Stem cell therapy trials

[soretum]

stem cell therapy trials

Hi All,

Has anyone had any experience with this? I'm currently making a decision between remicade (humira has been a big fat fail for me as was azathioprine and pentasa) or enrolling in the stem cell therapy trial. Quite a big decision, these are my last two options before a total colectomy.
At the moment I'm leaning towards the stem cell therapy, if I do the remicade now it will exempt me from the trial and from what I have read the stem cells make a lot of sense....however I have an 8 weeks stand down before I can start it and not sure yet whether I can have steroids during this time, not sure I can handle another 8 weeks of feeling so ill and then there's the not knowing if you're getting the stem cells or the placebo... BUT if I have to have the colectomy I want to know I've tried everything I can. Will find out next week if I'm eligible and if I can have the steroids while I wait etc

Would love to hear from anyone who has been enrolled in the trial or from anyone who knows anything about the whole process

 

[Ang]

Stem Cell, we tried humeria didn't do much help. We also tried many other trials, and they all had the option where at any point you can opt out. Seems like the best way forward is to give stem call a chance, If nothing or worse situation then go straight to the humeria.

 

[moogie]

What are stem cell therapy suppose to do anyhow?

 

[Ang]

What are stem cell therapy suppose to do anyhow?

Stemcells repair damaged tissue. They are the cells that form into anything, so a Stemcell can become a liver or a kidney. A Stemcell is the cell that divides and forms The organ. I haven't researched yet what it will do for cD but I'm assuming they would inject it into the infected area? Stemcell therapy is supposed to be the next best thing, people r paying loads of money to have their babies Placenta "stored".

 

[Manzyb]

So this is different than the stem cell transplant? I'm confused!

 

[Becca1991]

Hey soretum havnt spoken to you in a while, how have you been going?

I didnt know they doing stem cell trails in Christchurch,

 

[soretum]

yes it's different to stem cell transplant, it's an IV infusion and from what I know the theory is that the stem cells, which in this case are derived from adult bone marrow, naturally go to any area of inflammation and repair the damage....very crude explanation I know, i did read up on it when my doctor first suggested it and found a good site that explained it really well but I cant find it again. Anyway my doctor is very excited about it as a treatment and from what I've read it all makes perfect logocal sense. I think this is going to be my decision, just a lot of decisions to make around it regarding work etc....it's not easy being sick

 

[soretum]

Hey soretum havnt spoken to you in a while, how have you been going?

I didnt know they doing stem cell trails in Christchurch,

Hi Becca,

Not doing that great really, failed aza and humira and keep getting sicker and sicker, total colectomy is looming Humira worked really well to begin with but just stopped working all together for some reason.
Yes they're doing stem cells, I think once everything else has failed you're eligible, thats me! It all sounds really good in theory, he's excited about it so I think I'm going to do it, wih me luck!

 

[Becca1991]

Hi Becca,

Not doing that great really, failed aza and humira and keep getting sicker and sicker, total colectomy is looming Humira worked really well to begin with but just stopped working all together for some reason.
Yes they're doing stem cells, I think once everything else has failed you're eligible, thats me! It all sounds really good in theory, he's excited about it so I think I'm going to do it, wih me luck!

Aw sorry to hear that atleast the doctor is working close with you, i will be wishing you luck i hope something works for you and you don't need surgery.
I see the doctor on the 22nd March, im doing really well expect for about 4 weeks ago had a little bit of a flare but only lasted one day the doctor just did a calprotectin test that came back at 52 normal <50 so not that high but atleast it ruled out food posioning and parasites and all that stuff.

 

[Ang]

yes it's different to stem cell transplant, it's an IV infusion and from what I know the theory is that the stem cells, which in this case are derived from adult bone marrow, naturally go to any area of inflammation and repair the damage....very crude explanation I know, i did read up on it when my doctor first suggested it and found a good site that explained it really well but I cant find it again. Anyway my doctor is very excited about it as a treatment and from what I've read it all makes perfect logocal sense. I think this is going to be my decision, just a lot of decisions to make around it regarding work etc....it's not easy being sick

Wow it sounds very promising! I pray you find relief. When can you start? How often will you get it? I'm sure the side effects will be minimal or non existent compared to all the others.

