Rochester NY stem cell study

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HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 4/3/2008 5:07 AM (GMT -7)   
Rochester NY has some great research facilities.  Unfortunately, we only have one person in the study at this time, but her results are positive.  I have met this woman at our local CCFA meetings.  She has changed dramatically.  I have hopes for this treatment and only wish I could be part of the study---fortunately I am "too healthy" and have not tried all the big meds so I don't qualify.
There was also a lcoal news piece but it was awful....it never mentioned anything but her body aches.  This woman is also VERY soft spoken so the tv bit seemed "cheesy" to me.  I am really glad the rpint article seems more detailed
 
 
 


Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


MBJOH
Regular Member


Date Joined Mar 2007
Total Posts : 257
   Posted 4/3/2008 6:52 AM (GMT -7)   
Habs - we have chatted before - I am from the Syracuse area, any idea how you inquire about getting involved? I have tried all the big meds, I am on Humira right now and feel much better but not perfect that is for sure. What are the qualifications? MB

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 4/3/2008 9:08 AM (GMT -7)   
MBJOH, the side of the article gave this information for getting involved:
 
"For information on joining the Crohn's stem-cell trial at Rochester General Hospital, call (585) 922-5465."

...rejoice in our sufferings, because we know that suffering produces perseverence; perseverence, character; and character, hope.   Romans 5:3-4


MBJOH
Regular Member


Date Joined Mar 2007
Total Posts : 257
   Posted 4/3/2008 10:38 AM (GMT -7)   
Zena - thank you. I missed that.

Reef08
Regular Member


Date Joined Dec 2005
Total Posts : 267
   Posted 4/3/2008 1:44 PM (GMT -7)   
MBJOH said...
Habs - we have chatted before - I am from the Syracuse area, any idea how you inquire about getting involved? I have tried all the big meds, I am on Humira right now and feel much better but not perfect that is for sure. What are the qualifications? MB
I believe the qualifications for Prochymal is that you have to have a high CDAI score, failed an immunosuppressant (Imuran, 6-MP, or Methoxetrate) and failed either Humira or Remicade.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 4/3/2008 2:04 PM (GMT -7)   
I am originally from a very small town 30 miles north of Syracuse. I actualy prefer SUNYHSC for anything medical they have some of the best rhuemys but I don't know if they are participating in this trial-I live in exile now down near DC.
Sj

MBJOH
Regular Member


Date Joined Mar 2007
Total Posts : 257
   Posted 4/4/2008 5:32 AM (GMT -7)   
I actually found some more information about this trial and it is kind of scary to me. It sounded like you receive chemo to basically get rid of all your existing white blood cells then they add the "good" white blood cells back to you. The chemo thing is what scares me. The chance of infection is very high I guess and you are hospitalized for quite some time. I think I will stick with the Humira and feeling about 70% well. I know Humira has it's potential side effects but so far so good for me. Thanks. MB

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/4/2008 7:19 AM (GMT -7)   
It's a bit confusing because this article does not mention the drug name, It sounds more like Prochymal than it does the trial where they harvest the patient's cells, use chemo, then re-infuse cells.

To be eligible for the Prochymal trial you need to have failed (not tolerated or allergic or non-responsive) all three: a steroid, an immune-suppressant, a biologic, and of course there are exams like EKG, CDAI score, etc.  If you're interested you can email Osiris to find out where there trial locations are. IBD@Osiris.com


--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!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


Reef08
Regular Member


Date Joined Dec 2005
Total Posts : 267
   Posted 4/4/2008 8:26 AM (GMT -7)   
The article is referring to Prochymal, so no chemo is needed.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/4/2008 9:00 AM (GMT -7)   
"Peters is the only participant in the trial so far..." They must be referring to that location. Very misleading. Several people have been enrolled in the Phase III trial. But, finally it's getting publicity! That's great!
--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!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/4/2008 3:35 PM (GMT -7)   
Some information about a new treatment was released at about the same time that Prochymal hit the news - four big doses of Cyclosporin to reboot the immune system. They either followed it with a stem cell-ish infusion, or didn't follow up with any other treatment. Apparently it's had a lot of success with MS, and they're trying it with other auto-immune illnesses.

I wonder if this is the same treatment, or ar least a revised version.

I.
Co-Moderator Crohn's Forum.

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