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Crohn's Disease Forum » Treatment » My Stem Cell Transplant Blog


 
06-01-2011, 03:03 PM   #31
SdN
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Best of luck to you effdee you're a true fighter.
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07-10-2011, 10:56 AM   #32
effdee
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Well Northwestern put my name in for the patient-first room at the Worcester House at the beginning of last week, and the room opened up on Thursday so I flew to Chicago on Friday. My pre-testing was originally scheduled for the week of July 25th, but they were able to reschedule most of it since I got here early so testing will now start tomorrow (the 11th). I'm scheduled to be admitted to the hospital for the transplant on August 16th.

I'm going to try to setup a blog for everything today and I'll post the link when I do.
07-10-2011, 11:17 AM   #33
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best of luck to you !
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07-10-2011, 01:35 PM   #34
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Effdee, I just found this thread. I hope everything goes OK today. Good Luck.
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07-11-2011, 10:06 AM   #35
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The ball is really rolling now, Awesome. Looking forward to the blog to learn about the testing, etc.

Nice that they provide access to a room. Are there any other patients Worcester House (sounds like a dorm)?

Quick question: Is the team at Northwestern mainly looking to do donated stem cells now? Or is the decision on what transplant to do case-by-case?

J
07-13-2011, 06:07 AM   #36
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Effdee, I just found this thread. I hope everything goes OK today. Good Luck.
Me too Doug!!

Please keep posting here too EffDee after you start your blog, I mean
Best of luck to you!!
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07-13-2011, 04:21 PM   #37
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Effdee, I'm looking forward to hearing how it goes and to reading your blog when it is up! Please keep us all posted, and best of luck with everything!
07-14-2011, 09:39 PM   #38
effdee
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Thanks again for all of the kind words, everyone. I finally got what I wanted to posted on my blog. I'll keep reading here so you can comment/ask questions here.

http://mypstc.blogspot.com/
07-18-2011, 09:15 PM   #39
effdee
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Hi everyone. Turns out I forgot to proof read the blog URL (stc instead of sct) so I changed it. Sorry for those who had it bookmarked!

http://mypsct.blogspot.com/
07-20-2011, 09:17 PM   #40
effdee
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Just put up a post for today.
07-21-2011, 05:02 AM   #41
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Well done Patrick! Thanks for the heads up! Good luck!
07-21-2011, 01:48 PM   #42
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Thanks for sharing! Good luck, Patrick!
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07-21-2011, 08:24 PM   #43
effdee
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Just put up a post for the dental appointment.

http://mypsct.blogspot.com/

Thanks, Mark and Jill. I appreciate all the support!
07-21-2011, 08:57 PM   #44
effdee
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Would the process of approval have been easier if it would have been your own cord blood? Do you happen to know?
I asked Dr. Burt yesterday and he said it was a good question. It didn't seem like something he considered since banking cords is so recent the only patients who would have the option would be too young for the transplant anyway.

Using your own banked cord would eliminate the body recognizing the infused stem cells as foreign, but you would run into the problems that 1 cord doesn't always yield enough stem cells for the transplant, and the stem cells would be coming from your own immune system, the predecessor of a Crohn's developing immune system. Although the stem cells would be much younger and better than an autologous transplant, it still might not be ideal in that the relapse rate might not be any better than an autologous transplant since it would still be from your immune system. It seems to be somewhat of a risk:reward situation in that donor stem cells that come from a healthy immune system would give you the best chance at the new immune system being healthier and less prone to relapse than before, but carry the small risk of graft rejection and GvHD. The impression I get from Dr. Burt is that the risks of either of those occurring, and them being severe, are really, really low, so the potential benefits with donor stem cells far outweigh the potential disadvantages.

I'm not sure how well I explained that so let me know if it I should clarify anything.
07-22-2011, 04:28 AM   #45
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Thanks for the post heads-up Patrick! Please keep doing that! Continued good luck!!
07-26-2011, 09:38 PM   #46
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Just made another post. Turns out things were going too well and I needed some excitement.

http://mypsct.blogspot.com/
07-27-2011, 05:39 AM   #47
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Do the docs think the aggravation of the scope along with the inflammation caused all that? Phew, hope you're still improving Patrick!
07-27-2011, 10:04 AM   #48
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Yeah, that's the assumption. Things would have gotten worse before they got better if something actually was perforated. The fever went away overnight so I'll have solids for lunch and be discharged this evening if that goes well.
07-27-2011, 10:18 AM   #49
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I guess I understand what the doctor is trying to say. However, why do they then treat certain chronic diseases and cancers with stem cells and cord blood successfully??
According to this explanation the cord blood and stem cells would potentially develop into the same "sick" cells and nothing is gained??
Just wondering ....
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07-27-2011, 01:17 PM   #50
effdee
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It's exactly what you said, a treatment, and not a cure, unfortunately. Stem cells are the best/most potent at repairing and healing things that have been damaged, to an extent, but once the effects of the stem cells wear off it's entirely possible to get sicker again. I'm not sure but I wouldn't think infused stem cells alone would change the makeup of the immune system. Good question.

