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


 
03-01-2011, 05:29 PM   #1
effdee
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My Stem Cell Transplant Blog

Link to my blog: http://mypsct.blogspot.com/

I'm scheduled to be evaluated next week (3/7-3/9) for the transplant. I've tried and (eventually) failed Pentasa, Entocort, Sulfazine, Prednisone, Azathioprine, Remicade, Humira, Cimzia, LDN, some more of the milder 'maintenance' drugs I know I'm forgetting, and the SCD.

I'm currently on Cimzia, LDN (it's helping slightly, but not much), Amitriptyline, Aciphex (reflux), smoking (vaporizing) marijuana on and off, and sticking pretty closely to the SCD (still drinking milk). My symptoms have been up and down over the last few weeks, but I have no fewer than 8-10 bm's and up to 14 or so, usually with diarrhea and bleeding, lots of burping whenever I eat/drink or go to the bathroom, and moderate stomach pains.

I should find out whether or not I'm eligible by the 9th after I see Dr. Burt. I'll be sure to update this and, if I do the transplant, I'll make a blog (in some fashion) about it.
03-01-2011, 05:37 PM   #2
Cat-a-Tonic
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Good luck with everything! I hope you are able to get in and it works wonders for you. I'm not even diagnosed yet myself, so stem cell therapy is a long way off from being an option for me, but it's really interesting and exciting for me to read about others' experiences with it.

If you get accepted, I'm looking forward to reading your blog! Best of luck and let us know how it goes!
03-01-2011, 08:16 PM   #3
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I wish you luck! Please do keep us posted!
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03-02-2011, 10:42 PM   #4
effdee
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Thank you both - will do!
03-03-2011, 11:30 AM   #5
DMS
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Good luck - I hope you get accepted and that there will be another success story for stem cell therapy.

Looking forward to your updates.
03-03-2011, 04:24 PM   #6
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I am curious as to what would make you ineligible?

You have clear 'refractory' disease.

*I ask, because I have pretty much failed everything on your list except LDN (which I try next), and may have to look at this path too (stem cell).

Have they expressed what would make you ineligible, like some other preexisting condition? Or, do you have to be Really, Really ill (severe symptoms etc..)?

I hope it works out for you, and will be sending you my thoughts and wishes.
03-03-2011, 05:20 PM   #7
Cat-a-Tonic
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JJOM: I believe Mr. Ziggy outlined the eligibility requirements in his thread about stem cell treatment. If I'm remembering right, the main requirements are that you have to have been diagnosed for at least 5 years, and you have to have tried and failed all the usual mainstream treatments (steroids, biologics, immune suppressors, etc). Since I'm undiagnosed, and since Entocort is working well for me, I wouldn't qualify.
03-03-2011, 05:25 PM   #8
ThanksP
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Best of luck to you!

I'm curious how the travel is paid. Is it paid thru your insurance, out of pocket, combination, etc? Also, do they also pay for a family member while you are there?

Cimzia is failing me as well so I'm always very interested in anything I can read about this treatment.
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03-03-2011, 06:45 PM   #9
bobtheman
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good luck. i hope it works extremly well and it is a miracle cure for you.
03-07-2011, 02:38 PM   #10
effdee
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I am curious as to what would make you ineligible?

You have clear 'refractory' disease.

*I ask, because I have pretty much failed everything on your list except LDN (which I try next), and may have to look at this path too (stem cell).

Have they expressed what would make you ineligible, like some other preexisting condition? Or, do you have to be Really, Really ill (severe symptoms etc..)?

I hope it works out for you, and will be sending you my thoughts and wishes.
In my case, the only things that would make me ineligible would be that my Crohn's isn't severe enough at the evaluation (turns out I've been my sickest in a while at the perfect time - my colonoscopy this morning showed very active inflammation, so I think I'm good there) or that I would not be healthy enough to handle the chemo required for the transplant. They do a lot of pre-testing right before you would start the mobilization chemo to check for every and anything that might be an issue. I'm in pretty good health aside from Crohn's, so I don't forsee any issues there. If there were, though, it would depend on what it was. It could be something they could treat/fix and then proceed with the transplant after you've recovered.

