Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

Son is a potential match for stem cell donation

68 replies

LumpyandBumps · 24/02/2025 19:53

I don’t have anyone in RL to speak to about this. My son is on a donor register and today received a message to say that he is a possible match for someone who needs a stem cell transplant due to blood cancer.
Does anyone have any experience of stem cell donation?
My son is keen to proceed and I am pleased for him and will support him, but please don’t judge me when I say that I am worried.
Are there risks to the donor? ( he will still go ahead, but I just want to be prepared.)
I am possibly a little paranoid as around 20 months ago my late husband had surgery which had an average success rate of 98%. Sadly he was in the 2%.

OP posts:
Frostynoman · 24/02/2025 21:11

Boymama14 · 24/02/2025 21:02

My 20 month old is being admitted to hospital tomorrow to start chemo for his stem cell transplant. His donor is a 22 year old German man and his cells will be collected by a volunteer and flown over to be received by my baby in two weeks time. Words cannot begin to describe the phenomenal gift that he is giving us. Please, please support your son to go ahead with this outstandingly selfless and life-changing act.

wishing your baby a full recovery xx

Mumofteenandtween · 24/02/2025 21:20

My brother has donated. It was fairly similar to donating blood and felt very safe. (He had a young child when doing it so asked a lot of questions and his partner is medical so had a very good understanding.) The system is very much designed to make it as easy and convenient as possible for the donator.

His recipient was a woman with two small children. She was very ill after the transplant but survived and is now living a normal life. They are semi in touch but not hugely as they were obviously strangers before. (She contacts him once a year on her anniversary of the transplant.)

It is rather nice to know that two young children still have their mummy because of him. And also a little weird to think that if anyone took her blood and my blood then they would think that we are related. But a good weird.

LumpyandBumps · 24/02/2025 21:28

Boymama14 · 24/02/2025 21:02

My 20 month old is being admitted to hospital tomorrow to start chemo for his stem cell transplant. His donor is a 22 year old German man and his cells will be collected by a volunteer and flown over to be received by my baby in two weeks time. Words cannot begin to describe the phenomenal gift that he is giving us. Please, please support your son to go ahead with this outstandingly selfless and life-changing act.

I hope everything goes well for your son. He is so young. It must be such a worrying time for you. I am sending every positive thought your way.

My son will definitely go ahead with the donation if he is a match, and he does have my full support. ( I was just voicing my worries here so that he doesn’t know about them)

OP posts:

Interested in this thread?

Then you might like threads about these subjects:

Comeoutside · 24/02/2025 21:31

Boymama14 · 24/02/2025 21:02

My 20 month old is being admitted to hospital tomorrow to start chemo for his stem cell transplant. His donor is a 22 year old German man and his cells will be collected by a volunteer and flown over to be received by my baby in two weeks time. Words cannot begin to describe the phenomenal gift that he is giving us. Please, please support your son to go ahead with this outstandingly selfless and life-changing act.

@Boymama14 I couldn't read this and not send every best wish and hope for your little one! I hope he makes a full recovery ❤️

Agapornis · 24/02/2025 21:38

I've just signed up for the register, thanks for letting me know it exists.

I used to donate blood but my iron levels are always on the low side. Would have been great if NHS Blood & Transplant had told me about DKMS when I asked them to pause my invitations!

stomachamelon · 24/02/2025 21:51

@LumpyandBumps my son is at uni and was in the same position as your son. He had a phone call, nurses came to the house to talk to him and take bloods and then he never heard anything again.

He was keen to proceed but it was quite a long process and he never heard anything.

He remains on the register though.

I have just read this back and I am not trying to sound negative just that you can get quite far in the procedure and it doesn't go ahead.

I have cancer currently so see the positive on being on the register.

LumpyandBumps · 24/02/2025 22:00

stomachamelon · 24/02/2025 21:51

@LumpyandBumps my son is at uni and was in the same position as your son. He had a phone call, nurses came to the house to talk to him and take bloods and then he never heard anything again.

He was keen to proceed but it was quite a long process and he never heard anything.

He remains on the register though.

I have just read this back and I am not trying to sound negative just that you can get quite far in the procedure and it doesn't go ahead.

I have cancer currently so see the positive on being on the register.

Thank you for sharing your son’s experience.
We both hope it’s goes ahead, but he has been told that he needs to have further tests and a ‘Red box’ will be sent to him that he needs to take to our GP.
If he’s not a match this time he will stay on the register.
My daughter is on the Anthony Nolan register. I am not sure whether they share information, or do different things. She hasn’t matched with anyone so far, which seems to be the case with others I’ve spoken to about this.

I hope all goes well with your own treatment. Take care.

