10-22-2011, 12:19 PM
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#2
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Senior Member
Join Date: May 2011
Location: Alabama
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I just got back last week from getting stem cell replacement. It was beyond the most amazing thing. I don't regret it one bit!!!!
__________________
Prayer isn't a "spare tire" that you use when you have a flat; it's a "steering wheel" that directs us in the right path throughout life!
Amanda
Diagnosed 1999
Current Meds:
Imuran
Questran packet
B12 inj
Bupap prn
Multivitamin
Pacemaker
Previous Meds:
Ileostomy reversal
Bowel obstruction & resection
Apriso 0.375 4 once a day
Prednisone
Flagyl
Cipro
Asacol
Pentasa
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12-03-2011, 11:39 PM
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#3
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Member
Join Date: Nov 2011
Location: Wheaton, Illinois
My Support Groups:
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Where did you get the therapy?
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03-11-2012, 01:02 AM
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#4
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Forum Monitor
Join Date: Mar 2012
Location: Greenville, South Carolina
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I am currently waiting to see if I'm a candidate for the stem cell transplant. If I am, I will let you all know how it goes. My blog is updated all the time and will tell you about my daily journey and what I'm doing to get the SCT. www.lifeofacrohnie.blogspot.com
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03-11-2012, 01:04 AM
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#5
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Forum Monitor
Join Date: Mar 2012
Location: Greenville, South Carolina
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Where did you get the therapy?
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The stem cell transplant trial is done by Dr Richard Burt at Northwestern Memorial in Chicago.
In order to be considered as a candidate, you have to have Crohn's disease for atleast 5 years, failed all other conventional treatments, and be severe enough to warrant this radical of a procedure. Go to Northwestern's website and request more info if you think you may be a candidate
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04-12-2012, 03:06 PM
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#6
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Join Date: Apr 2012
Location: Buffalo, New York
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Now wouldn't it also make sense to also try stem cell therapy on somewhat-healthy Crohn's sufferers? For example, in my case I was diagnosed in '07, quickly flew through drugs like Pentasa, 6-Merc, Apriso, and Lialda, now taking Remicade. I've got severe inflammation but have yet to need something so serious as surgery. Would it make sense to still contact them just for information or to see what they say?
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04-12-2012, 03:07 PM
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#7
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Co-Founder
Join Date: Feb 2006
Location: Naples, Florida
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It wouldn't hurt Patrick. The worst thing they can say is no or point you in another direction.
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05-25-2012, 08:41 AM
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#8
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Join Date: Jan 2012
Location: istanbul, Turkey
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Osiris just annonced Prochymal will be market for GVHD in Canada in 22 of May. it does means crohn will be next...
Last edited by lost_messiah; 12-04-2012 at 02:28 AM.
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06-21-2012, 07:02 AM
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#9
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New Member
Join Date: Apr 2011
Location: Inverness, United Kingdom
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Finally!! I have found the stem cell thread!! I am currently on thalidomide but when my year is up I have been offered stem cell transplant, and I cannot wait!! I realise that the preparation is grim but to have such normality after it is worth the chemo IMO. I will be back with updates, I'm so pleased to have found others going through this process
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06-21-2012, 07:26 AM
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#10
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Co-Founder
Join Date: Feb 2006
Location: Naples, Florida
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That's fantastic keeleyann! Please do keep us updated
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06-21-2012, 09:41 AM
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#11
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Join Date: Jun 2012
Location: Queens, New York
My Support Groups:
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Osiris just annonced that Prochymal is in the market for Canada for GVHD in 22 of May. it does means crohn is will be next...

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Can someone explain what this means?
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06-21-2012, 10:19 AM
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#12
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New Member
Join Date: Apr 2011
Location: Inverness, United Kingdom
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Can someone explain what this means?
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Yes, it would appear that this medication is in process of being licenced for crohns, having passed preclinical and being fast tracked by FDA. I live in UK, so am unfamiliar with this medication but in my career as a nurse I've seen this kind of thing for other meds and definitely believe that to be the case.
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07-04-2012, 09:37 AM
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#13
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New Member
Join Date: Jun 2012
Location: Edinburgh, United Kingdom
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Hello, is this available in the uk? Looks like people getting it done are happy with what's happening!
Best friend 91 (Fay)
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07-10-2012, 12:36 PM
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#14
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Join Date: Jul 2012
Location: Gloucester, United Kingdom
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I will also be interested if its being done in the UK, anymore info?
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07-25-2012, 12:59 AM
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#15
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Join Date: Mar 2012
Location: Utah
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Seattle Times posted an article today under the local section....
New hope for Crohn's patients: immune-system transplants
& the link for more detailed information on the study is below.
http://studies.fhcrc.org/cats/
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07-25-2012, 02:34 AM
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#17
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Join Date: Jul 2012
Location: Gloucester, United Kingdom
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Stem cell transplant is different to a bone marrow transplant I thought? But still good news for worst off. But will take years for UK to provide it.
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07-25-2012, 08:06 AM
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#18
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Join Date: Mar 2012
Location: Utah
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Today, a bone marrow transplant is more commonly called a stem cell transplant because it is the blood stem cells that are typically being transplanted, not the actual bone marrow tissue.
Types of stem cell transplantation
There are two main types of transplantation: autologous transplantation (also known as an AUTO) and allogeneic transplantation (also known as an ALLO). A patient undergoing an AUTO transplant receives his or her own stem cells. On the other hand, a patient undergoing an ALLO transplant receives cells from another person. Regardless of the source of the stem cells, a transplant is performed by infusing, or transfusing, the collected stem cells into the patient's vein. The stem cells then remain in the bloodstream for about 24 hours until they find their way to the marrow space, where they grow and multiply, beginning the healing process.
