Son is a potential match for stem cell donation

[LumpyandBumps]

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%.

Sorry I don’t have any real life experience but the Anthony Nolan website would be the place I’d head to for information.
Totally understandable to be nervous but what an amazing thing for your son to do!

Hi! No direct advice no but my brother just had a stem cell transplant as he is fighting Hodgekins Lymphoma stage 4- for the second time. He tried 3 different chemo/ immunotherapy last year and finally in December 18th he got the stem cell transplant (granted he donated to himself). I went with him for the stem cell harvest and he was just hooked up to a machine where they took blood and skimmed the stem cells, and the rest was pumped back into him! He done this over 2 days, about 6 hours per day. He was tired after but no other side effects, but this could have been due to his cancer or treatments. I was amazed that he was even able to donate to himself but the cancer isn’t in his stem cells so he was ok for it. Medicine is amazing and I am so grateful to the nhs. I am also on the donor and DKMS website because of what my brother has been through. It’s amazing your son has decided to be in the register. Hopefully you will find out soon about if he is a match and what is involved going forward but I wish you lots of luck regardless 🍀

Just to add my brother did need injections to boost the stem cells in his blood for a week before the harvest but again this could be because he was already poorly. Hopefully someone comes along with more info soon 🤞🏻

The majority of donations are done through a type of blood donation, no anaesthetics needed if that's what's worrying you.

90% of stem cell donations are done as @MissMarvelMum describes (I think a lot are actually done in a day). So he will just feel like he’s given blood.

for the other 10% I think it’s take from the hip bone, but you are put under for it and so stay a night in hospital.

I think there can be huge misunderstanding about stem cell transplants because people hear how brutal they are. They ARE brutal, but only for the recipient not the donor (and it’s the side effects/recovery that are brutal not the procedure).

you should be so so proud of your son, what he’s doing for another family is indescribable.

Your son is a life saver. You raised a civic minded young man.

I got matched as a potential donor and was invited for further tests, and was warned that these could quite likely rule me out. As it turns out I was pregnant so couldn't donate.

But just to say that this first stage doesn't mean he will actually donate, just that they need further matching

The transplant team will explain exactly what will happen. At any time he can choose not to proceed . He can choose to consent to a blood donation but not bone marrow donation from the hip bone for example.

If he is able to help then he has the potential to save a life .

Oddly enough I had an email from DKMS today explaining the two procedures.

Peripheral blood stem cell (PBSC) donation
This is the most common method, used in about 90% of donations.

At the medical, donors receive medication containing the growth factor G-CSF (a naturally occurring substance that is already in your body), these injections will be taken for four days to increase the number of stem cells in your body.

On the day of donation, blood is drawn from one arm, stem cells are extracted, and the remaining blood is returned into the other arm via a needle. The process takes approximately four hours to complete.

Bone marrow donation
This method is used in approximately 10% of cases and depends on various factors, including the patient’s age and condition.

The in-patient surgical procedure is performed under general anaesthesia. It involves inserting a needle through two small incisions in the pelvic bone to extract liquid marrow containing stem cells. The procedure typically takes between one and two hours.

Afterwards, you may feel tired and experience some lower back ache, similar to the sensation after a heavy workout.

A colleague donated stem cells when he was a student. Every year, he gives an assembly to our sixth formers and is a big advocate for stem cell treatment via the Anthony Nolan Trust.

They'll explain everything as you go along. Quite often they don't actually proceed, my ex and my brother were called up but discounted at the matching stage. Initially they just take a lot of blood tests. Prior to donating you have injections to make the bone marrow produce extra cells. These can make him a bit achey. The actual acquiring of the cells is a bit like dialysis where they put a needle in the arm, take the blood out, separate the cells they want then give the rest of the blood back. Incredibly safe for the donor

What a wonderful young man. And a caring mum.

I'm in awe of your son. What a guy!!!

What an amazing position to be in!

I know someone who had to have the more invasive procedure and it was a day procedure, everyone at the hospital treated them like royalty, was like an altruistic unknown donor. (Many years ago). They have since met the recipient, you have to wait 2 years, and are in contact still.

My DF benefited from a wonderful stem cell donor so a massive ♥️ for your DS.

Thank you so much to everyone who has commented.
I really should have looked this up online before posting.
Harvesting via blood or an incision in his hip sound far less scary than I thought. I was dreading needles in his spine!
My son has been on DKMS since a boy in our village, who is a year younger, sadly died. A stem cell transplant had been planned for him, but unfortunately he didn’t reach a sufficient level of remission go ahead.

Awww your lovely boy ❤️

I'm so sorry about your DH. I'm not surprised that you are wary. How awful for you all. I'm sure that he would have been very proud of your son

My nephew was a match, and he donated through the process like dialysis/ platelet donation. In the days before hand he had a series of injections given to him at home, then went to the centre to donate. He was treated really, really well and says he would do it again in a heartbeat

I donated stem cells a couple of years ago after being on the register for over 20 years. The operation is very unusual these days and most donations are done by a process that is like quite a long blood donation session. The only unusual thing is the self injection with the stimulating factor (injections don't hurt at all). I won't pretend that they had no effect but it was very short lived and dissipated immediately after the donation (I learned that my recipient was quite a lot heavier than me which had a bearing on the number of injections). They are extremely clear and helpful at explaining the whole process. I could not more strongly urge everyone to get on the register. He has the chance to do something of direct and tangible benefit.

As others have already said, it is a blood collection.
However, to boost the stem cells production, drugs are given, and these might cause painin the days prior to the collection and for a few days after. Stem cells originate from the bone marrow. Drugs are given to expand bone marrow and you can feel it. A bit like squeezing bones if you want.
This makes this donation even more amazing.

There's a new documentary on the BBC sounds about a stem cell transplant donor. INFO HERE

Also if you google Stem Cell Transplant Donors Documentary some other suggestions pop, I'm sure I've watched a documentary on the TV about it but I can't remember what it was called.

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.

Look luck to your precious baby and whole family. I have a 20 month old as well and reading this has brought tears to me eyes. Away now to sign up to Anthony Nolan. ❤

The donation methods

Peripheral blood stem cell (PBSC) donation
This is the most common method, used in about 90% of donations.

At the medical, donors receive medication containing the growth factor G-CSF (a naturally occurring substance that is already in your body), these injections will be taken for four days to increase the number of stem cells in your body.

On the day of donation, blood is drawn from one arm, stem cells are extracted, and the remaining blood is returned into the other arm via a needle. The process takes approximately four hours to complete.

He will be taken through the process by an independent clinician, separate from the recipient’s medical team and they are there to ensure his best interests. He will have a medical to ensure he is fit and healthy. After that, as people have said, he will either have a collection via a process called apheresis to collect the circulate stem cells, or through direct bone marrow harvest. The former will require growth factor injections which can cause some bone pain and flu like symptoms. He will have a blood test the morning of the procedure to ensure there are enough stem cells circulating and then be connected to a machine which will remove blood, take out the stem cells, and return his blood. Should only take one day. Bone marrow harvest would involve an GA because they do need to take a bit. Then a thin needle is passed to the back of the pelvis and the marrow is sucked out.

I completely understand your concern, I have had parents say the same when a sibling is donating to a patient. But it is people like your son that means lots of people are alive today and I would be very proud if he was mine. I wish him the best!