OP posts:
LemonLymanDotCom · 24/02/2025 22:25

I donated stem cells through DKMS in Dec-23. Like your son, I was on the registry and got a phone call saying I was a match in the November. Apparently my recipient needed them quite quickly, so we went through all the stages relatively rapidly. So here's what happened, and please excuse the length.

First of all, there was an in person chat about what it entailed. I was donating via Peripheral blood stem cell (PBSC) donation, so they explained that procedure and then put me through a whole host of health checks to see if I was healthy to donate. I got chest x-rays (ex smoker), full blood panels, honestly a more thorough health check than I have ever had on the NHS! The results showed I was healthy to donate so I was booked in and cleared through to the next stage which is the least fun stage.

So for a few days before you donate you have to inject yourself (ow) with a substance that increases you white blood cell count, your infection fighting bits in your blood, so that when your stem cells lands in its recipient, they're all - let's go fight them cancer cells! (This is my limited understanding of the biology with a double C in GCSE science). Now, let me tell you, this is the worst bit, the injections and how you feel rotten. Cos I'm on the chunkier side of life, I needed more injections. I had to do 3 x injections twice a day for 3 days I think? They're easy enough, they give you pre-loaded syringes, you just have to gather up a handful of belly fat (of which I have ample), shove in and press the syringe pusher. I found pressing a pack of frozen sweetcorn on my belly beforehand numbed the area to make me not notice the needle. This stuff they give you makes you feel horrid - all aches and pains deep down in your bones like you have flu. Now I've figured out this is the sensation of your body gearing up to fight infection. Anyways, it makes you feel like crap but fortunately is only a few days (I figured that this was small fry discomfort and pain in comparison with what my recipient was facing).

Then you're whipped into the hospital (there's only 3 in the country that do this I think and my one was the one in London where the royals occasionally go) and it was proper swish! Private, naturally, you got your own very lovely nurse to look after you and when they bring you lunch, you get a fancy menu to pick a multitude of tasty options from (it was like a fancy spa menu!). As for the procedure, you're in a bed (no need for pJs, no undressing involved) and basically they connect you up to a machine, tubes in both arms, sucks the blood out of one arm, puts it through the machine which centrifuges your donated blood so that the plasma (wherein the stem cells live) separates, then they pump the blood (without the plasma) back into your other arm.

It took me about 4-5 hours all in? And the dreadful infection fighting sensation from the injections dissipated within about an hour into the procedure. Then they check they've got all you need, you sit there and chill and then tootle off having done a good deed while a courier rushes your juices off the Heathrow to fly to the US, or at least mine did.

They pay expenses to cover your travel but I waived those as I live in London anyways. You can bring someone with you - I just brought my laptop and watched some iplayer. The nurse was lovely too, very kind and gentle.

Honestly, it wasn't painful in the slightest. The worst bit was feeling awful from the injections, that or my first commode experience. I didn't feel put at risk in any way, and altogether was very glad to make a positive difference to a stranger's life. It was a privilege.

The other thing is, I have friends and family who have had cancer. If someone's stem cells could have saved them, then I'd want there to be a match out there. And the person that needs mine, they have friends and family who also want a strangers juices to match. So for there to be someone for MY friends and family, I have to be that someone for someone else. It's a numbers game isn't it? With a side dose of be the change you want to see in the world.

Now, I don't know who my recipient was, I was only allowed a small bit of information about her - US based, aged 40-60, and a woman. But we have exchanged anonymised emails via DKMS and she's now survived 2 christmases she wasn't sure she'd ever get to see. So I consider that a win, and one of the best presents I could ever give.

I can understand concerns for your son's health, but they won't let him donate if he is unhealthy himself. I reckon, support him through it, and be aware he'll feel like he has manflu for those injection days, so maybe make him a hamper pack of things he likes when he's feeling ill. His favourite soup, some paracetamol, chocolate and perhaps a bag of frozen sweetcorn for the injection site!

And well done your son, g'wan lad. You can do it.... and the lunch is good too.

OK, longest post I've ever written on Mumsnet now complete.

Disneyvillain · 24/02/2025 22:34

@LumpyandBumps I recently donated both stem cells and T cells to my sibling who had leukaemia. The cells were taken via a centrifuge machine - I was hooked up for 6 hours each day for two days. The drug I had to take for a few days beforehand made me feel sick and achey, but that doesn’t happen to everyone. Afterwards I needed a potassium supplement, but apart from that my body soon recovered and I’m in my fifties. I was very well looked after throughout the whole process.

