Xcell in Germany vs UC SCT

Status
Not open for further replies.

Sasori

New member
HI
Can anyone provide some comparisons between going to XCell in Germany and getting your own stem cells from hip bone and injected by lumbar puncture to treat CP vs using umbilical cord stem cells via catheter?
I know Steenblock says UCSCT are better for CP, plus avoids damaging fragile little hips (our daughter is only 3). She's had UCSCT with Ramirez in Mexico and we're quite happy with results, just want to make sure we're running with best option.
Cheers!
 

barbara

Pioneer Founding member
I still don't know of anyone getting great results at X-cell. If anyone reading this has gone there and did, please let us know on this forum!!!!!!!!!!!!!! They do a heck of a lot of advertising, but evidently satisfied patients are either few and far between or so happy they no longer have time to visit forums full of people who aren't well and need help such as this one.

If you are quite happy with the results you are getting, I personally would stick with the treatment you are familiar with. I understand why you are asking about the other however. It is always a good idea to stay on top of changes in the stem cell world, but I don't think X-cell offers anything new for treatment of CP. Hopefully, some of the CP parents will chime in.
 

dlbelbin

New member
I just meet 2 families that have taken their kids to Germany. They are very pleased with x-cell. I did not get nto the specifics as we were at a ballgame. I will follow up with one of the families and see if she would post their adventures.

As to the difference, I do not know or have any credentials. I am aware that x-cell does perform a direct inplantation procedure that I have interests. I am waiting to get an MRI on my wife for the doctors at x-cell to make an eval to perform an LP or a direct inplantation. I will be interested in what they will have to say. Eval is free, so why not. In the meantime---the search continues. I am looking to do therapy for CP on my son and a therapy for TBI for my wife.

I have spoken to 2 doctors that have had several patients go to Germany with little to no results. One Neurologist and one rehab doctor(very good one). One patient with Parkinsons showed no results, several TBI patients that their rehab doctor said he did not see any pre or post changes but added that they(patient) felt they benifited. Kind of a toss up. Great science, clinic, but need to hear more results. Testimonials are just testimonials.

I have spent much time looking for blogs or real poeple throughout the internet and can not find any one that talks of x-cell results. I agree with Barbara as she has noted to me last month and here about anybody with significant improvements. I too invite the Germany folks to tell all!!
 

alex

New member
I know of 2 people that went to X-cell - one with ALS and one with a Stroke. The ALS person went 1 1/2 years ago and didn't see any improvements, as a matter of fact, his condition deteriorated. For the stroke person it's too early to tell.
 

Sasori

New member
Wow....

I thought that with a clinic who treats so many and is so widely publicised there'd be tonnes of positive replies by now. Will be interesting to see how this thread goes....
Did the stroke victim get the lumbar puncture or surgical implantation?
 

barbara

Pioneer Founding member
Someone who has been to X-cell replies -

I received this from a forum member who gave me permission to post it. I thank the member for sending it.


You can state on the thread that a forum member and friend has been to XCell-Center 3 times for a different ailment, saw no perceivable benefit. You can also say that due to some of their practices, that this forum member and friend does not recommend that anyone go to XCell-Center for any treatment at any time. For personal reasons I do not want to reply to the thread or communicate with other forum members, but my advice is to stay away.
As to why I went 3 times, can't really answer that one. I thought something good was happening for a brief time after treatment one, and tried twice more to expand on that. I am a dumb-ass idiot, no doubt!


From Barb:

Members - I have been very skeptical of X-Cell for some time now. They have ads covering the internet to an extent that in my opinion the odds would favor this forum of getting at least one person who had favorable results posting on here, but they have not. I personally was treated very rudely by their U.S. sales representative which doesn't make me a fan, but I would be non judgmental if anyone could really say they had gotten successful treatment there for any disease. Perhaps they should take some of those advertising dollars and expand on their research and fund some clinicals. It's getting to be nothing short of a money game for so many in the stem cell industry. We deserve better than this. We also need to be aware that not every disease is going to be helped with stem cell therapy at this point. It's important to weed out companies willing to take everyone for any condition and treat them all the same. It simply cannot be one size fits all. CP parents need to be especially careful of this when researching treatment possibilities.
 

Aussie Mum

New member
Xcell vs. Beike?

I was really close to heading to Xcell but then heard (read) that because XCell use ASC's they can't concentrate the treatment to focus on neurotropic factors that will specifically target neurological improvments (eg, CD 133, CD 34 and MSCs). As it's unlikely that a child's hip would have high levels of these, it's unlikely that we would see much change in neurological function.

I'm leaning toward treatment in China. I haven't been to the Stem Cell Pioneers site in ages. (Sasori - thanks for the friend invite - it prompted me to look again!)