 

[Lilyw]

Oh so wish this was me!
I got so close to doing the transplant; did the low dose chemo and had stem cells harvested and then....stop. My precious cells are currently sitting "on ice" in Wellington, NZ. In the end the head of the Gastro dept decided it was too risky and medical evidence didn't support going ahead. Soooo disappointed it didn't eventuate and since then ive had more small bowel removed (large bowel removed due to eaten by Crohns) due to it perforating in two places - due to Crohns - resulting in sepsis/emergency ileostomy. I'm worse off and sicker than I was back then. Can't help but think if I had been allowed to follow the process through I could be in remission now....

I recon they're heading in the right direction with this approach & the results from the studies I've followed risk worth taking. I would leap at the chance to do this, especially when you're in that delightfully selective group of Crohns patients, like myself, who have severe disease & have tried every drug approach and nothing has worked.


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[soretum]

Oh so wish this was me!
I got so close to doing the transplant; did the low dose chemo and had stem cells harvested and then....stop. My precious cells are currently sitting "on ice" in Wellington, NZ. In the end the head of the Gastro dept decided it was too risky and medical evidence didn't support going ahead. Soooo disappointed it didn't eventuate and since then ive had more small bowel removed (large bowel removed due to eaten by Crohns) due to it perforating in two places - due to Crohns - resulting in sepsis/emergency ileostomy. I'm worse off and sicker than I was back then. Can't help but think if I had been allowed to follow the process through I could be in remission now....

I recon they're heading in the right direction with this approach & the results from the studies I've followed risk worth taking. I would leap at the chance to do this, especially when you're in that delightfully selective group of Crohns patients, like myself, who have severe disease & have tried every drug approach and nothing has worked.


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Oh wow Lily so sorry, thats one of my biggest fears is that something acute like a perforation will happen....how long ago was this? They seem to be advancing quickly with the transplants in the US and the UK, it must be incredibly hard to know you were so close:ghug:

The stem cell therapy is different in that it's not a transplant, no chemo etc just an infusion of donor cells but it sounds very promising....I think you've almost made my mind up for me actually, I guess I'm unlucky to be at this point but lucky to be able to give this a go and if it fails I still have inflixamab up my sleeve (which seems to be getting shorter and shorter at a very rapid rate!!)

Waiheke you lucky girl, LOVE that place:dog:

 

[soretum]

Aw sorry to hear that atleast the doctor is working close with you, i will be wishing you luck i hope something works for you and you don't need surgery.
I see the doctor on the 22nd March, im doing really well expect for about 4 weeks ago had a little bit of a flare but only lasted one day the doctor just did a calprotectin test that came back at 52 normal <50 so not that high but atleast it ruled out food posioning and parasites and all that stuff.

So great that you are doing well! Always like to hear news like that

 

[soretum]

Wow it sounds very promising! I pray you find relief. When can you start? How often will you get it? I'm sure the side effects will be minimal or non existent compared to all the others.

Thanks Ang, I think my notes are being screened to make sure theres's nothing to exempt me from the trial then if i'm accepted there's a stand down of 2 months I think before I could start as I've been on biologics....not sure how often I get it thats one of my two million questions I have for the IBD nurse next week. And yes from what I've read the cells naturally migrate to areas of inflammation so side effects are very limited....I'm definitly not going to miss the blocked ears and sinuses from humira!

 

[soretum]

Wow it sounds very promising! I pray you find relief. When can you start? How often will you get it? I'm sure the side effects will be minimal or non existent compared to all the others.

Thanks Ang, I think my notes are being screened to make sure theres's nothing to exempt me from the trial then if i'm accepted there's a stand down of 2 months I think before I could start as I've been on biologics....not sure how often I get it thats one of my two million questions I have for the IBD nurse next week. And yes from what I've read the cells naturally migrate to areas of inflammation so side effects are very limited....I'm definitly not going to miss the blocked ears and sinuses from humira!

 

[Manzyb]

I hope that you get approved for the trial and you get to start soon!! Sending warm thoughts of good health to you!

 

[Lilyw]

Soretum,

I didn't realize they are now trailing donor stem cell infusions, confused the two different approaches. That's really so exciting that they are moving forward with that and I really hope you get selected & have some positive results. I will be watching with invested interest. Isn't there a big chance of reduction with donor cells? I thought that's why they were doing transplants using patients own stem cells - no chance of rejection....

Yeah I was pretty depressed and lost when my stem cell transplant hope. Am currently at the stage where they have done everything and nothing has worked and where do you go from there? I realized just how important it is to have that hope, the chance that there is always something else to try, when that's gone it's hard to keep putting one foot in front of the other. Bloody Crohns, persistent beyond belief.

Keep us updated and good luck
L


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