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So, I am going to be a stem cell donor...

(49 Posts)
LinesThatICouldntChange Tue 17-Jun-14 21:44:03

My brother was diagnosed with lymphoblastic lymphoma recently. He is lined up for a stem cell transplant; I had a blood test a few weeks ago to see if I am a match... Well I've had an email through and I'm a full match! I feel excited but a little scared. Is there anyone who's been involved in a stem cell transplant (either as donor or recipient) who I can bounce any questions off?
I've no idea about time scales yet; my brother is currently undergoing his second round of chemo.
Feels a bit unreal... I guess this is potentially curative so it's incredibly humbling to know that just by some flukey permutation of proteins in my blood, I might be part of this.

booksandchoc Wed 18-Jun-14 10:44:00

Hi lines, that's great news that you are a match. My DH was a donor for his sister a few years ago so I can maybe help.x

LinesThatICouldntChange Wed 18-Jun-14 13:47:54

Thanks for replying.

From what I've read about the procedure, the actual donation is quite straightforward and similar to donating blood, which I've done in the past. However I gather the donor needs 5 or 6 daily injections in the run up, to stimulate stem cell growth and that these can create flu like symptoms. Did your DH suffer any side effects? Did he have the procedures done locally or does the actual donation take place in the recipient's hospital? Also, was one donation enough? From what I've read, not enough stem cells are harvested first time so sometimes it needs a repeat donation. Does the whole procedure of the stimulating injections start again, or is it just the actual donation? I guess one concern is that as my brother is a 6ft bloke and a lot bigger than me, this could be an issue. Or maybe size doesn't matter!

LinesThatICouldntChange Sat 21-Jun-14 08:50:34

Still haven't heard anything about time scales. I know I'll need a medical, chest x ray and a further blood test to check I haven't caught anything nasty since the original matching tests. Has anyone else had experience as either donor or recipient? How long from finding a match until things spring into action?

blondepip Sat 21-Jun-14 18:01:18

Hi, I had an allograft 9 months ago. My brother was my donor. The process for him went something like a few appointments at the hospital with bloods taken to check for various virus' etc and take consent. Then 5 days (I think) of GCSF injections, these are a prefilled injection with small needle which you can give yourself in the stomach or a district nurse can do. The side effects are it can make you feel fluey, I had them in my treatment and at worst it felt like very early labour pains, paracetamol or ibuprofen help. Then the donation is kind of like giving blood, they put needles in the crook of each arm and pull blood out of one, centrifuge it and put it back in the other arm, this takes a few hours. My brother donated so much that I have spare cells in store somewhere in case I need DLI's which they sometimes give at a later date if you don't become 100% donor or relapse. Any other questions do ask??

LinesThatICouldntChange Sat 21-Jun-14 20:47:03

Thanks for replying; it's really helpful. No doubt I'll have more questions as time goes on. Just waiting to hear more from the Transplant coordinator and hopefully to get an idea of when things may happen.

blondepip Tue 24-Jun-14 00:08:29

Oh just read your bit further up about timescales, it will all centre around when your brother is ready for transplant. I was originally due to have mine April 2013, I needed more treatment and was ready in September 2013, would have been a week earlier but my brother was on holiday. They transplant with fresh cells not frozen so they will coordinate with your brothers conditioning and you donate within 48 hours of their needing them I think!?

LinesThatICouldntChange Wed 25-Jun-14 20:43:17

Thanks blondepip. I've heard back from the transplant coordinator and they're looking at some time in August. I've a feeling I may be posting more questions to you as the time draws nearer. It's a strange feeling.. I can go for days without thinking about it and then it hits me that I'll be subjecting myself to medical procedures while I'm perfectly healthy... Obviously with very good reason but it still feels strange

LinesThatICouldntChange Wed 25-Jun-14 21:10:00

One immediate question blondespip: my email from
The transplant coordinator gives 3 consecutive dates in August to keep free, plus one day a week before that to start the stem cell boosting meds. Any idea why 3 days?

LinesThatICouldntChange Wed 09-Jul-14 19:22:34

I have a date for all the preliminary stuff! Chest X-ray, further blood tests (I suppose to check I haven't caught anything nasty since the matching test) and no doubt a lot of form filling. It looks as though the actual donation will be late August. Feels a bit unreal. Will need the daily injections for around 6 days beforehand... Apparently I can inject myself- yikes. A small price to pay for something which potentially is a cure. Could do with some hand holding though. I feel a little bad asking for that when I'm not the one who's sick, but any messages or advice would be gratefully received.

meerschweinchen Tue 15-Jul-14 19:29:40

I don't know anything about this, but just wanted to say I've read your posts and you're doing an amazing thing. It must be strange preparing to go to hospital when you're perfectly healthy,but I suppose you have to remember the reason you're doing it. Your family must be so proud of you and grateful for what you're doing.