LumpyandBumps · 24/02/2025 22:37

LemonLymanDotCom · 24/02/2025 22:25

I donated stem cells through DKMS in Dec-23. Like your son, I was on the registry and got a phone call saying I was a match in the November. Apparently my recipient needed them quite quickly, so we went through all the stages relatively rapidly. So here's what happened, and please excuse the length.

First of all, there was an in person chat about what it entailed. I was donating via Peripheral blood stem cell (PBSC) donation, so they explained that procedure and then put me through a whole host of health checks to see if I was healthy to donate. I got chest x-rays (ex smoker), full blood panels, honestly a more thorough health check than I have ever had on the NHS! The results showed I was healthy to donate so I was booked in and cleared through to the next stage which is the least fun stage.

So for a few days before you donate you have to inject yourself (ow) with a substance that increases you white blood cell count, your infection fighting bits in your blood, so that when your stem cells lands in its recipient, they're all - let's go fight them cancer cells! (This is my limited understanding of the biology with a double C in GCSE science). Now, let me tell you, this is the worst bit, the injections and how you feel rotten. Cos I'm on the chunkier side of life, I needed more injections. I had to do 3 x injections twice a day for 3 days I think? They're easy enough, they give you pre-loaded syringes, you just have to gather up a handful of belly fat (of which I have ample), shove in and press the syringe pusher. I found pressing a pack of frozen sweetcorn on my belly beforehand numbed the area to make me not notice the needle. This stuff they give you makes you feel horrid - all aches and pains deep down in your bones like you have flu. Now I've figured out this is the sensation of your body gearing up to fight infection. Anyways, it makes you feel like crap but fortunately is only a few days (I figured that this was small fry discomfort and pain in comparison with what my recipient was facing).

Then you're whipped into the hospital (there's only 3 in the country that do this I think and my one was the one in London where the royals occasionally go) and it was proper swish! Private, naturally, you got your own very lovely nurse to look after you and when they bring you lunch, you get a fancy menu to pick a multitude of tasty options from (it was like a fancy spa menu!). As for the procedure, you're in a bed (no need for pJs, no undressing involved) and basically they connect you up to a machine, tubes in both arms, sucks the blood out of one arm, puts it through the machine which centrifuges your donated blood so that the plasma (wherein the stem cells live) separates, then they pump the blood (without the plasma) back into your other arm.

It took me about 4-5 hours all in? And the dreadful infection fighting sensation from the injections dissipated within about an hour into the procedure. Then they check they've got all you need, you sit there and chill and then tootle off having done a good deed while a courier rushes your juices off the Heathrow to fly to the US, or at least mine did.

They pay expenses to cover your travel but I waived those as I live in London anyways. You can bring someone with you - I just brought my laptop and watched some iplayer. The nurse was lovely too, very kind and gentle.

Honestly, it wasn't painful in the slightest. The worst bit was feeling awful from the injections, that or my first commode experience. I didn't feel put at risk in any way, and altogether was very glad to make a positive difference to a stranger's life. It was a privilege.

The other thing is, I have friends and family who have had cancer. If someone's stem cells could have saved them, then I'd want there to be a match out there. And the person that needs mine, they have friends and family who also want a strangers juices to match. So for there to be someone for MY friends and family, I have to be that someone for someone else. It's a numbers game isn't it? With a side dose of be the change you want to see in the world.

Now, I don't know who my recipient was, I was only allowed a small bit of information about her - US based, aged 40-60, and a woman. But we have exchanged anonymised emails via DKMS and she's now survived 2 christmases she wasn't sure she'd ever get to see. So I consider that a win, and one of the best presents I could ever give.

I can understand concerns for your son's health, but they won't let him donate if he is unhealthy himself. I reckon, support him through it, and be aware he'll feel like he has manflu for those injection days, so maybe make him a hamper pack of things he likes when he's feeling ill. His favourite soup, some paracetamol, chocolate and perhaps a bag of frozen sweetcorn for the injection site!

And well done your son, g'wan lad. You can do it.... and the lunch is good too.

OK, longest post I've ever written on Mumsnet now complete.

Thank you so much for this, it is very helpful
Also well done for donating. It’s great to hear a positive outcome.

