It's fairly intense, but very worth it. Have you gone through the screening tests yet? Do you know if you're at a colonoscopy site? (Some sites are required to get videos of the colonoscopy at D0 and D28 for comparison. That's what my site did.) So, I had an EKG, CAT scan, colonoscopy, blood work, urine test... I think that's it, along with CDAI, of course.
If you are eligible, you will have 4 infusions in 2 weeks -- D0, D4, D7, D14. Most of those days you will also complete the IDBQ and do some blood work and urine sample. They premedicate with steroids and Benadryl. The infusion bag and tubing are covered in a brownish wrap so that neither you nor the nurses can see the packaging. The infusion itself is only an hour. But, the cells are stored frozen in a local blood bank. they do not call to start the defrost process until you show up at the office. So, what I found is that from the time I stepped into the infusion room until the beginning of the infusion was about 1 hr 45 min. Then the hour for the infusion and then they add an observation at the end. I believe that was 2 hours. (longer if you show reactions) The entire process was about a 5 hour event. (Thank goodness for great nurses and trial coordinators!)
I didn't feel much during the infusion itself. The first couple of times I had a warming sensation in my chest -- sort of like the contrast dye, but just in the chest. That went away by the 3rd infusion.
Other than that, they use DMSO to preserve the cells, so expect to stink of creamed corn/garlic (different opinions) for a couple days after. It doesn't last long, fortunately! I could never smell it on myself, but my daughter would plug her nose when I came near! I could taste it in my mouth though. It's emitted through the pores, mouth, urine, etc.
If you get the real cells, with what I understand, the response rate is quite high. I felt noticably better after a week or so. It was really an amazing med. I cannot wait to see what happens with it! And, I am so excited to hear another person entering the trial. Where are you located? I drove to Seattle from Portland to be a part of it!
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05
--1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone
--tried Prochymal in Phase III study (can't wait til it's approved!)
--waiting to start Tysabri
--single mom to 10-year-old girl