No cure?

[xoxava]

no cure?

so as many of you know i am scheduled for an evaluation for a stem cell transplant. ive had a very difficult time with my crohns ever since being diagnosed. ive been doing a lot of research and ive read some different things. so, is there a cure for crohns or no? if i did the stem cell transplant am i just getting my hopes up in a treatment that will be a quick fix, but nothing really long term to count on? i was really excited when i started remicade and i was devastated when it stopped working. this game is really wearing me out!

on a side note, i had a pill cam last monday..and i didnt go to the bathroom all week! i went to the er with severe pain and chest pain so bad because the pressure had nowhere to go. they told me to do mag citrate and i would be ok. well nothing happened. so after speaking with my GI, 4 bottles of mag citrate, 2 enemas, and 12 laxatives later, i was able to go. i never thought i would say that i missed going to the toliet!!! now being in there all day again, why did i want this?!!! lol!

 

[tiloah]

It seems like people are really optimistic, but from what I have read the preliminary studies haven't been promising. I haven't delved very deep though.

I know I am hoping it works really well for you but I think it's important that you not expect it to be a miracle cure. It may make your life and your symptoms a lot better but you still need to recognize that you DO have a lifelong chronic disease for which there is no known cure. I guess I'm just saying that it's good to be hopeful and optimistic, but also try to be realistic. I don't want to see you be devastated again.

You are always in my thoughts and I am hoping for the best possible outcome for you! You deserve to feel good and to have a break from all this. *big hug*

 

[Guest9283]

It seems like people are really optimistic, but from what I have read the preliminary studies haven't been promising. I haven't delved very deep though.

I know I am hoping it works really well for you but I think it's important that you not expect it to be a miracle cure. It may make your life and your symptoms a lot better but you still need to recognize that you DO have a lifelong chronic disease for which there is no known cure. I guess I'm just saying that it's good to be hopeful and optimistic, but also try to be realistic. I don't want to see you be devastated again.

You are always in my thoughts and I am hoping for the best possible outcome for you! You deserve to feel good and to have a break from all this. *big hug*

Ok... So you have not delved into it deeply but you can offer advice, and information which you seem sure is correct and sound... Cause quite frankly it isn't. I would love to see these preliminary studies on allogeinic stem cell transplants you have, I really would?????????? Or are you making the mistake of talking about the autotogulous transplant studies?

I've repeated myself over and over about this. You need to undertand there is a MAJOR DIFFERENCE betwen AUTOGULOUS and ALLOGEINIC transplants. The one transplant is using your OWN blood, and no longer even available to anyone. The ALLOGIENIC transplant is the new phase, using DONOR cells (NO CROHNS IN THEM, THATS THE DIFFERENCE, PRETTY IMPORTANT TO NOTE) So far the last study results were 4 allogenic transplants ended up in 4 people CURED....or totally in remission for 15 years and counting. Then there is the 2 that Burt did, both doing well (1 in complete remission for 2 years and counting). Thats 100% so far Nic. So Im not sure I would tell someone who is about the undergo an ALLOGENIC stem cell transplant that the study was not promising, if i hadn't done any research at all. I know you were just trying to help her, maybe just double check yourself before you answer such an important question so easily as you did.

Ava - you already know what my opinion is. However that is just an opinion too. What I can tell you is this - Burt wouldn't be going foward with this if he didn't think he had a good chance of a potential cure. He isnt after a relief drug, and that is why he stopped doing autogolous transplants even though they saved many people's lives, including my own! Even if I had to relapse, I would do it again if i had too. The AUTOGOLOUS transplant held a 91% success rate of saving your life when all else failed. Thats been proven about 32 times now through just dr. burt alone. However it was not a cure, that is why we now have the ALLOGENIC(donor) transplants WHICH IS TOTALLY DIFFERENT NIC!

No one can really tell you if its a cure because it is cutting edge medicine. The only people that might have any sustance in their answer would be the 6 that have done it so far...im willing to bet that most of them are calling it a cure after 15 years. It is so frustrating to me, when I see people out there get confused about stem cell transplants. They all think that its one and the same and that is wrong. The AUTOGULOUS uses your own stem cells in the transplant, hence the relapse some patients have seen. The ALLOGENIC uses a DONOR stem cells in the transplant - there is a HUGE difference, not only in the transplant, but in the results.

 

[tiloah]

I was simply posting the information I had at my disposal, I'm sorry if you think that was incorrect for me to do, but it's all I can do on any post I make on this forum. It's good for people with more or different information to come on and correct me.

In the scientific community, four (or six) people is not exactly considered a valid sample size, regardless of how promising the results are in that population. It's fantastic to hear something that contradicts my own research on the subject. I would still be reserved about it, and wouldn't want to get my hopes up about a "miracle cure." Currently there is no known cure for this disease, and I think if you expect something to cure you, you might be in denial about having a life long, chronic illness. It's good to be optimistic of course, but it's also good not to get your hopes up to the point where you will be devastated. I stand by everything I said in my first post.

I'm glad to hear a treatment saved your life, and I hope the treatment works really well for Burt! I am of course still pro stem cell research (and all research!), I just don't think it hurts to be wary of thinking ANYTHING will be a "miracle cure."

I do hope I'm wrong, but at this stage I don't think it's inappropriate to be cautious.

