PDA

View Full Version : Stem cell treatment



Jade
2nd August 2015, 19:52
Hey everyone,

Just after a bit of advice. My dad has MND and has been reading about stem cell treatment and is hoping to go to China for treatment...

Anyone tried it or know of any pros/cons?

This is the place he's looking at, stemcelltreatmentnow.com/als/?gclid=CPfti6WHi8cCFWnLtAodT7YPKw

Thanks x

Terry
2nd August 2015, 20:13
Hi Jade;

I've always said that it is still is only for research proposes for testing new drugs etc in relation of Mnd.

But on Look East a couple of weeks ago there was a lady from the East of England that went to China for Nine weeks and came back a lot more able. I don't know a lot more and it cost 17,000. Dr Dickie did comment on it from the Mnda on TV as well.

Terry

Steve
2nd August 2015, 21:16
there are a lot of clinics offering these treatments which are unproven and very expensive.

the cells they put in are often a hodge podge of cells that have little or no chance of growing mn's.

the only result will be a hole - in your bank balance.

it is understandable when you get a terrible diagnosis to try and reach out for something. i strongly advise you to do lots of research.

willsandco
2nd August 2015, 21:44
Me too, jade. If it was a wonder treatment, MNDA would be encouraging people to go. I would advise caution. Love. Joycie

Jade
3rd August 2015, 07:25
Thanks guys.

I don't know too much about it myself. Does anyone have any good links I could show my dad? x

Dude
3rd August 2015, 08:21
Hi Jade I tried to post a chinese clinic website on here but moderator took it off as 'unproven treatment', which it is . My speech went a long time ago. I would go to anywhere in the world if there was proof a treatment worked. Will this trip interfere with your wedding plans.
Why doesn't he wait 6-12 months because they are making good progress in stem cell & drugs. Dude x

Steve
3rd August 2015, 09:24
https://www.sciencebasedmedicine.org/be-wary-of-stem-cell-pseudoscience/

Jade
3rd August 2015, 10:52
Hi Jade I tried to post a chinese clinic website on here but moderator took it off as 'unproven treatment', which it is . My speech went a long time ago. I would go to anywhere in the world if there was proof a treatment worked. Will this trip interfere with your wedding plans.
Why doesn't he wait 6-12 months because they are making good progress in stem cell & drugs. Dude x

He won't wait Dude. I guess he knows he's deteriorating so he wants to go now. I think I would if I was in the same boat. He'll try anything, at any cost.
I'm pretty sure he probably thinks he doesn't have that long so wants to try whatever he can now, while he's able to fly and can still speak.

The wedding doesn't matter, we'll obviously it does but we can postpone it. If he can go to China, America or where ever it is he can get the treatment I support him 100%. The wedding won't happen without him so I guess it's just a case of waiting now and seeing if he can get into one of these hospitals.

Surely if a cure is not too far away and stem cell treatment is the way forward it won't do any harm to try? xx

Jade
3rd August 2015, 11:03
https://www.sciencebasedmedicine.org/be-wary-of-stem-cell-pseudoscience/

Thanks Steve, an interesting read, I'll pass it onto my dad x

Steve
3rd August 2015, 11:06
hi jade

there are risks, the cancer risk is probably not a concern given his prognosis. there is always a risk with any invasive surgery.

there is an argument that giving money to a scammer leaves them free to scam more vulnerable people.

i am not sure about your financial circumstances but i would rather leave the money to my loved ones.

best of luck.

Steve
3rd August 2015, 11:07
Thanks Steve, an interesting read, I'll pass it onto my dad x

no worries.

Jade
3rd August 2015, 11:17
hi jade

there are risks, the cancer risk is probably not a concern given his prognosis. there is always a risk with any invasive surgery.

there is an argument that giving money to a scammer leaves them free to scam more vulnerable people.

i am not sure about your financial circumstances but i would rather leave the money to my loved ones.

best of luck.

I guess it's just the "what ifs" ...what if he doesn't go for it and I could make a difference... What if it doesn't work and it's a huge waste of money... I guess at the end of the day it's down to him. I've shared all the info I've found on it with him so I'm sure he'll make the right choice.

Thank you for your help x

Terry
3rd August 2015, 11:24
Hi Jade;

If, as it seems that his set on the treatment, you could contact Mnda connect and ask if they have the address etc,, or would find it out of the place in china where the lady in my area went.

At least they have a track record and might carry out the procedure. Explain the situation in as far as your fathers desperate and will go there any way.

I am trying to find the info via another direction but am doubtful of success.

Love Terry

Jade
3rd August 2015, 11:50
I've spoken to him and after reading the recent links he's also doubtful it'll work... Such a shame.

