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Most exciting breakthrough that you're MISSING!!

Most of you may remember my blog from last year, where I underwent a stem cell transplant. At the time the protocal was to use your own blood, to get your stem cells for later use at the end of chemo treatment. This would grow a new immune system without the active crohns memory B cells that were once there. Remission rates were 91% within the first year. No matter how severe your condition was or no matter how many drugs had stopped working, the likely hood of saving you was 91%. However what they found was by using your own blood, they are not able to kill off the last crohns cells and last b lymphacytes. So the crohns eventually comes back. This has pushed the stem cell transplants into the next and most likely last phase. Using donor stem cells! This way all the crohns memory B cell lymphacites can be killed, basically taking the genetic disposition completely out of the picture!! No more crohns in your genes. In 1982 there were 4 patients under going a donor stem cell transplant (yes we been doing sct's for a LONG time) for leukemia. Coincidently these patients had crohns disease. After the transplants, they noticed that their crohns disease had disapeared in all 4 patients, never to come back again, for 15.3 years (the last time they checked)!! I hope you're getting the picture here...

The very first patient in this new donor phase by doctor Burt has already had his transplant! Even better, the kid has made a blog in your forum. He underwent all his chemo therapy, and received his new stem cells this past Saturday. He told everyone here on that day. His thread has over 3 thousand views. However only a couple people commented on this special day. I don't understand. This has a high chance of being the end of crohns disease for anyone brave enough to under go it. Right now that Brave kid is putting this out there for you to see and benefit from. I wish we would all give him a bit more support considering there is only 70 ppl viewing the treatment section at any given time...

If you would like to view his thread, it is in the treatment section titled "my stem cell blog" - not to be confused by "my stem cell journey" sticky.

I am doing well for those that asked - Thank you. However I would not think twice about doing the donor transplant if my situation changed.

Effdee's donor transplant blog - http://www.crohnsforum.com/showthread.php?t=16284

Effdee's web page about the transplant - http://mypsct.blogspot.com/
 
Glad you're doing well! I read his blog and its really amazing, thanks for sharing. How would one find out if they could do sct?
 
Glad you're doing well! I read his blog and its really amazing, thanks for sharing. How would one find out if they could do sct?


Well criteria is that one must have done a biologic (remicade/humira or cimzia), anti inflammatory like asacol, be with age range 18 - 70 (i last recall). Although if anyone were interested I highly encourage you to contact
Paula at Dr. Burts office in Chicago. She would be glad to answer any question or concerns regarding treatment, and help you decide if it best fits your current condition. Her number is

312-503-1435.

Sun flower - thanks for your support! :)
Hopefully too many people are not angry for me posting this with the heading. I knew it might though irritate a few... sorry.
 

Ian

Location
London, UK
I would have NO concerns about doing this, but unfortunately I'm from the UK. There is a trial going on here but I don't think it's been as successful; they're not using stem cell doners and they're making half of the participants wait a year before receiving the harvested stem cells, to see if it makes a difference. It DOES make a difference - people get sick again before they get the transplant :(
Besides, my doctors did actually look into it for me and I wasn't eligible.

Really glad to hear they're making strides elsewhere though. I hope this can be more widely available in the not too distant future.
 
I would have NO concerns about doing this, but unfortunately I'm from the UK. There is a trial going on here but I don't think it's been as successful; they're not using stem cell doners and they're making half of the participants wait a year before receiving the harvested stem cells, to see if it makes a difference. It DOES make a difference - people get sick again before they get the transplant :(
Besides, my doctors did actually look into it for me and I wasn't eligible.

Really glad to hear they're making strides elsewhere though. I hope this can be more widely available in the not too distant future.
So sorry to hear you didn't qualify. Unfortunaly the UK is about 2 years behind the USA. We have already found that waiting between the two phases is NOT bennificial, in the autogulous(transplant from your own stem cells) transplant. We don't even do the autogulous anymore. It is now all Donor, which has proven to be extremely successful seen in older literature. 15.3 year follow ups of crohns disease free patients. I was so frustrated when i first read they are making people wait in the UK up to a year betwen the two phases. I don't undertand why Dr. Hawkey doesn't contact Dr. Burt in the US... My only worry is that we don't know how long that laps in time will be from when the trials stop to when they go mainstream. There is almost no profit margin to be made, so who is gonna push it foward once trials are done...? Thats my biggest concern.
 

Ian

Location
London, UK
Yeah I have no small bowel involvement and my CRP was normal even though I was in a severe flare, so I wasn't a worthy patient. In fact my dx seems to be indeterminate again and if it proved to be UC I wouldn't be eligible AT ALL as far as I'm aware, as the trials are only for Crohns I think.

Exactly, once you're 'cured' (if that proves to be the case), you're med free. Who wants that, right? Lol. Glad to hear you're doing well anyway :) I haven't read much about the recent member's experience, but I think I read your entire thread - with great interest! Hope it lasts forever!
 
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