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07-25-2012, 08:09 AM
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#19
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Join Date: Jul 2012
Location: Gloucester, United Kingdom
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Ahh thats why I was confused, thought stem was your own cells and bone marrow was someone elses. Thought bone marrow would be more painful for donor?
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07-26-2012, 03:19 PM
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#20
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Senior Member
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Harvesting bone marrow requires puncturing bone, so I'd imagine it can be quite painful. Harvesting stem cells from someone would require chemotherapy, though, so it's still quite involved.
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08-06-2012, 05:06 AM
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#21
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Senior Member
Join Date: Aug 2012
Location: sydney, New South Wales, Australia
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Hi guys
is there any statistics on the rate of remission for Stem cell Therapy (auto)
I believe from what I read is that it can cure you, or give remission up to a certain time.
I read a few articles from 2001, and it seems there still in remission. Can someone give me more in depth info please.
Thanks
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08-06-2012, 08:27 AM
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#22
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Forum Monitor
Join Date: Mar 2012
Location: Greenville, South Carolina
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I am also having a stem cell transplant for my Crohns. You have to be referred to Dr Burt at Northwestern Memorial in Chicago by your GI after trying absolutely all other conventional treatments and all that is left is surgery. They'll evaluate you and determine your eligibility. Then go from there. They are now doing pretty much donor only cells since Crohns is an immune disorder, using your own stem cells would almost guarantee recurrence of your Crohns. They prefer using sibling donor cells because they regraft easier. They don't use bone marrow anymore. Your donors cells are retrieved via a vein in their neck. Follow my thread and you will get details about the process as I go through it!
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08-06-2012, 04:03 PM
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#23
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Join Date: Jun 2012
Location: North Carolina
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Here is an article I read on a US website and originally appeared in the Beeb.
bbc.co.uk/news/health-19111700
(This is only my second post so I can't post a hyperlink, sorry)
It basically says that cancer patients going through chemotherapy develop a resistance to the chemotherapy (or the tumor cells in your body do.) It can also create an undesired response in healthy cells.
Just curious if anyone had any thoughts on how this might affect the stem cell transplant treatment for Crohn's where the patient goes through chemotherapy first.
It seems like if it causes proteins to grow exponentially too quickly you might get cured of Crohn's and get cancer at the same time.
?
Last edited by levi; 08-06-2012 at 04:30 PM.
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08-06-2012, 07:17 PM
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#24
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New Member
Join Date: Aug 2012
Location: Pasadena, Texas
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What kind of preparations are there for a stem cell transplant? I have heard it can be pretty painful, is this true?
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08-06-2012, 07:35 PM
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#25
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Forum Monitor
Join Date: Mar 2012
Location: Greenville, South Carolina
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So far they don't see any cancer risks for this type of stem cell transplant but it's still relatively new so we don't know until it's been tested. The procedure is not painful because the donor cells are retrieved via blood from a vein in the neck and it is infused intravenously as well! Hope that helps!!
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12-04-2012, 02:35 AM
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#26
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Join Date: Jan 2012
Location: istanbul, Turkey
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Hi guys
is there any statistics on the rate of remission for Stem cell Therapy (auto)
I believe from what I read is that it can cure you, or give remission up to a certain time.
I read a few articles from 2001, and it seems there still in remission. Can someone give me more in depth info please.
Thanks
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Moe, company declared Prochymal reduce 105 point of CDAI rate after 28 days start therapy. Patient's CDAI rate were 350.
Here is the queote
Trial Design
10 patient, prospective, randomized, open label trial
Average CDAI was 350
Average length of disease was 14 years
Failed previous treatment with steroids, methotrxate, and Remicade
Efficacy Results
Every patient evaluated had a reduction in disease severity by day 28
105 point improvement in CDAI (p=0.004)
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12-04-2012, 02:41 AM
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#27
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Forum Monitor
Join Date: Mar 2012
Location: Greenville, South Carolina
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I am a recent allogenic stem cell transplant recipient. While I cannot offer you statistics I can tell you about my experience and what the doctor has told me. In my case, there aren't enough long term studies to determine any 100% guaranteed results. But there should be an instant minimal improvement in symptoms post transplant, every day getting better. By the 6 month mark, the tests should show significant reduction in inflammation. And all of this will be achieved without Crohn's medications. I personally have had huge success but you can follow my transplant in detail on my Crohn's forum thread (see my profile) or my blog lifeofacrohnie.blogspot.com
Hope this helps!!
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12-04-2012, 11:34 AM
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#28
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Senior Member
Join Date: May 2011
Location: New York
My Support Groups:
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Thanks for sharing jmc. While dd hasn't been "sick enough" on the CDAI scale to qualify for the pediatric trial, I am closely following this option as we narrowly missed a colectomy this fall. Please keep us posted!!
__________________
Angie, mom to Izzi,11 Crohn's Colitis 1/11 prednisone, entyvio since 2015 (every 4 weeks, added methotrexate in 2018) Tried: budesonide, Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
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03-16-2013, 02:43 AM
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#29
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Forum Monitor
Join Date: Mar 2012
Location: Greenville, South Carolina
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I am recovering incredibly from my stem cell transplant! I feel amazing!! If you have questions just ask!
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03-16-2013, 06:32 AM
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#30
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Senior Member
Join Date: May 2011
Location: New York
My Support Groups:
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So glad that you are feeling well and keep us posted as time goes on how you are doing clinically...I am super interested in hearing the results!! Hoping if/when Tacro starts causing SE for dd this is an option for us...
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