Do matched siblings often decide not to donate?

[DelleC]

My husband received a stem cell transplant for MDS a few months ago. His doctor wants to do a donor lymphocyte infusion. The doctor is concerned that relapse risk may be high due to low percentage of donor T cells in his blood and marrow (low T cell chimerism). His sister, who donated the initial stem cells, says she does not want to go through apheresis again.

I feel very grateful for the donation she made, but her new decision has left me numb and hurt. I know it could greatly shorten my husbands life if relapse occurs. We have young children. We are at a critical point in the transplant process.

Does it happen often that matched siblings donors decide not to donate stem cells through apheresis? How do people cope?

[Meri T.]

Delle C,
I am very glad that your husband found a sibling match, his sister willingly donated her stem cells, and that the transplant was initially successful.

I videotaped my brother going through the apheresis process: he was stretched out for 6 hours ! Mind you, he is a healthy strong and a loving brother, but it still took a toll on him. So for your husband's sister's hesitation in going through another apheresis should relapse occur, I understand.

Before going through the process, the transplant team, doctors and coordinator talked to my brother alone through an interpreter to make sure he was on board, donating of his free will, and explaining to him of all the risks. So, my advice is to let the transplant team talk to your sister.

My hematologist says that if I relapse they will not do a donor lymphocyte infusion, because the initial sibling cells didnot "work". They would do a second transplant, this time cord blood.

My prayers for your husband, you and your family. I hope everything will work out well.
Meri

[Heather8773]

My husbands sister choose not to be tested to see if she was a match bc she said she doesn’t like needles. It hurt my feelings.

I have heard of people going with a new donor if relapse happens. Is that an option for y’all?

[Meri T.]

Heather, my 3 siblings were tested with a swab kit (saliva), no needles necessary.

[lisa3112]

Wow that's a bit strange. I know if my sisters could have donated, they would have done it as many times necessary. They were both upset they weren't matches.
Maybe your sister in law needs a meeting with the doctors so she understands the risks to her brother. Good luck.

[Heather8773]

Meri T I think she was afraid she would be a match.. she came to the hospital they pulled her into a room to talk and she opted out.
It all worked out they found a 10/10 match in Germany

[Naive]

When my doctor first mentioned the possible need of a transplant in the future, I asked my brother if he’d be tested for compatibility if necessary. He said no, straight way without even hesitating. He is phobic about hospitals, illness, death, dying and ageing. There was no way he’d even consider it. It is what it is. It’s his right to refuse...I can’t say that I wasn’t disappointed and hurt but I have accepted his decision and our relationship is still good.

[lisa3112]

Its not like its a kidney. I don't understand the hesitation, pretty selfish. So great he found a match in Germany. Where its compulsory to be tested. Go Germany!

[JoMac53]

Lisa, is it also then compulsary to donate stem cells or marrow? Otherwise, why be forced to be tested?

[lisa3112]

Jo, I don't know sorry. But by the number of german donors maybe it is compulsory to donate! Just guessing though. Might google it 😊

[lisa3112]

From what I've read it is NOT compulsory for a german citizen to donate 😊

[Heather8773]

DelleC any change of heart from your sister in law? Any plan B from the Drs?

Yes Lisa so grateful to Germany and their commitment to matching donors!! I’m trying to learn German now as a show of gratitude. So far we haven’t been able to connect w his Donor so we are going to see if the info is still correct.
Honestly Lisa as much as I try to repress it I feel the same way. I would and would have in a heart beat. Even before we were personally affected.
But it’s funny the things people end up having in common w their donors after transplant like taste and such... his sister makes questionable life and health choices it was probably a blessing lol

[lisa3112]

Yeah heather that's right. It may not have worked out with his sister and fate had a better donor in mind! I wish I knew who my donor was! All I know is he is from Melbourne. Let us know how he gets on!

[lisa3112]

Della c, fingers and toes and EVERYTHING crossed your hubby doesn't require DLI. I thinks its in the back of every transplant patients mind. I guess we can't control it, so we should try and move forward. But its hard. Good luck!