In general, yes, you have to be pretty ill with Crohn's, though. I'm not exactly sure what that means to the transplant docs but I will ask when I see them and let you know what I find out. That's been one of my biggest questions.

Thank you!
03-07-2011, 02:58 PM   #11
effdee
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Best of luck to you!

I'm curious how the travel is paid. Is it paid thru your insurance, out of pocket, combination, etc? Also, do they also pay for a family member while you are there?

Cimzia is failing me as well so I'm always very interested in anything I can read about this treatment.
Thanks!

The travel/hotel for the evaluation has been out of pocket for my family so far. Paula (one of the transplant nurses) said not to mention "stem cell transplant" to my insurance company or else they'd get all riled up! I'm going to look into possible reimbursement once I get home. As for the travel/hotel for the transplant itself, I know some have gotten a sort of travel allowence for it. I'll try to find out more about that later.

My mother, luckily, has a bunch of paid sick days/ill family member days saved up so she's covered for the evaluation. I think she'd have enough for majority of the transplant process, as well. That's all through her employer, though. My insurance wouldn't have a hand in that.


If anyone has questions feel free to ask. I'd love to get some answers for you.
03-10-2011, 12:13 AM   #12
gt91
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any update effdee? i have also contacted Dr. Burt regarding my condition. I haven't heard back from them yet. Btw, what insurance company do you use?
03-10-2011, 01:43 AM   #13
effdee
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I just got back home a few minutes ago. I've been accepted for an allogeneic stem cell transplant using umbilical cord stem cells. The next piece to work on is getting insurance approval. I have CareFirst BlueCross/BlueShield PPO which Dr. Burt said is a huge pain to fight with, but they have paid a majority of the time.

It still hasn't sunk in that I could very realistically live without Crohn's soon. I'll keep you all updated. Time for bed.
03-10-2011, 07:00 PM   #14
effdee
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So the trip went very well. No real problems/issues with anything. The evaluation took place at Northwestern Memorial Hospital and I have to say it is a fantastic place. Everyone was very pleasant and helpful. Only really had to wait more than a couple minutes for the CT enterography. The colonoscopy and CT enterography showed very active Crohn's in my colon.

I saw Dr. Craig and we went over symptoms, medications, and the usual questions. He examined me, then we did a brief history and he thought I would be eligible for the transplant, and sent a message to Dr. Burt saying so. My blood work results hadn't come in yet but he said he would go over them once he got them.

My visit with Dr. Burt was similar. A bit more in depth history, current symptoms/medications. No medical issues aside from Crohn's. Dr. Burt was interested in doing an allogeneic transplant rather than autologous because, if stem cells from a non-Crohn's patient were used (meaning not my own or my brother's since he has Crohn's, too), it would decrease my chances of relapse. He said at 3 years out, 80% of patients had relapsed but were in remission with medication and thought using stem cells from umbilical cord blood would do even better (he has only done it with one other Crohn's patient so far). From what little I currently understand about that part of it, getting the allogeneic transplant will add the risk of graft vs host disease. Dr. Burt said that the way they do it, it "shouldn't" happen, but that's what I don't completely understand yet.

My blood work results were ready shortly before my appointment was over but I forgot to ask about it (head spinning from everything else), so I'll get in touch with the nurse tomorrow to ask about it.

My insurance company is one of the biggest pains in the ass (literally) about paying for this, apparently, so it could be a matter of months before they approve it, if they do. Dr. Burt said it was $125,000 (less than I thought) and kept insisting we'd be able to fight enough to get it paid for, but it's at least within a realm of possibility for my family to afford it if it comes to that. The financial team at Northwestern is supposed to write a letter to my insurance company and work with them to get it taken care of. It's possible that my mom (my insurance is through her) can ask her employer to get involved and pressure the insurance company to pay and help things along.


Feel free to ask any questions in case there's something you'd like to know that I left out. I'm still exhausted so I probably could have gone over everything a bit better but, oh well!

