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How long does it take to search for a matching bone marrow donor?
My Dad has MDS and requires a bone marrow transplant. His Sister has been tested but she's not a match.
Answers
I had MDS diagnosed in early 2012.
My twin sister was tested as a possible donor but like your dad she wasn't a match.
I understand that behind the scenes a search was being made on the Anthony Nolan register as well.
In my case after being told my sister was not a match within a couple of weeks I was told a donor had been found with a perfect match on the register.
You can be sure that Anthony Nolan will be doing their best to find a donor. Hope you find out soon and best wishes.
Peter
My name’s Amy and I work in the patient team at Anthony Nolan. This is a really good question and it’s one that lots of people come to us and ask about.
I thought it would be useful to give you some general information about the donor searching process and what happens behind the scenes, as Peter correctly puts it. This can be quite a lot to take in so please don’t hesitate to get in touch if you have any questions or if there’s something else we can help with.
When a transplant centre contacts Anthony Nolan to search for a suitable unrelated donor, we search the adult donor registers in the UK, international donor registers, and our register of cord blood units. It normally takes us 24 hours to search the UK registers, and a couple of days to search the international registers. We then pass what we’ve found onto the doctor at the transplant centre.
The doctors then get back to us and usually ask for a few of the potential donors to have more testing to confirm that they are a match and who is the best possible donor. The next stage is us contacting the potential donors to do further blood tests (you may hear this called confirmatory typing/CT or VT). If one or more of the donors are in a different country, we will work with the register in that country to arrange the blood tests. We want to make sure that we have found the best possible donor – so we make sure that the recipient and donor’s blood is tested in the same labs, so there is no room for error.
From these results, the doctors will then select the best possible donor. The register in the country that the donor is in (Anthony Nolan in the UK) will then contact the donor and ask them to undergo a full medical examination to ensure that they are fit and healthy to donate. This is the point when the transplant centre will arrange a transplant date.
This process can take a number of weeks and sometimes longer with international donors. Transplant centres vary as to how much information they will give you about the searching process along the way. Often, they will give you information after the donor’s confirmatory typing or medical examination stage. It can be useful to ask them what, how and when you will be told.
Waiting can sometimes be frustrating and worrisome, but this wont be time wasted as you may be having further check-ups, treatment and preparation for transplant. You can watch our guide to bone marrow transplants here:
We wish your dad all the best with his treatment. Please do get in touch if there’s something more we can help with. If you would like, you can email us at patientinfo@anthonynolan.org or call 0303 303 0303 and ask to speak with the patient team.
Best wishes,
Amy
I hope you don't mind me asking but have you now had the transplant? How are things?
Best Wishes
Kelly
Best Wishes
Kelly
Yes I had my transplant in May 2012 with stem cells from an anonymous donor found on the Anthony Nolan Register.
The transplant has been a complete success and I'm so grateful because it was the only cure in my case.
It has been long recovery and there have been several hiccups along the way but they have been dealt with. Only last week I was admitted for a couple of nights with a high temperature and infection but received the right treatment and I am back to normal.
Have a look through the many stories on these pages you may find them helpful because every experience is different. For me recovery was about 12 months but that was what I was told to expect, I don't have the same energy levels but we manage to get away as often as we can, I go walking, I manage the garden and have started doing some decorating, it's just that things take longer! there are many stories of people resuming foreign travel and even fell running.
Anthony Nolan can help with lots of information.On Wednesday they published their first patient enewsletter which includes a feature on my experience following transplant and other helpful information,
you can sign up to the newsletter, you will find the info on the Facebook pages.
We also found it useful to make sure we understood everything the medical team were telling us because there is so much to take in. Please remember everyone's experience is different, I know this from meeting people at the follow up clinics.
Please keep in touch if you have any questions.
best wishes
Peter
I think Amy has probably answered your question and I hope a donor is soon found for your dad.
I had Leukaemia and like your dad, my sister was tested but wasn't a match. Thankfully a donor was found within the three months of chemotherapy I had and I had my transplant in January 2013. Over 18 months later and life has returned more or less to normal for me, except for some continuing treatment for skin GVHD which is manageable.
There are numerous campaigns for people to join the Anthony Nolan register so perhaps you can help by promoting the work that AN do and encourage people to get tested. Hopefully a donor for your dad will be found soon and those that you might encourage to register could be a match for him, or someone else who needs a donor.
Please keep us posted on your dads progress and any news on his transplant and don't hesitate to ask questions here if you need help.
Kind regards,
Steve
Thank you so much for your response.
I am so happy that your transplant was a success. It's really nice to know the outcome of your situation.
I have passed on all this information to my Dad and it's given him some positivity.
Take care
Kelly