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Crohn's Disease Forum » Treatment » Most exciting breakthrough that you're MISSING!!


08-29-2011, 06:09 PM   #1
Guest9283
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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.
08-29-2011, 06:15 PM   #2
MJones
 
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Thanks. I kept skipping over that myself thinking it wasn't applicable to me.

Link for others: http://www.crohnsforum.com/showthread.php?t=16284
08-29-2011, 06:23 PM   #3
Misty-Eyed
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I'm glad everything is going well for you, Ziggy.

Yes, it is very exciting and everyone here is lucky to have access to the updated news of how he's getting on. Shame it's too late for me but hopefully lots of other people will benefit from it.
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08-29-2011, 06:33 PM   #4
Guest9283
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I'm glad everything is going well for you, Ziggy.

Yes, it is very exciting and everyone here is lucky to have access to the updated news of how he's getting on. Shame it's too late for me but hopefully lots of other people will benefit from it.
Hi Misty - how are you =)

I know someone who is in the same situation as yourself. Unfortunately they are still having problems after surgery. She is hoping to be approved for a Donor transplant, so that she can get rid of the crohns once and for all. She then is hoping for a J pouch. So sorry to hear about your rough times Missy

God bless.
08-29-2011, 06:42 PM   #5
Misty-Eyed
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You can still call me Michelle :P We're past informalities now.

I am excellent minus the obvious, thank you.

Well all my Crohn's is located in my colon and there's been no sign of it in my small intestine, so hopefully once the colon has gone, so will my Crohn's for a few years, I'm hoping. If not, then I guess a transplant may be an option. At the moment I don't really mind as long as there's no signs of cancer. I guess I won't know for sure till my op but I'm feeling positive.

I hope life is going well for you. I've missed you.
08-29-2011, 09:05 PM   #6
Mark in Seattle
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Is mucositis a key risk for the stem cell therapies being done in the Crohn's trials now? I was reading on a cancer site about mucositis being a key risk of bone marrow transplant, but it also mentioned radiation as part of the regimen; I don't think there is any radiation involved with the Crohn's regimen though, right? So is mucositis still an issue potentially?
08-30-2011, 09:50 AM   #7
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Is mucositis a key risk for the stem cell therapies being done in the Crohn's trials now? I was reading on a cancer site about mucositis being a key risk of bone marrow transplant, but it also mentioned radiation as part of the regimen; I don't think there is any radiation involved with the Crohn's regimen though, right? So is mucositis still an issue potentially?
Mark I hear your concern.

Although I would like everyone to know that there are different stem cell transplant and bone marrow procedures for every situation and disease. This would mainly include the difference between the many varying chemos, and combination of chemos used. Burt has made the procedure pretty tolerable compared to what you might read on other disease transplant procedures. You can see so in my blog, and in Effdees blog. So far I have talked to about half of all the patients Burt has done for crohns disease in the non donor transplants. None of them had Mucositis, nor did any of the 3 in my group. I don't really think that is a concern at all honestly. However if you would like to learn more, or go into more detail im sure Kristin or Paula over at dr burts could help you. I encourage every that has questions to call them. Just a phone call...

312-503-1435. Just tell em you have crohns and you want to know more about the allogeinic transplant. Then shoot away with your questions
08-30-2011, 10:01 AM   #8
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Also want to appologize for calling Effdee a kid. I forget sometimes that i am not as old as this body feels! lol

Sorry Patrick! =)
08-30-2011, 03:13 PM   #9
effdee
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No apology necessary, Mr. Ziggy! I have no issues being called a kid. I'm still not used to being called "Mr. Dement," yet.

Misty-Eyed: You mention that it's too late for you for a stem cell transplant. What would make you ineligible? In regards to a stricture I have, Dr. Burt told me that healing of the colon has been better than other parts of the intestines.

Mark: The largest risk in Dr. Burt's protocol is infection while neutropenic. The rest may not be pleasant, but the risk of mortality astoundingly low.


I wanted to clarify that I'm not the first Crohn's patient to undergo an allogeneic transplant. Dr. Burt actually had a patient do one 2 years ago, who is doing well. There should be a paper published about the case sometime soon. Look out for that for more information.
08-30-2011, 05:12 PM   #10
Misty-Eyed
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My strictures are too extensive. Plus they've not been able to see through my strictures for years so they are worried about my risk of cancer. I've had it for 18 years already plus one of my strictures is in my rectum and the scar tissue will never heal so that's my rectum gone for definate. I have spoken to the team that does it here already.

