[MikeTallParticipant]

Hi peoples, we need to use EVERY possible avenue to find Stem Cell donors!
Maureen Lipman, if you read this, I need you to do a television appeal to help those trying to find Stem Cells for Allo transplant. Ok, so a fellow Myeloma suffering friend who has no siblings and is at a point where drugs are holding off the inevitable,needs a donor to come forward. But the bigger picture is that this gets so little publicity and there are so many needing help, with what is actually(from experience) an absolutely painless procedure.
PLEASE help x.
Mike Gormley.
Diagnosed Feb. 2010.

[eveParticipant]

Hi Mike
In full agreement with you,think its very important for MM people with no siblings,but were do you start,even I do not know the basic and I try to keep myself well informed.
So the people without MM it must not even cross there minds.
Would take Myeloma UK to start information on this one.Regard Eve

[MikeTallParticipant]

Hi Eve, Thanks for your reply. People don't realise how easy this would be to do. All that is needed is for people who are registered to give blood, just request to be put on the british bone marrow register. If giving blood is not their thing, at least spread the word to other friends/ family and colleagues who may feel that they can help.
The actual process of donating Stem Cells is very quick and easy and is totally painless, and I am determined to get this message across. 🙂

[tomParticipant]

Hi Mike

Sorry to read about another one that has run out of optians on the drug front.

Tom

[susan123Participant]

Hi Mike,

Great idea about Maureen Lipman, I do think it needs to be someone high profile to get the word across, another one would be Sir Ian Botham, he does a lot for Leukaemia and blood cancers,

Love Sue xx

[clarabellParticipant]

Hi Mike, I'm on Facebook and Give Blood Scotland have a page that gives updates of where they will be visiting regularly, I'm sure its the same for the UK, perhaps we could ask them to feature this on one of there Facebook posts? It certainly has many members, I am one if them and was'nt aware that this option is available I'm sure there are others who don't either. Just a thought…..Clara

[DaiCroParticipant]

Hi Mike,

During my consultant's meeting yesterday I raised the question of a mini-allo as a possibility for the future… (wanting to know if my age – 57 – would stand against me) and she surprised me by saying that they are being phased out very quickly across the UK and most likely will not form part of the MM treatment planning at all within a year.

I don't know how that will affect stem cell donations in the short term but as for the long term?

I wish you luck in your endeavours,

Dai.

[ellenModerator]

We have been following this thread very closely. Here are a few points the group may find useful.

There are a number of organisations in the UK that hold registries of donors for bone marrow and stem cell transplants. Both the ?Anthony Nolan? organisation (http://www.anthonynolan.org/) and the British Bone Marrow Registry (BBMR, http://www.nhsbt.nhs.uk/bonemarrow/) have details of stem cell, bone marrow and cord blood donors from England, Scotland, North Wales and Northern Ireland. The BBMR is responsible for recruiting, testing and registering blood donors who volunteer to become donors. It is also part of an international network, performing searches around the world to identify suitable donors for patients in need of a donor transplant.

Anyone wishing to donate will need to have growth factor injections to boost their production of stem cells and to encourage the stem cells to move from the bone marrow into the blood, in much the same way as patients having an autologous (patient?s own) stem cell transplant undergo. Similarly, the stem cells are harvested and collected by a procedure called apheresis which involves the blood being filtered to separate the stem cells. These stem cells are then stored frozen until they are required.

Donor (allogeneic) stem cell transplants can be of benefit to some myeloma patients. It is generally only considered for younger and/or fitter patients after the risks and benefits have been assessed for the individual. The most important factor is having a matched donor, usually from a sibling, to reduce the chances of rejection. If a sibling donor is not available, then an unrelated but matched donor can be used – this is where the ?Anthony Nolan? organisation and BBMR come in.

In response to Dai?s comments – in recent years, the outcome of allogeneic stem cell transplants has improved greatly especially with the introduction of mini-allogeneic transplants. Although allogeneic stem cell transplant is not considered a part of routine treatment for myeloma, under the British Society of Bone Marrow and Transplantation guidelines, it remains a clinical option for those eligible for this type of transplant. Therefore, all accredited transplant centres should in theory be able to offer this procedure provided a donor is available.
Several international studies are ongoing to investigate the benefits of allogeneic stem cell transplants either alone or in tandem with autologous stem cell transplants. The latest results do suggest that there may be a survival advantage for those patients for whom it is an option. If anyone is interested in reading the reports of these studies or would like to know more about allogeneic stem cell transplants in general, do let us know by calling the Myeloma Infoline on 0800 980 3332 or by email to askthenurse@myeloma.org.uk

Kind regards

Ellen

[Author]

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