Last edited by effdee; 03-22-2011 at 02:41 PM.
03-10-2011, 10:28 PM   #15
gt91
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thanks for the update, effdee, glad it went well.
it seems like the relapse rate is a little high. If I had the transplant, I wouldn't want any medication afterward.
03-13-2011, 01:17 PM   #16
joshw2011
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Yeah the relapse rate is not what I was expecting at all... From what Ziggy said it sounded like it was either a cure or something to keep you Crohn's free for years and years...
03-13-2011, 07:02 PM   #17
effdee
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Since the jury is still out on the real trigger for Crohn's, it makes sense (to me) that it's almost inevitable to relapse. If you have Crohn's, you've already had the genes mutate once that cause Crohn's. There isn't really anything being done to that, just the immune system. The next big piece would be to find out what can be done to reduce the chances of that happening.

I wouldn't be hung up on having to take medication in the future. Honestly, I'd do the transplant if it only just made everything that's stopped working for me work again. Being on medication is completely acceptable, for me, as long as the disease is under control and I could function, get through school, and so on.
03-14-2011, 04:03 PM   #18
gt91
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point taken, effdee.

I don't know if you've read Dr.Burt's paper regarding long-term follow-up (5 years) of his stem cell transplant trail study. Out of 24 patients that had stem cell transplants, 9 patients have not relapsed to date, and of 15 patients who restarted therapy 8 patients subsequently became medication-free for the second time. Percentage of patients who remained in remission independent of therapy was between 70% and 80%.

As long as your condition is in remission and you don't have to take steroids, I think the transplant is well worth it. Let us know how things go.
03-25-2011, 05:59 PM   #19
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update please when will ur transplant be? when will you find out?
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03-25-2011, 06:20 PM   #20
JJOM
 
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gt91,

Do you know where we can read the paper you are referencing? I would appreciate it.

Thanks,

JJOM

I would also like to 'publicly' thank effdee with his help with a few questions I had in a recient PM.

'Effdee's journey' has already been a great help to me.
03-25-2011, 09:18 PM   #21
joshw2011
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http://www.stemcell-immunotherapy.org/pub_pub.html#cro

This has several Crohn's articles. The specific article is at

http://www.stemcell-immunotherapy.or...dfs/6123-2.pdf
03-26-2011, 12:02 PM   #22
effdee
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update please when will ur transplant be? when will you find out?
Nothing to update yet, unfortunately. Still playing the waiting game.



Always happy to help, JJOM!
04-26-2011, 12:37 PM   #23
effdee
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Still no word from my insurance company. They lost some of my paperwork, which Northwestern had mistakenly shredded so they couldn't send it again, but I still had copies of what they needed and faxed it to them.

I've been feeling a bit better over the last week and a half or so. I had a Cimzia dose around then, so it seems like I'm getting some benefit out of it for a couple days, at least.
04-26-2011, 01:48 PM   #24
joshw2011
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I hope everythink works out for you! I too am waiting on insurance! My GI and I contacted Northwestern and they approved me for a visit, and they are now working on getting some old medical records, just picked up my most recent records copied today and mailing those soon. Basically just waiting on insurance to approve a "second opinion" ... Which could be a struggle because I live in Dayton, Ohio so the insurance will want a second opinion somehwere closer than Chicago, but I can still hope for the best! My doc said the insurance could take a few months so now I just patiently wait...
04-26-2011, 02:43 PM   #25
guest23
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I think the stem cell transplant Ziggy had done was exactly what he said it was - it gave him his life back. You must remember that these patients are extremely ill - and the stem cell transplant completely cured 9 out of 24 patients - and of the remaining 15 that did have to take a course of treatment for a patchy area of inflammation or whatever, eventually 9 went back to no meds whatsoever. So, for 17 out of 24 people to go from being the sickest of the sick, to living a life without crohns or meds is truly amazing. I look forward to Effdee story - and hope and pray that his insurance company does not take long to do the right thing. By the way, you do not have to be diagnosed for 5 years in order to be eligible for the transplant. Basically, Dr. Burt (the immunologist and head of the transplant team, Dr. Craig (the gastroenterlogist), and sometimes Dr. Halverson (the colorectal surgeon) will discuss each case, and make an independent decision of whether they feel the patient should proceed with the transplant. Dr. Burt makes the final decision. I just pray that all these brave people who proceed with these transplants lead to a 100% cure oneday - where no-one has to live with Crohns ever again.
05-31-2011, 05:12 PM   #26
effdee
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I was hoping my next post here would be saying when I'd be starting the transplant, but I still don't have my schedule yet. Still good news, though!

