Anyone have any experience of having a stem cell top up because of poor engraftment after day 200?

Moirplace

My 17 year old daughter received a bmt in March this year. Her platelets have never really been over 50. She regularly needs blood transfusions. She has no signs of gvhd. She had to be taken off cyclosporin after day 50 because of a suspected relapse. She is getting a trephine taken this week to look at marrow morphology. Doc mentioned another transplant from the same donor.

beckybram

Hi i have had stem cell top ups (not a second transplant) , if your daughter does need them and it is the same as I had, it is a painless process, you go into day treatment have your bloods checked and if all is ok they send off to the lab for the cells, you then have some pre meds which can make you a bit drowsy and then the cells go in through an cannula it doesn't take long at all about 15 to 20 minutes, you then stay for a few hours afterwards just to make sure you don't have any reactions to the chemicals the cells are kept in. wishing you all the best for the upcoming tests and treatment

greg777

Hi Moirplace,
I am really sorry that you are going through what you are going through. Just wanted to say that I had a similar experience after my transplant. Mine was in Feb last year and at around this time last year, we started planning for a stem cell top up from the same donor as my counts were really struggling. I was told this happens in about 10-15% of cases and that it has largely been proved successful. As it transpired, about two weeks before we were due to go ahead, my counts inexplicably started recovering on their own, so we put the procedure on hold. Over the following few months, they steadily climbed such that I ended up not having it. No-one really knows why they stayed depressed for so long and they eventually started climbing on their own. My consultant put it down to infection overload - when I started receiving immunoglobulins, things started to improve, so maybe worth pursuing if this could be the same for your daughter?
Sorry I can't share an actual experience of top up, but I have been in your position of planning for one. It was explained to me that it was exactly the same as the transplant, but without the intense conditioning. It was a nervous time so I feel for you, but my team were always positive that stem cell top ups were a relatively common thing and something which had a strong chance of sorting things out, so I really hope you find the same, although I really hope your daughter shares the same experience as me and the counts start to come up on their own such that she ends up not needing it.
Greg

Hayley_Anthony Nolan

Hi
I am the specialist nurse in patient services, thank you for posting on the forum, it must be a worrying time for your daughter and your family.

Stem cell top ups can be given in these circumstances and although its doesn't happen very often like Greg has said it does in about 15% of cases. I have worked with patients in your daughters situation and it can be a successful treatment. One of the main aims of the top up will not only be to improve her blood counts but to also induce some GvHD as this reaction can encourage the stem cells to get stronger. If there is also a concern with relapse then GvHd can cause graft versus leukaemia effect (GvL) which means that the reaction also helps fight any residual disease.
Depending on the results of the BM this week will depend on if she needs any treatment prior to the top up. If she doesn't and its a stem cell top up only the treatment that she will need will be very minimal and will not be like her transplant. If she does need more treatment and a second transplant then she will have more of a intense regimen but again it will not be the same as her original transplant. I am sure any of this sounds daunting and scary for all of you but it will not be like starting again. Once you have the results of the BM and a more definitive plan is made you might feel like you have clearer idea of what to expect.

Please keep in touch and feel free to give me a call on 02012848229 if you want to discuss anything.

Best wishes
Hayley

Moirplace

Hey guys thanks for getting back to me. Greg it was very encouraging to read your counts came up on their own and it's reassuring to hear you're doing well now. I know my daughter gets IgG every 5/6 weeks and when last checked chimerism was 100% donor. Bmt/a getting taken tomorrow. Results prob be two weeks going on past experience.
I hope she doesn't need any conditioning treatment before hand as she was very ill and is still suffering after effects just now.
Will keep u guys posted. X

Moirplace

Beckybram that is very reasurring hearing that the top up is as simple as a blood transfusion. Hope hers is this simple because she hates staying in the hospital. Fingers crossed for good results and donor agreeing to give more cells.
Many thanks and best wishes. X

Dieseldrinker62

Hi there, I think the replies you've had already probably give you some reassurance that this is something that happens possibly more than we realise. I've seen quite a few posts on here recently regarding stem cell top ups and second transplants and from what I've read it does seem a relatively straightforward process and is not as arduous a procedure as the transplant your daughter has had so far.

Greg and Becky have had different experiences as a result of low cell counts with Gregs putting themselves right on their own and Beckys needing a jump start from a stem cell top up. I guess the good news from both of those is that they seem to have worked and that Greg and Becky have continued their recovery, just as your daughter should.

It's good that your daughters chimerism is at 100% because it does show that her graft has fully taken, it probably just needs a kick to get those cell counts rising again. Fingers crossed that the results from the biopsy come back normal and she can proceed with a top up to get things moving again.

Please do keep us updated.

All the best,

Steve