopardize my eligibility in this study but I'm not going to mark time in limbo while my counts won't allow me to continue actively in this trial and they (Genzyme) aren't giving me any information to make me feel less than an anomaly.

[mendesnelson]

The likelihood of your counts jumping that much are minimal but possible. If and when they approve Campath late next year I fear the price of a round of treatment will jump from $5,000 to $25,000, especially since Genzyme would not be making much money on an MS treatment that only has to be used two years in a row every 4 years (and maybe even every 5-6 years). Shareholders, do the math: 2 years of Rebif = $52,000 (effective for only 2 years). 2 years of Campath = $10,000 (effective for at least 4 years).

[k6ristin]

genzyme won't know if you go get an MRV...

You'll need to have good blood counts to get any kind of surgery done.

I hope soon there will be opportunities for those with venous stenosis to see if angio helps.
I apologize if anyone's noticed that I've posted on every recent topic @ campath in the last 10 minutes, and become repetitive.

But my doc did find from Genzyme's medical monitor that if I receive angio, I will not be eligible to receive another round of campath...basically kicked out of the study. Too bad nobody's doing any angio yet.