LR1234 wrote:Patient, So they turned you down for the trials because you don't have enhancement but will they let you have it off label without enhancement? (I don't have enhancement either)
My post was a little confusing. Back in Sept. of last year, was when I first contacted Hopkins to get some information about Revimmune. At that time, they were only doing it off-label. I was told at that time I probably wouldn't be a candidate, since my MRI didn't show enhancement (my guess is that they want evidence that the disease still has an inflammatory component). The other thing I was told is that this is a pretty major procedure - full blown chemotherapy.
A few months back (I can't remember exactly when), I emailed the person at Hopkins, for some information gathering, not all related to HiCy. Out of curiosity, I asked again about potential HiCy trials. I was told they hoped to start something late this summer, but it looks like that plan has changed. I never actually applied for the trial.
I think the best thing might be to contact Hopkins. Their requirements for offering the treatment may have changed. If you want, I can PM you with contact info.