Here to hand hold and listen, even though I can't offer any practical advice.

LinesThatICouldntChange Tue 15-Jul-14 20:36:30

Thank you- it means a lot to know there are people out there being so supportive

blondepip Wed 16-Jul-14 00:07:20

Sorry only just seen your questions, you'll start your injections, then they schedule 3 days incase for any reason they need you back after day 1, ie. they need to collect more cells. Mine took 3 days first day wasn't enough, 2nd day the machine didn't like me , 3rd day got enough - that was for my own stem cells they never used in the end!! My brother went day one and was finished by 1pm and they collected 3x they required amount!! It's really different for each person! They will make sure they get what they need as your brothers plan will be arranged around your cell collection. Hth??

LinesThatICouldntChange Thu 17-Jul-14 12:41:09

Thanks for explaining blondepip.

LinesThatICouldntChange Tue 05-Aug-14 08:47:09

Hospital visit for my medical check up today. This really is happening isn't it ....

LinesThatICouldntChange Tue 05-Aug-14 20:45:50

Long day with lots of form filling, more bloods taken, ECG, chest x ray. Plus of course the usual hospital grind of lots of waiting around, searching for a parking space and then paying an exorbitant amount in car park fees!
I just need to keep reminding myself of the reason for all this. And I have to say, the threads on here from biscuitsandbandages, plus others in a similar situation, are very humbling and a real inspiration. What I have to go through seems negligible in comparison

One thing which freaked me out slightly: the consultant explained that a very tiny percentage of donors fail to 'mobilise'; ie: the stem cells which are boosted by the growth injections, don't move into the blood, but stay in the bone marrow. In this scenario, the stem cells need to be extracted from the bone marrow under anaesthetic. Everything is timed so that my brother will have received very high doses of chemo to prepare him for the transplant so he HAS to receive it then. So although this scenario is unlikely, it's scary because it feels as though there would be no choice but to go ahead with surgery.

I have a few weeks 'off' now.. The provisional transplant date has been put back a couple of weeks as my DB needed extra chemo. So, the next appointment will be to pick up my injections ready to boost the stem cells. Watch this space! Really grateful for the support on here- it means a lot

Bugsylugs Tue 05-Aug-14 20:54:56

What a great thug you are doing

Just read your thread - just wanted to say what a fantastic thing you are doing. Hope all goes well for you and your brother!

LinesThatICouldntChange Sat 23-Aug-14 22:05:08

Thank you; everyone's kindness and support on here really helps.

LinesThatICouldntChange Sat 13-Sep-14 13:06:49

Ok, so I've been given new dates, in early October. A mix of relief that it'll be over soon, but I'm scared too. And in the meantime I need more blood tests to check that I haven't contracted any viruses since the last lot... Guess this is just how it is when treatment is postponed.

I've been following BiscuitsandBandages thread though, and it just puts it all into perspective. What the donor goes through seems nothing in comparison to the recipient; I keep reminding myself how fortunate it is that by some lucky configuration of proteins on my blood cells, I'm able to offer something which could be a cure

LinesThatICouldntChange Tue 23-Sep-14 22:04:06

I've had the official letter now. It all seems rather oddly impersonal: 'we are grateful for your help in the procurement of the stem cells necessary for your brother's treatment'.... No mention that they are MY stem cells, or that I'm being poked and prodded with needles. Whinge whinge moan moan... I know I'm being self indulgent and this is a really teeny tiny price to pay. Just felt a bit odd seeing it in black and white. Yet another blood test today, because the date has been put back several times, I need new tests to check I haven't caught any nasties since the last lot... But it really is happening very soon. The dates are official. Won't it just be totally fantastic if this is a cure for my db?

You are doing a fabulous thing thanks

You are allowed to be a tiny bit self-indulgent; it is entirely understandably that you need a bit of looking after as well in this process.
Ignore the official letters - impersonal standard phrases being traipsed out will always seem cold.

I have no real experience of stem cell donations, but wish you and your DB all the best luck in the world when the day comes.

AnguaResurgam Tue 23-Sep-14 22:14:43

Sod the officialese.

What you are ready to do is amazing.

QOD Tue 23-Sep-14 22:30:59

What an amazing thing to do, keep us posted!

Yes, disregard the official letter! They sort of have to say something, however lame! You are doing something so truly amazing. My DBs are still so fed up that they can't donate for me - in an odd way, they'd say you were lucky. I don't mean to put your feelings down by saying that. It must be odd. They are your cells, of course. But be very proud of what you're doing with them.

Sorry if I'm not v coherent - having those odd waking moments.

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