I hope everything goes well for you though
08-30-2011, 07:05 PM   #11
effdee
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Ah, I'm sorry to hear that. It's a sobering reminder that this has its limitations, too, and I am extremely fortunate in many aspects to have had this opportunity. Thank you, and best of luck in the future!
08-30-2011, 09:23 PM   #12
Mark in Seattle
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Mark I hear your concern.

Although I would like everyone to know that there are different stem cell transplant and bone marrow procedures for every situation and disease. This would mainly include the difference between the many varying chemos, and combination of chemos used. Burt has made the procedure pretty tolerable compared to what you might read on other disease transplant procedures. You can see so in my blog, and in Effdees blog. So far I have talked to about half of all the patients Burt has done for crohns disease in the non donor transplants. None of them had Mucositis, nor did any of the 3 in my group. I don't really think that is a concern at all honestly. However if you would like to learn more, or go into more detail im sure Kristin or Paula over at dr burts could help you. I encourage every that has questions to call them. Just a phone call...

312-503-1435. Just tell em you have crohns and you want to know more about the allogeinic transplant. Then shoot away with your questions
I think I would be more interested in trying the allogeinic transplant than trying biologic meds. Seems like skipping over the biologics and going right to the potentially long-term solution would be ideal. I was looking on the clinical trials site and if I recall correctly, I think there were various restrictions on who they let do these transplants. I think for either type of transplant you have to have failed biologics, and correct me if I'm wrong, but for autologous don't you need to be 45 or under and allogeinic 26 or under? I'm 44, so I'm feeling bummed at my prospects if that's true. I think I read that they try to match with siblings. I have no sibs.

What's up with the cost of these trials? These are trials, right? I thought trials were free to the patient, but I think Patrick indicated that he had to get his insurance co. to fork over $125k or so. Are some trials free and others not?

Anyway, it seems like this is potentially the new standard of treatment a few years or so down the road, if they can work out whatever kinks and prove it's all that. It's a shame these things always take so many years to get through the system & get approved. Seems exciting if they can get it dialed in.
08-30-2011, 10:16 PM   #13
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Mr. Ziggy. I read your story a while back and I was so impressed and happy, I told everybody about it. I read that you are doing good. Does that mean that you don't have Crohn's anymore? No symptoms at all? My son is 11 and he's on Remicade and doing great. But I know Remicade will not work forever. I worry A TON about what will happen then.I have told him about SCT and I don't want to wait until he's so sick he won't be eligable.He's too young now anyway.I'm just surprised that more people don't go through the treatment considering how sick a lot of them are.For my own sanity, I just have to believe that one day this will be an option for my son. I would do anything for that to happen.Thank you for inspiring me and my son. Cecilia
08-31-2011, 04:15 PM   #14
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Mr. Ziggy. I read your story a while back and I was so impressed and happy, I told everybody about it. I read that you are doing good. Does that mean that you don't have Crohn's anymore? No symptoms at all? My son is 11 and he's on Remicade and doing great. But I know Remicade will not work forever. I worry A TON about what will happen then.I have told him about SCT and I don't want to wait until he's so sick he won't be eligable.He's too young now anyway.I'm just surprised that more people don't go through the treatment considering how sick a lot of them are.For my own sanity, I just have to believe that one day this will be an option for my son. I would do anything for that to happen.Thank you for inspiring me and my son. Cecilia
I'm so glad my story could bring you some hope! I believe it will be avalible for your son one day. Burt said the buidling across the road was busy being build for a childrens hospital. Stem cell transplants for children were planning to be done there. I am feeling good. I did however get my own stem cells. The new direction is donor stem cells. I believe in the donor option. If my crohns came back I would do the donor stem cell transplant in a heart beat if i could. I don't know why many more people don't do it either...but if i say that then I'll get flamed. lol. There have been a few from the board that have done it however. They just preffered to keep private. I did talk to Robert yesterday. He did the transplant the same time as I. He is as healthy as ever. Turned Vegan too, with 1 bowel movement/day from 20 (I know he wouldn't mind me sharing). He had crohns for 20+ years before doing the transplant.
08-31-2011, 04:25 PM   #15
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I think I would be more interested in trying the allogeinic transplant than trying biologic meds. Seems like skipping over the biologics and going right to the potentially long-term solution would be ideal. I was looking on the clinical trials site and if I recall correctly, I think there were various restrictions on who they let do these transplants. I think for either type of transplant you have to have failed biologics, and correct me if I'm wrong, but for autologous don't you need to be 45 or under and allogeinic 26 or under? I'm 44, so I'm feeling bummed at my prospects if that's true. I think I read that they try to match with siblings. I have no sibs.

