[batterboy58Participant]

Hi everyone

Saw this in yesterday Sunday Express and got really excited, need to check out more about how and why it works but it looks good.

http://www.sundayexpress.co.uk/posts/view/340603/Stem-cells-save-cancer-victims

John

[jmsmythParticipant]

Thanks for posting this John. As you say looks hopeful. Be interesting to read more on it.

Good luck for your fund raising. You are doing a terrific job.
Best wishes
Jean

[petesilverParticipant]

Yes I read it with interest but it seems as always it is going to be a long way away before they even start trials.

[tomParticipant]

Great Read John thanks for the link.

Its bloomin sad that even when you are near deaths door you have to beg to try this or that I swear if and when it comes to me they could use bloomin bleach poured down my throat if they "Thought" it could help and bugger the costs 😎

Tom "Onwards and Upwards"

[batterboy58Participant]

Hi

I have done a little research on this and it could be a while away because as with everything these things take time, especially when it comes to the vested interests of the giant pharmaceutical companies,

A lot of what I have read leads me to see that we are talking about placenta's here which at present are routinely disposed of after birth.

So firstly this will need to change to every one being salvaged and harvested as quickly as possible, probably requiring the permission of both parents of the new born baby.

This will have to be licensed and agreed by health authorities and governments throughout the world and provided no one comes up with any sinister alternative use for these harvested cells and any ethical objections can be overcome then it should be do-able.

However it doesn't take a genius to work out that it would need far more than one placenta to provide enough for one transplant.

This doesn't involve dead babies or anything, what we are talking about is every placenta that is now disposed of being used to save lives and restore peoples health and I can't see any objection with that.

Of course it will take time because starting from scratch stem cell registers will need to be established in the same way as bone marrow registers are now, samples will have to be crossmatched and I think I have read that as well as blood types there are several other markers that are important to make each a perfect match.
The only question that I find myself asking then is, Why is there no graft versus host effect and my best guess is that maybe because the placenta's stem cells create a new bone marrow system that is new and unmatured, maybe it is not like an adults marrow system which will aggresively try to destroy the intruder whichever way the GVH effect works.

Hope this is helpful but maybe we can all do a little research on this to find out the answers to any questions that we may have and post the results here for others.

Maybe the most important question of all would be, How long before this becomes the standard first line attempt at a cure or will it always be a last resort.

I am no expert some of what I have typed here is aleady on the internet and some is just logic but I have to say that this is the most potentially exciting article that I have read (and I do get handed newspaper cuttings about once a month most of which I already knew about and some that turn out to be no more exciting that the last new novel treatment) in 12 years of being a Myeloma sufferer. Lets hope no one comes along a throws a bucket of cold water over it.

Best Wishes to All

John Banks

P.S Have a look at our Awareness and Fundraising efforts at

http://www.facebook.com/pages/The-Clock-Fish-Chip-Restaurant/169343…

[jmsmythParticipant]

Hey John couldn't get link to work!!!
Jean

[batterboy58Participant]

Try this one sorry.
John

http://www.facebook.com/pages/The-Clock-Fish-Chip-Restaurant/169343793123093?ref=hl

[MicheleParticipant]

John, I was interested to see your comment about "the vested interests of the giant pharmaceutical companies."

I've often thought that secretly they don't really want cures found for myeloma or any other diseases. Why would they? They're doing very nicely thankyou supplying all our "treatment" drugs………….

[jillsParticipant]

I don't want to be the one with the bucket of cold water but I would just like to add a note of caution here. My son has a congenital disorder which means part of the centre of his brain is missing affecting various organs such as pituitary gland, optic nerves etc meaning lifelong medical intervention is required. Some of the parents of children with the condition have travelled to China or Mexico for what is described to them a stem cell treatment using umbilical cord blood. The costs of the treatment have been enormous – £50,000+ but for many of them the benefits appear to have been minimal and the 'science' behind the treatment is not supported by regular specialists in the US or UK. But as we all know the opportunity for a 'cure' is hard to deny especially when it is your child that is suffering. Unfortunately this can be exploited and it seems to me that a lot more research is needed as John says.
All the best,
Jill

[batterboy58Participant]

The thing about this is that if it is do able it will require huge funding and support and therefore even more reason for us all to do what we can to raise the profile of our disease to the same or better status and funding than Leukaemia in order that we can help to drive this and other treatments and even potential cures.
Our biggest enemy as I have already said earlier will be the vested interest of the pharmceutical giants.
But cures are sometimes found and put in place despite them anyway.
I know one of the things that has always disturbed me is that every time I tell someone that I have Myeloma, invariably there reply is "Oh skin cancer" at which point I go to great lenghts to explain to them what Myeloma is and that "it is the second most common blood cancer but no hardly any one has heard of it blah blah blah" and I admit it gets tiresome to the point of can't be bothered and I might just as well say cancer. But in my own little way I am doing my little bit to spread the word so I keep on doing it.
I would encourage all myeloma sufferers to do the same and stop saying cancer and start saying Myeloma because indvidually we have a small voice but together we can make our selves heard.
Just lately I am organising events back home which started as a little idea for a fundraiser and has grown into a huge series of separate events which is going to raise a huge amount for Myeloma UK.
If any one wants to see what we are up to you can check out the video that I uploaded to Youtube this morning. It is also on our facebook page and Google+.
http://www.youtube.com/watch?v=wsIC_Gi1nl4

It could do with an events team to have organised all this but all there is is me on my first cycle of Revlimid & Dex and feeling all the dex in a negative way but I have turned it into a positive by using its effects to drive me to do all this.
I believe we will achieve my initial goal of spreading the word through Lincolnshire via our local media and things are already happening nationwide and I am full of ideas but my plans for that are at an advanced stage.
Further just from my little platform in the small seaside resort of Mablethorpe, the MMRF (Multiple Myeloma Research Foundation in America has reached out and made a link with me.

I can assure you also that when you decide to do something like this that the backing and support you get from Myeloma UK themselves is nothing short of magnificent.

Best Wishes Everyone
John

[MicheleParticipant]

Yes, I know what you mean about the mix-up with Myeloma and Melanoma.
If I do tell people what I have I always say Myeloma first, then when I get the blank look I usually say "bone marrow cancer". The trouble is I then get the shocked look swiftly followed by one of pity. (I hate that!)

😐

[batterboy58Participant]

Hi Michele

I've never had the pity, I have had "Oh you are brave" to which I say "Theres no brave about it I am not brave I have no choice because as I understand it, if you don't take the medicine you will die pretty quickly."

Even so I think I would take the pity to help raise the awareness but that does depend a lot on what state I was in. I have looked and felt very ill and I've been in a wheelchair and a mobility scooter but equally I have been mobile and able as I am now.

So I do understnd that we are all affected differently and feel and have different symptoms etc.
So if anyonefeels they cannot do this I do understand that not everyone can or will feel as I do.

John

[batterboy58Participant]

Interesting link here from 2010

http://trialx.com/curetalk/2010/12/stem-cell-and-umblical-cord-transplantation-as-treatments-for-multiple-myeloma/

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