Anyone else had a cord blood transplant?

SueP

I can't find any references to this on these boards. I received a double cord blood transplant in October 2013 in the Royal Hallamshire Hospital, Sheffield. My non Hodgkin lymphoma kept relapsing so it was decided I needed a donor stem cell transplant. No donor could be found in the western world, so Anthony Nolan sourced two cord blood units, donated by new mothers after childbirth - from Kazakstan and Slovakia, despite me having no Eastern European ancestry.

Compared to a normal donor transplant, I was told:
The benefits and risks were about the same,
I would be in hospital for longer ( true, five and a half weeks),
There could be less graft versus host issues (also true, after the first couple of months, I now just suffer from minor skin rashes)
A disadvantage is that I couldn't receive a further top up of stem cells, as may be possible with a donor transplant.

Three years on, I'm almost back to normal and have just enlisted as an Anthony Nolan community champion. I would be interested to hear from anyone who has received a similar treatment.

Dieseldrinker62

Hi Sue,

One thing I wondered about cord blood transplants is whether they have to be as good a match as a transplant from an adult donor?

I understand that cord blood is very rich in stem cells which are clearly there to help the baby develop, but I guess I've thought of them as more of a 'universal' treatment, almost like O negative blood can be used for transfusions in all patients where cross matching is not possible?

Is that the case or is tissue typing of the cord blood as critical as in an adult patient. If so, how is that done and can the matching be done by a blood sample from the mother before birth?

Sorry for all the questions but I think it might be useful for others to know as they may have had or be facing a similar transplant from cord blood.

Cheers,

Steve

Hayley_Anthony Nolan

Thanks Steve, these are all good questions.

When using cord blood we do not need as good a match. Using adult donors we want a 10/10 or 9/10 HLA match but with cord blood we only look at 8 HLA sites and it can be 5/8, 6/8 or 7/8. This allows us to use cord blood for patients that have a rare tissue type who finding an adult donor would be difficult.

Matching is done after the cord has been donated, so once the cord has been collected blood samples will be taken to test for the tissue typing and then the cord is frozen until it is needed.

I hope this helps

best wishes
Hayley

Dieseldrinker62

Thanks Hayley,

That's useful to know and I'm sure will give hope to those who might have difficulty finding an adult donor. It sounds like between us all we need to spread the word about cord donation being just as important to transplant patients as potential adult donors being on the donor registers.

I know there are currently just 4 centres in the UK that this can be done, but are there any plans to increase that? It's interesting that Sues donors came from Kazakstan and Slovakia so I wonder if this is more widespread in Europe?

Regards,

Steve

SueP

Yes, as Hayley says, I was told that the cord stem cells are still immature so the match doesn't have to be as perfect and gvhd may be less. I was part of a trial but I don't think any results have been published yet.

I would say to anyone who hasn't got a donor match - don't worry, there's lots of positives about a cord blood transplant! They may be more common than people realise, certainly other patients had received similar transplants at my hospital earlier in the year.

As a result of my transplant, several young women I know would have liked to donate their babies' cords but were unable to at the hospital where they gave birth. Yes, there is a cord bank in Astana, capital of Kazakstan (which is actually in Asia), but not in Sheffield. My transplant team had not come across cord units coming form Eastern Europe before and were very relieved when they arrived safely - thanks to Anthony Nolan.

Sue