What's up with the cost of these trials? These are trials, right? I thought trials were free to the patient, but I think Patrick indicated that he had to get his insurance co. to fork over $125k or so. Are some trials free and others not?

Anyway, it seems like this is potentially the new standard of treatment a few years or so down the road, if they can work out whatever kinks and prove it's all that. It's a shame these things always take so many years to get through the system & get approved. Seems exciting if they can get it dialed in.

Biologics, prednisone, and anti inflammatory. 18 - 70 years old. Those were the requirments last time I checked. So you should call that number and ask - I think you might actually qualify.

Lol, yeah trials are free when there is a company trying to profit from the drug. They pay for the trials. No money in stem cell transplants. More so funding from institutions and such for research. For instance - Burt gets paid a set salary from north western no matter how many patients he sees. Thats why it takes so long to get off the ground, because people like Burt are the only ones pushing it foward. Who knows how long it will be till these transplants go public once these trials end. Who would fund it... I urge people to keep that in mind.

Insurance - Aetna is the best bet for coverage.

Definitely exciting!
08-31-2011, 09:31 PM   #16
Mark in Seattle
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Thanks Mr. Ziggy. I've left a message for Kristine. I'd like to know more. I have United Healthcare. Thanks for sticking with this thread.
08-02-2012, 12:22 PM   #17
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Are there viable private options available that people know of? I'm looking into this, as well. I'm very amazed by the potential. For the first time, I feel like there might be an end to this...

My Grandfather died of lymphoma so I am basically terrified of ever considering Remicade and all the other things that have the lymphoma risk associated. So I'm wondering if a private facility that will just take money might accept me since I haven't used those meds yet?
08-02-2012, 12:49 PM   #18
Guest9283
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Are there viable private options available that people know of? I'm looking into this, as well. I'm very amazed by the potential. For the first time, I feel like there might be an end to this...

My Grandfather died of lymphoma so I am basically terrified of ever considering Remicade and all the other things that have the lymphoma risk associated. So I'm wondering if a private facility that will just take money might accept me since I haven't used those meds yet?
As long as the bills are paid it doesn't matter where the funding comes from. I have seen them cut the bill down considerably for people who had bad luck with insurance. Lowest I've seen was around 120k. Coming down from 200k+. You would still need to qualify for the trial, but I encourage everyone who is interested to go at least make an appointment - even if you fail to meet the posted criteria slightly. Rules can and have been over turned based solely on compassion cases approved by Burt. He's a good guy.
08-02-2012, 12:51 PM   #19
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Hey Ziggy, is a SCT the same thing as a bone marrow transplant? I saw an article recently about someone treated with a BMT for leukemia and it made his Crohn's go away. Just wondering if that's the same thing.
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08-02-2012, 12:52 PM   #20
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And my sister has already voluteered to donate, considering they usually look for a sibling (at least in the BMT case).
08-02-2012, 01:26 PM   #21
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Hey Ziggy, is a SCT the same thing as a bone marrow transplant? I saw an article recently about someone treated with a BMT for leukemia and it made his Crohn's go away. Just wondering if that's the same thing.
Essentially yes it is the same thing. The only difference is the source of where they are getting the stem cells. One is taken from the bone, and the other is taken from circulating blood. Proficiency was noted long ago to be better with the stem cells vs the bone marrow when treating leukemia patients (70% vs 45%) and that is when bone marrow transplants essentially became stem cell transplants.
08-02-2012, 07:11 PM   #22
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Is there anywhere where we can read a detailed list of serious side effects? Something more than "you could develop cancer in the future"? Obviously, this might be all we know at the moment.

Right now, I'm trying to see if I can quantify (in some small way) my risk of (colon) cancer from UC (have had a flare for about a year now so I know that increases my odds) vs. my general risk of cancer (or dying, basically) from SCT. If I can get some grasp of the odds (or at least the span of the odds), it would help me make the decision much more. Or, to be specific, help my wife with the decision process

I might be asking for something that doesn't exist. But if it does, I'd love to find out those answers
06-17-2014, 04:12 PM   #23
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Is this the stem cell trial with Dr. Burt where the immune system has to be shut down and rebooted and there is chemotherapy involved?

I heard there is another type of stem cell trial in Emory where one does not have to go through all of these things and it is safer? Has anyone tried that one?
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