What actually is a Stem Cell Top Up!
Hi there - would it be possible for people to share their understanding and / or experience of receiving a stem cell top up?
My husband is day +78. He had a positive start with all blood counts increasing as expected and he was 100% donor. But around day 35 he got RSV closely followed by EBV reactivation and then BK virus. His bloods stopped increasing and his chimerism dropped to 13% so we are now waiting for a ‘stem cell top up’. Luckily his donor is willing and able to give more cells.
We’re taking everything a day at a time but I’m just so worried.
Best Answers
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Hello Kirst
My name is Chelle and i am one of the online community champions, here to support patients and families, along side other online champions. I am also a stem cell transplant recipient
What a journery your husband is on, i empathise with his experience of reaching +78 days and then contracting viruses and EBV reactivation. Its tough on the body and mind to endure that.
I experienced faliure of engraftment and my chimerism never went above a certain level. I can't remember the details as i was so poorly but i did receive a 'stem cell top up'.
I recall at the time it being explained to me as only a particular cell or group of cells did not graft well, and it wasn't a complete 'faliure' of engraftment. Therefore, they had to identify which cells with in the stem cell transplant i was lacking.
In my particular case they had to find a new donor to harvest new stem cells and isolate the specific stem cells i needed to help boost my original transplant.
My day 0 was in january and i had a top up around day 90+. Once i received it, all my numbers started to drastically change and i began to get my strength back.
Im mindful everyones experience is different. This is how it looked for me.
It is great the original donor can donate again for your husband. Are you able to seek further support from your husbands team too? In regards to answering any of your concerns, sometimes multi-layered support can be beneficial when processing new challenges.
Im sure there will be others that can share their experience too.
The stem cell top up for me was an absaloute must and i know various individuals that have also had it. Im now post 3 years and doing very well, ofcourse outcomes vary, and they are all individualised procedures.
Hopefuly your husbands team can identify where the stem cell is lacking cell reproduction, in order to get him the top up soon.
Best wishes
Chelle
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Hi Kirst
Yes the engraftment would have been suppressed/impaired by the viruses. Its a shame and so incredibly frustrating for your husband and your self to have to go through this. It certainly takes its toll physicaly and emotionaly.
Asking questions and seeking others experience is most definitely helpful.
Sadly, the viruses would have 'gobbled up' so to speak the cells but, as long as the viruses have gone or reduced in capacity, a top-up will hopefuly fuel the cells to engraft and propogate sufficiently, to get your husbands levels back up.
Good luck for the 30th, we are all to support you both through the process.
Anthony Nolan patients advice team and nurses always come by here as well and can provide additional insight and support too.
If you feel really overwhelemd please reach out to Anthony Nolan for emotional support
best wishes
Chelle
Answers
Hi Chelle - thanks so much for your reply. And I am so pleased for you and how everything is going, and I’m encouraged for our own experience taking onboard what you say about everyone having different experiences.
Isolating specific cells sounds familiar and is something which has been explained to us. We have a very good team (Bristol) so I will ask more questions.
The team believe poor engraftment may be linked to all the virus’ and that they came so early after his transplant. The top up is happening on the 30th of this month so fingers crossed.
It’s all such a worrying time but the more we understand and hear of others experiences the more settled we feel so, thanks again for sharing!
Kirstine
Yes, the virus’ are all but gone…EBV is now undetectable and BK has gone. There is still a bit of a cough and snotty nose hanging around but nothing like it was. Just need to keep him well until the 30th.
Thanks for the links and offers of continued support - definitely something we will make use of.
K.
Hi Kirstine,
I'm Rachel, Lead Nurse at Anthony Nolan.
Sorry to hear your husband has had such a difficult time following his transplant. I can see that Chelle has already given you a comprehensive answer about the process of a 'top up donation' which is different to a Donor Lymphocyte Infusion (DLI) that you, or others on the forum, may have heard of more commonly. Please do get in touch on the helpline 0303 303 0303 or by email patientinfo@anthonynolan.org if you wish to talk further.
I hope the next few weeks go smoothly.
Rachel