What's the current mood on this site about treatment at Beike in China? I'm dreading the idea of going for 40+ days but the families seem happy with the results.
 

pink7

New member
Xcell

Hi,

I have 2 friends who have gone to XCELL for Neurological conditions.Their children had mild to moderate benefits with stem cells.Some others report no change at all.

pink7
 

Sasori

New member
There's a kiwi family

who went to 'China', presume Bieke. They going to Germany - probably Xcell now - presume it's because they didn't get the results they expected. Will try to contact them to find out more....
 

barbara

Pioneer Founding member
40 days seems like an awfully long time to go somewhere for treatment. Have you researched other clinics besides Beike and X-cell? If so, what types of treatments were available and what success were they telling you that their patients had?
 

Sasori

New member
Chinese clinics

To the best my knowledge, most chinese clinics mix 3 or so stem cell treatments with intensive physio over a month or so, which is why treatment takes longer. I've not seen anything that would prove this was any more or less successful than having a single treatment and physio carried on at home.

The family I mentioned went to China for a different therapy, not stem cells. They are going to Xcell for treatment. They are going next week. Fingers crossed for them I guess!
 

jdlenner

New member
XCell-Center Results and Patients

Dear All,

I normally refrain from participating in any patient-to-patient discussions. However, in this case, I think it is important for someone who is knowledgeable about our CP treatment to provide board members with accurate information.

Before I do that, I would like to thank Barbara for allowing me access to this message board. As she mentioned, we did have a disagreement in the past over a matter that was unrelated to any patient consultant/prospective patient-type interaction. I think anyone who contacts our US/Canada representatives will find them to be polite, caring and as helpful as possible.

I tried to upload the XCell-Center's most current follow-up data on CP patients but the pdf file I have is 1.27 MB and exceeded the board's size limit. Everyone can view statistics from 30 CP patients here:

http://www.xcell-center.com/treatments/results/cerebral-palsy.aspx

The most current results include 45 patient follow-ups. Anyone who would like to receive a copy via email can request one from me any time at jlenner@xcell-center.com Also, Barbara if you would like to make this document available from within the message board, I would be happy to send you a copy to post. Just let me know.

We have a number of parents who kindly volunteer their time talking to parents who are considering taking their child to Germany for treatment. However, due to the many requests we receive to talk to them, we must limit the numbers by granting access only to the parents of prospective patients who have submitted medical records and who have been approved for either the lumbar puncture procedure or direct surgical implantation. All evaluations are free-of-charge and no obligation.

More information on the entire treatment process can be found here:

http://www.xcell-center.com/treatments/diseases-treated/cerebral-palsy.aspx

If anyone has any questions, please do not hesitate to contact me personally.

Thank you,

Jay Lenner
US Regional Marketing Manager
XCell-Center GmbH
 

barbara

Pioneer Founding member
Just to set the record straight, I did not give you access to the forum. I haven't heard from you in well over a year in fact. Our administrator screens prospective members and we do like to include company representatives, doctors and other professionals. However, this does not mean we allow posts promoting companies except in the promotional forum where press releases, etc. are allowed. Since there is interest in this thread concerning X-cell's treatment for CP, I will leave it as is as long as members understand that we do not endorse any company or doctor or treatment on this forum. It is Buyer Beware as always.

I would like to see some of your successes become members Jay. It is a lot more "from the heart" so to speak when a patient or caretaker actually becomes a member and can relate what they went through. Please encourage them to join us as we hear very little (in fact almost nothing) from anyone that went to X-cell.

Is X-cell planning on any clinical trials? Will there be any peer reviewed published papers in the near future to back up what you have told us? I would be very interested to hear if that is something to look forward to.
Any new therapies in the works?
 

pink7

New member
Xcell

Is it correct that the license to treat patients from the German Authorities expires at the end of 2010 ?
 

hlichten

Super Moderator
...I would like to see some of your successes become members Jay. It is a lot more "from the heart" so to speak when a patient or caretaker actually becomes a member and can relate what they went through. Please encourage them to join us as we hear very little (in fact almost nothing) from anyone that went to X-cell...
Just make darned sure that none of those people who join here and post their feedback about XCell-Center are (as Jay described them) "parents who kindly volunteer their time talking to parents who are considering taking their child to Germany for treatment".

I wouldn't trust those people for one moment, because they sound like folks who are on the payroll to me!!

That's the same damned thing that Theravitae had, a bunch of "happy customers" who want to come home from treatment and tell others what a wonderful experience they had!!! And of course, they are all doing that out of the goodness of their hearts!

As for XCell-Center, you can trust commissioned salespeople like Jay Lenner or someone who has been there for treatment, like me.

Yes, I have been there, and I advise you not to go.

Don't PM me and ask why, because I am not going to answer, just don't go.

I think this thread is closed now.
 
Status
Not open for further replies.
Top