Here's one study:

Four of 5 patients followed up for 4.5 to 15.3 years after allogeneic hematopoietic cell transplantation remained free of Crohn's disease.

One patient had a relapse after 1.5 years, another died 97 days after transplantation of septicemia (I'm sure their process has improved since then). Four were in remission 15 years later.

Oddly, since 1982 this is the ONLY study I can find on allogeneic transplantation used to treat Crohn's disease.

 

[Guest9283]

I was simply posting the information I had at my disposal, I'm sorry if you think that was incorrect for me to do, but it's all I can do on any post I make on this forum. It's good for people with more or different information to come on and correct me.

In the scientific community, four (or six) people is not exactly considered a valid sample size, regardless of how promising the results are in that population. It's fantastic to hear something that contradicts my own research on the subject. I would still be reserved about it, and wouldn't want to get my hopes up about a "miracle cure." Currently there is no known cure for this disease, and I think if you expect something to cure you, you might be in denial about having a life long, chronic illness. It's good to be optimistic of course, but it's also good not to get your hopes up to the point where you will be devastated. I stand by everything I said in my first post.

I'm glad to hear a treatment saved your life, and I hope the treatment works really well for Burt! I am of course still pro stem cell research (and all research!), I just don't think it hurts to be wary of thinking ANYTHING will be a "miracle cure."

I do hope I'm wrong, but at this stage I don't think it's inappropriate to be cautious.

Here's one study:

One patient had a relapse after 1.5 years, another died 97 days after transplantation of septicemia (I'm sure their process has improved since then). Four were in remission 15 years later.

Oddly, since 1982 this is the ONLY study I can find on allogeneic transplantation used to treat Crohn's disease.

Nic, you are once again stating facts that are not true – and I cannot begin to explain to you how frustrating it is to deal with someone like you, who is bashing something that they know nothing about, and for some reason, cannot find the time to research what they are saying. You so flippantly take away hope from someone instead of really trying to help them and state the facts. So allow me to correct you.

This is what you wrote:

One patient had a relapse after 1.5 years, another died 97 days after transplantation of septicemia (I'm sure their process has improved since then). Four were in remission 15 years later..

You quoted the above excert from a study to someone who is about to undergo a stem cell transplant, but failed to read the entire report (even tho it was only a half a page long). If you had taken the time to do this, you would have noticed this line:

"One patient with mixed donor-host hematopoietic chimerism had a relapse of Crohn's disease 1.5 years after transplantation".

So, the patient who had a relapse, did not have an allogenic bone marrow transplant from a donor. Instead, they had a MIXED donor transplant. There is a HUGE difference. Allow me to quote from the same study:

Conclusions: Four of 5 patients followed up for 4.5 to 15.3 years after allogeneic hematopoietic cell transplantation remained free of Crohn's disease

And the one that relapsed was the only one who DID NOT HAVE A FULL DONOR ALLOGENIC TRANSPLANT, instead he had a MIX of HALF donor, and half HIS OWN stem cells – huge difference. I believe Burt has no deaths his entire career with regards to this treatment.

You also said:

Currently there is no known cure for this disease, and I think if you expect something to cure you, you might be in denial about having a life long, chronic illness.

I took personal offense to that statement, as would anyone on here if they were accused of being in “denial about having a lifelong, chronic illness!” Let me remind you of what I said, “No-one can really tell you if it’s a cure because it is cutting edge medicine”. That does not sound like denial to me, it is simply stating the facts. Something I wish you would do. I would expect more from a forum monitor.

 

[tiloah]

I apologize for offending you, that was not my intention.

I did my best to research the subject, obviously you do not agree, I will happily stop attempting to learn more/open discussion.

I simply think a degree of caution is not unreasonable.

I also am doing my best to pass on my own knowledge, information, and research. I am sorry you find that frustrating, but I do not understand why you feel the need to make it personal. I am doing my best.

 

[Guest9283]

I apologize for offending you, that was not my intention.

I did my best to research the subject, obviously you do not agree, I will happily stop attempting to learn more/open discussion.

I simply think a degree of caution is not unreasonable.

There was no disagreement. You were simply wrong twice in a row. You were also very rude and attacked me. I noticed you edited your last post to be less condocending and offensive. YOU were the one that made it personal when you accused me of being in denial, and i just find it very offensive when you were so sarcastic in your post before you edited them.

 

[rygon]

Can we stop arguing please and keep to the original posts question. Its ok to disagree with other peoples posts but try not make it personal.

Cheers

 

[xoxava]

oh my gosh. i am so sorry to have started such a heated discussion. i am just trying to get more knowledge on the topic since i am considering this as a treatment option and i have read many different things on this topic. i guess its hard for me because in a way i want this to be my "miracle". when i found out i was starting remicade i got so excited and i held on to believe that this would be my "cure" for a long time. then when it stopped working i was very disappointed and went back into my original thinking of how depressed i was about having something that would never go away and medicine would only work for a certain amount of time. i am trying to remember that this will be lifelong however i guess like everyone else i am also trying to think "well what if this is the answer ive been looking for" id hate to not try it and look back and wish i wouldve tried this option. i appreciate everyones input on this topic. i do find the research very interesting and if you have found any links please let me know. thank you!

 

[David]

Have you read all the stem cell threads on this forum?