Back to waiting for a cure x

Dude
3rd August 2015, 12:02
Terry Who is 'This lady', surely she would have made all the papers or was it Mrs B. from Southend scam. I'm not shooting the messenger I just want to convince Jade's Dad it's a scam and a waste of 80.000.. Dude

jasimons60
3rd August 2015, 12:05
Hi Jade, I understand your Dads thoughts as I saw the same document regarding a lady who went to China. The treatment centre I found was the www.beikebiotech.com and I am considering this treatment as I have formed the opinion that I don't have time to wait for the break through treatment which has been FDA approved or a Uk based trial that will offer any form of hope. My condition has become aggressive and my quality of life is getting so much worse as my breathing muscles have weakened so much i find it hard to expand my diaphragm. My legs and arms are so weak now I can only just walk and raising my arms above my head is extremely hard work. I will speak to the MNDA to see if they know of this hospital and its treatment and if any one has any information on how the lady is progressing having had treatment.
Regards
John

Steve
3rd August 2015, 12:14
Terry Who is 'This lady', surely she would have made all the papers or was it Mrs B. from Southend scam. I'm not shooting the messenger I just want to convince Jade's Dad it's a scam and a waste of 80.000.. Dude

'most patients who report improvement say that they had an improvement immediately after the surgery. Of course, this does not allow enough time for any kind of neurological regeneration to have occurred – but is perfect timing for a good old-fashioned placebo effect.'

Steve
3rd August 2015, 12:19
its also worth mentioning that brainstorm and neuralstem have a much more sophisticated method for their treatments. you are not getting the same treatment in the chinese clinics, or jumping the queue in any way.

jasimons60
3rd August 2015, 12:42
Cheers steve, the lady in question was a Carol Bell who was 73 and went to the Wu Stem Cells Medical Centre, and the Doctor was Dr Like Wu. I don't know how she is getting on now and any update would help inform people of how good or bad this treatment is. There are so many out there you just don't know what is best.
Are the ones you mention in USA and have you got any contact details for them.

Jade
3rd August 2015, 13:06
http://www.edp24.co.uk/news/health/chinese_treatment_worth_risking_life_for_says_hell esdon_pensioner_with_motor_neurone_disease_1_41225 44

Steve
3rd August 2015, 13:13
the interesting thing that the article doesn't mention is her mood was incredibly low before the surgery and much improved after. could that account for an element of placebo? we will never know.

Dude
3rd August 2015, 16:25
http://stemcelltreatmentnow.com/als/

This is Beikebiotech.com There is a questionaire to fill in.
I'd like to ask Carol Bell some questions i.e. Where did she get diagnosed. Was it MND.
I guess it's up to the individual to decide .

jasimons60
3rd August 2015, 18:33
Hi Dude, the lady in question was a Mrs Carol Bell who was 73 and went to the Wu Stem Cells Medical Centre, and the Doctor was Dr Like Wu. I am trying to contact Mrs Bell to see how she is now as someone posted the information on Face Book. The centre she went to is I think different to the one I have contacted which is the one shown in your link.
Regards
John

Terry
3rd August 2015, 18:51
Hi there;

Yes it could be a little bit of a placebo affect and perhaps largely due to the intense physio therapy that she had for eightish weeks.

I think that the Mnda Dr Dickie was quite skeptical, but did not rule out that it has worked. He sort of said that there are many different types of Mnd and causes so it might not work on some and also that the effect could well be temporary.

If I thought that it worked and was a cure I would be out there now.

Love Terry

jasimons60
6th August 2015, 13:08
Hi Everyone, I have had an email back from the newspaper who published the article and they have sent this lady an email with my contact details on so hopefully she will respond and let us know how she is getting on. I am content to ask her any questions so if you have some questions to ask and she does get in contact with me let me know and I will see what is said. Unfortunately the view on Stem Cell treatment is still very negative as insufficient data and results have been published to show any benefits in slowing this disease down. It needs some trials but as we all know this takes to long and some of us do not have that long to wait. I am currently struggling with this disease as I am not sleeping very well and every part of my body is now so weak and each day i notice the disease as progressed that bit further.
Regards
John

Dude
6th August 2015, 13:51
Nice one John. Dude

bazil
14th August 2015, 11:19
Hi ,
Some of you have asked how the lady who appeared on Look East at the end of June is doing.
In the the programme, all sorts of claims were made regarding slight improvements and stabilisation of the condition. In reality I and other family members saw no improvement what so ever.

The family member making the claim was at best trying to reassure her mother that the mnd had slightly improved and sabilised. When in reality she was in exactly the same condition as before the trip to China. However, in the worst case scenario, she was trying to cover her own back because the negativity of the possible out come of the trip was brushed under the carpet . Some of you will say that it is good to build up someone's hope. I feel she should have been made aware of the all possible outcomes . She was shielded from this.

They paid 17000 for 2 weeks treatment , plus airfares. They were in the fortunate position of being easily able to afford this. They did not have to take out a loan or extend a mortgage .

Unfortunately, after the false claims made on Look East, she continued to deteriorate and passed away at the beginning of August.

Terry
14th August 2015, 11:46
Hi Bazil;

Thankyou for your difficult post and I am very sorry for your and your families loss. It is a shame that this was covered on TV as it gives the wrong impression.

I did have a very small bit of hope that this might be the start of something for us although in no way did I see it as a cure.

Welcome to the forum and it would be nice to hear more.

Regards Terry

Dude
14th August 2015, 12:08
Thank you Bazil. It was very nice of you to keep us informed . Condolences to you all. Dude xx

jasimons60
14th August 2015, 12:24
Hi Basil, Thank you for taking the time to update us all on the SCT that was undertaken. It will be of significant benefit to others who find themselves in this position of do nothing or try at least something as there is still no treatment to slow or stop this horrible disease.
Please pass on my condolences to the family at this sad time.
Kind Regards
John

bakeit Forum