My insurance company has approved the transplant! Due to a few delays for various reasons, it will be another 4 weeks or so until I get scheduled. My blood arrived at the lab today for HLA testing (to find matching cord blood stem cells). It will take 2 weeks to get the results, 2 weeks to look through the registry for a match and obtain it, and then I will be scheduled. It looks like I'll be starting sometime in July.

No significant changes in my health. Still the same old up and down. Cimzia helps a little bit for about a week and a half after each dose. My weight has been stable around 132lb. I'd really like to have a set date to look forward to, but it's relieving to know that it's going to happen before long.
05-31-2011, 05:29 PM   #27
LOSTnut
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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?

Not that it matters to me. Banking cord blood wasn't an option when I or my daughter were born. Just wondering ....
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06-01-2011, 10:52 AM   #28
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Great to hear effdee. I have been hoping to hear good news about this (temped to email you a couple of times, but I figured it will play out as needed).

LOSTnut's question is interesting. My first child was born a couple of weeks ago, and we did 'bank' the cord blood. I guess for a disease like ours, that probably has a genetic component, a patient may not want to use their 'own' stem cells. Hopefully those cells will never be needed, but with the way medical technology is headed we figured it was a great 'insurance' policy.

Hey, Maybe some day I could 'borrow' some of my kids stem cells for my crohn's.

Question for effdee: Have they told you to do anything to prepare for the chemo/treatment?
06-01-2011, 12:53 PM   #29
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?

Not that it matters to me. Banking cord blood wasn't an option when I or my daughter were born. Just wondering ....
Great question. I'm not entirely sure, but it's possible that would have made things easier. From what I understand, part of the attractiveness of cord blood stem cells is their naivety, meaning they're 'potent' stem cells without many major biological influences at that stage. I would think having stem cells from my own cord blood would nearly eliminate any risk, as far as graft rejection and graft vs host is concerned, and still be good candidates for use as they weren't as 'involved' with my immune system compared to stem cells obtained via the autologous route.

As far as the approval processes for being accepted for the study and insurance coverage, I can't say. I will ask Dr. Burt about this and make a post about it when I can talk to him. For the insurance side, I have no idea what they base their decisions on and what could influence it. It would make sense that they're more inclined to pay for something with a lower risk, but who knows.

Great to hear effdee. I have been hoping to hear good news about this (temped to email you a couple of times, but I figured it will play out as needed).

LOSTnut's question is interesting. My first child was born a couple of weeks ago, and we did 'bank' the cord blood. I guess for a disease like ours, that probably has a genetic component, a patient may not want to use their 'own' stem cells. Hopefully those cells will never be needed, but with the way medical technology is headed we figured it was a great 'insurance' policy.

Hey, Maybe some day I could 'borrow' some of my kids stem cells for my crohn's.

Question for effdee: Have they told you to do anything to prepare for the chemo/treatment?
Go ahead and shoot me an email when you have some time. I'd love to hear how you're doing with things.

Congrats, JJOM! Banking your child's cord blood definitely sounds like a great idea. There's more and more being done with stem cells each day.

Nothing too specific about preparing for chemo. I'm doing my best to keep my weight up, and avoiding other illnesses is always a good thing, since you want to be as healthy as possible in general going into chemo.
06-01-2011, 01:12 PM   #30
LOSTnut
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If I would have had my daughter after becoming sick and banking being available I would have jumped on it.

But, as I said, back then it wasn't an option and I know the initial banking is a bit pricey. Still, if available and healthy I probably would have, at least, donated the blood and tissue.

Personally, I think it is great, especially when you think what good it can do and that it is basically treated like biohazard and discarded of.
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