I just got word that I'll be discharged today! I'll work on another blog post tonight or tomorrow to fill in the other details.
07-27-2011, 08:57 PM   #51
effdee
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Posted another update. That should cover everything that went on.

http://mypsct.blogspot.com/
07-28-2011, 04:51 AM   #52
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Hey Patrick, I know Dr. Burt can't talk about particular patients but do you know how many have completed sct under his trial and what his up to date success rate is?

I hope this setback is mild and temporary for you Patrick!!
07-28-2011, 07:46 PM   #53
effdee
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Good question. I asked my transplant nurse and here's what she was able to tell me.

Just one patient so far with cord blood, in 2009, who has been in remission since. No symptoms. One of their doctors wrote a paper on the case which is awaiting publication, so they can't share more about it yet.

They've done 27 autologous on study, and 5 off study. I believe off study means the protocol was altered for one reason or another so it wouldn't count as the same procedure. I'll ask for clarification and let you know.

Here's the latest for the autologous transplants:

Eighteen of 24 patients are 5 or more years after transplantation. All patients went into remission with a CDAI less than 150. The percentage of clinical relapse-free survival defined as the percent free of restarting CD medical therapy after transplantation is 91% at 1 year, 63% at 2 years, 57% at 3 years, 39% at 4 years, and 19% at 5 years. The percentage of patients in remission (CDAI < 150), steroid-free, or medication-free at any posttransplantation evaluation interval more than 5 years after transplantation has remained at or greater than 70%, 80%, and 60%, respectively.
The 5 most recent patients were off study. Not sure what they're allowed to say about them, but I'll inquire about that, as well.

For now, Dr. Burt and company believe cord blood transplants will provide the most enduring remission and that the mixed chimerism (the newly formed immune system that gets its makeup combined from your own immune system and the infused stem cells) of the cord blood will fend off any inherited Crohn's autoantibodies that could possibly surface after the transplant.

Although some patients on the autologous protocol have relapsed, it appears that they have a much better response and increased sensitivity to TNF-inhibitor medications after the transplant, whereas they were not effective or minimally effective prior to the transplant. That being said, they are working towards doing exclusively cord blood transplants for the Crohn's patients.


Things are still going better for me. I think this is the best I've felt in quite a while, despite the colonoscopy complications, thanks to the Cipro and Flagyl. Go figure!
07-29-2011, 04:42 AM   #54
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Thanks Patrick! I'm assuming you will be having cord blood tp. It's very interesting and very hopeful. Please keep posting and blogging!!
07-29-2011, 10:33 AM   #55
effdee
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Will do!

I heard back about what "off study" means. It means that the patients did not qualify to be on study, or Dr. Burt did not believe the benefit would be very significant in their cases, however the patients wanted to proceed with the treatment.

So it sounds like they have the option of still doing the transplant on patients who don't quite meet all of the eligibility criteria, as long as it wouldn't be too much of a risk. I vaguely remember hearing that they rarely do the transplants out of compassion, so that must be what they mean.
08-08-2011, 09:31 PM   #56
effdee
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Just posted another update. Still doing well. One more week!

http://mypsct.blogspot.com/
08-09-2011, 05:41 AM   #57
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Awesome Patrick! It feels a bit like you guys are pioneers blazing a trail for the future!! Hope you enjoy that last meal...out!!
08-11-2011, 09:18 PM   #58
effdee
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Another update. 2 day delay because the cord blood won't quite be ready.

http://mypsct.blogspot.com/
08-12-2011, 04:55 AM   #59
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Hope the delay doesn't cause a problem with the Cimzia effectiveness. It's getting close now though Patrick!! I know you're very excited to get on with it!!!
08-12-2011, 12:30 PM   #60
effdee
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That's the only thing I'm concerned with. I'd love to get things started, but 2 more days of vacation here isn't bad at all. The more time I spend in Chicago the more I'm liking it.
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