Stem Cell Experience

[mandles]

Is there anybody who has been able to try stem cell treatment through trials or via a clinic. I've read some of the threads but it seems to be inconclusive. There's a lot of research that seems to be coming up and it seems to have had good results with other neurological disorders. Thanks

 

[Jennifer51]

I am not sure if I have emailed in the past privatley or not. I am london based, and I have put my name forward to the one neuro in the uk that I know is doing research into stem cell treatment. There are probably more diong research that I have not found yet. From all I have read from worldwide sources and from talking to my exellent neuro in an mnd clinic, it is not a viable treatment YET...I dont think it will be long in coming though .PLEASE HURRY. I for one am willing to give it a try, WHEN a reputable source does it. Not a website charging thousands to go to an obscure place.

 

[mandles]

Hi, yes we have emailed each other. Stem cell seems to be one of those things that is offering a lot of hope at the moment. I think it may be one of the best ways forward but it is a huge area of study. Just wondered what people's experiences of it were and whether any of the neuro's are suggesting it to anyone.

 

[Al]

No reputable Neuro's anywhere in the world are recommending stem cell transplants at this time. That could change any day as there is a lot of research being done. When it is found to work you will find it on the front page of most newspapers in the world. You won't find it on fancy looking websites from a clinic in a crappy country in the 3rd world.

AL.

 

[pattyp]

I agree Al! Going to a 3rd world country for treatment scares the pants off me! I'll wait till it's available here in the USA!

 

[bossman]

my doctor says that they are doing no testing. Up here in Canada and seems to think that the treatment if done could take up two years. I have one of the best ALS doctors in the country and as far as going to third world country and paying 30 grand. I don't think so.

 

[dzerafa]

Xcell centre

Did you ever hear of this clinic? cxell-center.com. They are offering Stem Cell treatment to aLS / MND patients.

 

[rocmg]

i have heard of it but i have not heard of it working. to be honest though, if i thought taking my mum there regularly would buy us some time until some better treatment is approved, i would gladly sell everything and go there every three months or whatever to have it done.

 

[Jennifer51]

Did you ever hear of this clinic? cxell-center.com. They are offering Stem Cell treatment to aLS / MND patients.

I had come across this site before, but took another look. Charges range from euro 7,500=11,500...You can guess which end of the scale als would be. Then look at the statistics of improvement or not. The figures are split almost identically with worse, the same or better and I guess these results are subjective. I would say that these figures are their own, so I dont think they could be really trusted. Then look under the patient stories. Plenty of stories of a lot of illnesses but not one from an als patient. A few other things worry me, firstly, if anyone went for the treatment, I have a strong feeling, from talks with other neuros in the uk, that if you had the treatment, that your regular doctor might not want to treat you any more. Also, if the treatment really has merit, then doctors worldwide would be doing it NOW. It is currently illegal to perform this treatment in the uk, until some time when doctors, hospitals, research institutes get permission to do properly controlled trials. Dont get me wrong, I will be first inline, WHEN this is allowed, and I am sure we would not even have to pay for it. We could easily drive to Germany for this treatment, but things just dont add up at the moment.

 

[cajuntexusa]

Don't give up on your search. But do be careful and research the company thoroughly.

There are facilities in the US that are doing stem cell extraction and are waiting for the FDA approval.

Keep an open mind, do your research and ask the necessary hard questions. If they don't answer questions, then move on. Remember this is new research.

 

[asantiago]

We visited the Xcel Center

We took my mom to the Xcell-Center in Cologne Germany in December of 2008. They were very honest with us that the results from ALS patients have not been as promising as the other diseases they treat. In fact they said the results were not all that promising but they do believe that it has slowed the disease progression for some. If there was a 1 in a million chance it would work, we had to try it. Unfortunately the treatment did not help my mom. She had a very low stem cell count which is common in ALS patients. They prefer to have over a million and she only had somewhere around 200K cells.

Even though it did not help my mom, doesn't mean it has never helped anyone ever. I found the clinic to be a very respectful and professional organization. At this point it is unknown whether it works or not but as you all know this is a disease where there is no other hope so we tried everything in our power. The cost of the treatment was on the low end of the scale mentioned above around 7500 eur which was 10K usd. I'd be happy to answer any questions if anyone has them.

 

[Jennifer51]

We have a friend who lives around the corner to us, with limb onset and going into his fourth year...we were told recently that he is in the process of arranging to go to the same clinic. I asked my neuro what he thought, and he said he knows one of the doctors there and said he was a very good doctor, but he is a bit concerned with how they evaluate their results. He would not say anything else on the subject, other than it is not just a case of putting stem cells in to you, there are a lot more things to consider. So I guess it is still a waiting game for more recognised good results to be produced from anywhere this work is being done. I will watch with interest what happens if this friend does go. But yet again, if some company/ hospital does get good results it will make the headlines and we will all know about it.

 

[asantiago]

I agree with everything you said. We were not expecting miracles but were hoping it would slow mom's progression some. She was diagnosed in November 2008, (first doc visit was July 08), Received the treatment in Dec 08 and died early March 2009. It just progressed so fast for her we would have tried about anything to slow it some, even to give her a few more months would have been worth it.

 

[kmadw]

yes my son of Aunt who is affected with als have spent about 54 thousand dollar by traveling to china to replace his stem cell after they had done it they told him either you will get cured or it will stop it but he didn't see any good

 

[Jennifer51]

I have been in email contact with another member of this forum who lives close to me, her husband was diagnosed in Oct 08, and was progressing fast. They too asked their neuro at a big london hospital if he thought there was any point in going to Xcell, which I understand is a well run and caring clinic. His answer was also a resounding NO. Unfortunately I heard yesterday that her husband died on Sunday...