OP posts:
babbi · 24/02/2025 22:43

@Boymama14
Wishing a full recovery to your baby Xx
Love to you and all the family xx

allthemiddlechildrenoftheworld · 24/02/2025 22:43

@LumpyandBumps I do remember an old neighbour of mine donating bone marrow anonymously. pretty sure she had signed up to the anthony nolan foundation. this was over 40 years ago. she was absolutely fine. they usually take it from the hip. neighbour returned to work just a few weeks later. she was a pe teacher at school. well done to your son for doing this. he will be fine. x

buffyfaithspike · 24/02/2025 22:48

GCSF can be a bit rough (the injections) I've been on them about a decade now

I get a headache and flu symptoms and achy bones, if he's allowed then antihistamines surprisingly can really help

treesandsun · 24/02/2025 22:57

My son donated stem cells just a few months ago. He said it was painless but a bit boring. They send you something to inject yourself with for a week before (if you can't do it yourself someone will do it for you) to boost your stem cells in advance.
He then went to the hospital and was there for the day - they take the blood from one arm - it goes through a machine which takes the stem cells and the blood goes back in the other arm. There is a nurse with them the whole time. He had to go back the next morning as they hadn't got enough. He was fine no problems and drove himself home later.
They subsequently sent tests to check his stem cells had gone back to normal - they had.
It really is life saving and a lot of his friends have since signed up knowing how easy and painless it was.

MumonabikeE5 · 24/02/2025 23:00

I don’t know anything about the procedure, from the donors POV, but I am so thankful that one of my closest friends received one in October.
we are so hopeful that this will mean he overcomes leukaemia, and lives long enough to see his sons become men.

I hope that the fear you are feeling will eventually turn to pride that your son has volunteered to help a stranger fight for their life.

Bored20 · 24/02/2025 23:00

My Son is here today because of 2 complete strangers who gave my son the gift of life. Every year on the anniversary of his transplants we celebrate his “re-birth” we are in regular contact with both donors. Please thank your Son for his selfless act 💙

caringcarer · 24/02/2025 23:09

Boymama14 · 24/02/2025 21:02

My 20 month old is being admitted to hospital tomorrow to start chemo for his stem cell transplant. His donor is a 22 year old German man and his cells will be collected by a volunteer and flown over to be received by my baby in two weeks time. Words cannot begin to describe the phenomenal gift that he is giving us. Please, please support your son to go ahead with this outstandingly selfless and life-changing act.

I hope it goes well for your baby. OP should be so proud of her wonderful DS.

CerealPosterHere · 24/02/2025 23:14

I matched someone. The Anthony Nolan trust sent me a load of blood bottles I had to get filled and post back. I was then told I’d matched that stage but the potential recipient no longer needed a stem cell transplant at that point but they asked me to make sure I informed them immediately of any changes of contact details.

I never heard anything more. I like to think the person recovered spontaneously

Notgivenuphope · 24/02/2025 23:27

Your son is absolutely marvellous. All the best to him and to the person receiving his precious gift.

GloriousBlue · 25/02/2025 00:04

I've just popped onto the Anthony Nolan site to see about becoming a donor and it states they want those aged under 30 as they see more success with these donors.

I had no idea.

EmpressaurusKitty · 25/02/2025 05:47

GloriousBlue · 25/02/2025 00:04

I've just popped onto the Anthony Nolan site to see about becoming a donor and it states they want those aged under 30 as they see more success with these donors.

I had no idea.

That’s why I signed up with DKMS. They go up to 55.

whatwouldyoudoifisangoutofkey · 25/02/2025 05:57

I'm so sorry to read about your husband. No wonder you feel anxious about your son being involved in a medical procedure.
Also sad that you have no one in RL to discuss this with .Flowers

Destiny123 · 25/02/2025 06:35

LumpyandBumps · 24/02/2025 22:00

Thank you for sharing your son’s experience.
We both hope it’s goes ahead, but he has been told that he needs to have further tests and a ‘Red box’ will be sent to him that he needs to take to our GP.
If he’s not a match this time he will stay on the register.
My daughter is on the Anthony Nolan register. I am not sure whether they share information, or do different things. She hasn’t matched with anyone so far, which seems to be the case with others I’ve spoken to about this.

I hope all goes well with your own treatment. Take care.

Theres 2 registers but you can only join Antony Nolan young (I think sub 30) dkms let's you join til I think 50s. But once you're on AN you're on for life even if get older than 30

CaptainFuture · 25/02/2025 06:43

@LumpyandBumps what a wonderful son you have to have signed up to the register.
@Boymama14 sending you and your boy all the very best for today.

LumpyandBumps · 25/02/2025 06:59

whatwouldyoudoifisangoutofkey · 25/02/2025 05:57

I'm so sorry to read about your husband. No wonder you feel anxious about your son being involved in a medical procedure.
Also sad that you have no one in RL to discuss this with .Flowers

Thank you. That’s very kind.

I do have people in real life that I can speak to about most things. It’s just that I feel the need to be outwardly positive about this ( and I genuinely do want him to go ahead), and I didn’t want there to be any risk of him finding out about my concerns if I discussed them with people we both know.

OP posts:
Swipe left for the next trending thread