I have been trying to research stem cell treatments for some time only to learn that it seems to only be available in eastern block counries, Asia, & the US of A. Nothing seems to be available in UK. Can someone at the BLF please enlighten me.
IKeith
It is a very experimental treatment. Other countries and some commercial companies operating within countries where there is less regulation are happy to go ahead, even if there are elements of risk and unknown consequences. As with all drugs and treatments, the UK does not go ahead until exhaustive tests and studies have taken place. This takes time and money which is scarce and can be frustrating when we know that we have limited time.
I know someone who paid a great deal of money for stem cell treatment for his MS in Holland. It made no difference and it progressed at the same rate as it would have done in a male of his age with standard UK treatment. As with everything. It is personal choice in the end.
littlepom,
Thanks so much for the info. Your right it is still a new treatment and is in it's infancy, doesn't help when you want it now. Many of the clinics do scam the likely benefits and charge the earth for it, then leave the NHS to try to sort it out.
IKeith
The BLF staff don't work at the weekend so it will probably be better to contact them on Monday. The helpline number is 03000 030 555 and it is open during office hours.
mrsmummy
Thanks for the lead, have spoken to 2No nurses, one of which gave me the address for the stem cell, the other gave me a lot of advice on a cancer drug called Mepolizumab which is useful to sever Asthma suffers but unfortunately not for emphysema.
Thanks for your time & effort.
IKeith
hi .. i am very interested in anything that might help me to breath for longer but unfortunatly my doctors tell me that stem cells do "not" work in any way to improve lungs that are damaged.
there was a member that put on a post about a " new breakthrough" in a hospital in Shanghai China and said she will let us know more when she knows more about it.
i dont think any one should be taken in by all the claims that these clinics are saying that there treatment works on a 101 illnesses as there is no proof that it works on anything other then bone marrow..and that will be in hospitals that specialies in that..not in a clinic on the high road.
i personally wouldnt go anywhere near these clinics unless there was "real evidence" that it works. and even then i would ask my consultant for guidenice.
trust no one other then your doctors..and ofcouse me.
ub40
Thanks for that info, I've already come across scammers mainly in the old eastern block.There are positive signs from the states but the treatment costs a mortgage. I've got a further problem in that most hospitals & clinics need a person to be cancer free for 5 years, I have bone marrow cancer which makes me a bad candidate anyway. Any info you get I would appreciate it if you could pass it on.
IKeith
There are stem cell clinics in Bangkok and even in New Delhi. You can locate them through the internet and contact them
the one in New Delhi do they carry out on IPF any experience anyone
I think if it worked? Cured us ? Then it would be available here in UK....
So don't waste your time or money please!
PollyP
Unfortunately I know there is nothing out there that will cure this but I am still keen to try to improve the current situation even by 15/20%. Good advice I really cannot afford to waste time or money,
IKeith
Good on you and yes we would all love a cure eh?
I stand by super healthy nutrition, meds as prescribed and weights, circuits and walking 🏃🏻♀️
Wishing you well,
Polly P
PolluP
Have done circuits with pulmonary rehab, weights to a limited level and walking the 6minute limit. Walking as a pleasurable past time is not possible unfortunately, 6 minutes is the limit. Thanks for your responses. Keep up the work outs.
IKeith
Okey dokey, are you not able to exercise at all ?
PollyP
I've got an exercise bike on which I can last about 5mins. Then my knee goes out of joint and I wish I hadn't bothered. Walking has become an amble at least I get fresh air. It's not total, but I wish I had more energy.
IKeith
There is no viable stem cell treatments at this time!
The only stem cells that could help are non differentiated stem cells that are only available from embryos or umbilical cords, there is some work being done on regressing cells to a non differentiated state but it is early stages as yet, even then we do not know how to turn non differentiated cells into lung stem cells, or how to stop non differentiated cells from becoming something we don't want for example you don't want stem cells making bone in your lungs !
There is probably much more chance that immuneotherepy or man made antibodies (mab's) which are the current new super drugs approved for cancer, this would not be a cure for copd but could provide some very effective treatments, they are still not available at present but stand a much better chance of being used in our lifetime
gaffers
Very interesting, you seem to have done some background on this. Do you think the alternatives that you make comment on will be available soon.
IKeith
Manufactured antibodies (mab)are very specific, some are already in use for certain conditions,and there is hope that a variety of conditions can be genuinely helped if not cured. there is a post today about Mepolizumab for example, for some conditions mab's have already been approved.
I am not aware of any specific things that may be in the pipe line but the pharmaceutical companies are researching all the time and I feel this field holds more promise to be beneficial to us in our lifetime than stem cells it is true stem cells may eventually cure us but ; " Don't Hold Your Breath " lol
gaffers
Thanks for the pointers, Mepolizumab appears to have been used for Asthma treatment and would seem to have approval as a treatment for this ailment. The GSK website has some useful info but they will not discuss an individuals problem, they refer you always to a healthcare specialist. GSK appear at least to be actively looking for additional drugs to advance COPD treatment in general so one must hope something will come of it in the not too distant future. A cure is unlikely to come about from either stem cell or alternatives but an improvement to ones lot is better than nothing.
Thank you for your help.
IKeith
IKeith, this has just popped up today on the COPD UK Facebook group
Thought you may be interested?
www3.imperial.ac.uk/newsand...
Pp
PollyP
Thanks for that, looks promising will try to make contact to see about possible timing of project. As to exercise have purchased an ab belt see if that can build up lost muscle and loose a bit if weight.
IKeith
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