Post stem cell transplant

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My mum was diagnosed with ALL in June 2023. She went through chemo and has had her stem cell transplant in November 2023. In December they have done a test to check how much of my mum’s cells are the donor’s and this has come back to 100% the donor’s cells. At the beginning of January this has come down to 91% and at the end of January the percentage has dropped to 45% which is not what we expected or wanted to happen. The consultant has told us she needs to have more of the donor’s cells and also said this is something that happens to the majority of people who have had a stem cell transplant, however, I am worried as I’m thinking the transplant hasn’t worked and as a result she needs to have more cells. Can someone who has experienced this please share your experience?

I would very much appreciate it! 

  • Hi  and a warm welcome to this corner of the Community.

    I am Mike and I help out around our various Blood Cancer groups as well as this group.

    I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different from your mum's I do appreciate the challenges of this journey rather well.

    I have actually had 2 Allo (donour) SCTs..... the first was in June 2014 then the second in Oct 2015...... it's a long story but you can make a cuppa and See my story through the link on the left.

    What your mum is experiencing is indeed normal and happened to me after both my Allo yes it is expected due to your mum's old immune system and here new Stem Cells having a fight........

    This normally happens once her Immunosuppressants (Cyclosporin ?) is started to be reduced. Immunosuppressants are used to keep her own immune system under control to allow the new cells to grow...... but eventually the old and new do have to meet each other and this oftens results in her chimerism (%) going all over the place.

    She will be have what is called a Donor Lymphocyte infusion (DLI). I had 2 after my first Allo and I think 4 after my second.

    It took longer to get a line in my arm than it took for the DLI to go in as the most I ever got at any one time was 30mls.....a tablespoon.

    The infusion helps to wake the 'battle' up and encourages her new cells to take control........ the only thing that may happen after a DLI is GvHD may well raise its head....... but most consultant will say that this is a good thing as it shows the new immune system is fighting it's corner...... I had no GvHD after my first Allo and it failed within 6 months. I had some GvHD after my second Allo but have had no relapse.

    I will also say that it took 23 months after my second Allo SCT for my Whole Blood Lymphoid and Myeloid Lineages to be at 100% Donor.

    Happy to answer any questions ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi,

    thank you so much for getting back to me, it means a lot as I now feel a lot more reassured.

    So the consultant has made a plan to reduce her cyclosporin from 75mg to 50mg and she is to take one pill a day for a week and then stop it completely. She will then have some more stem cells given to her. I see you stated you’ve had multiple doses, does this only happen if the infusion doesn’t work? Or are they given as a precaution? 
    Also she hasn’t had any GVHD symptoms but the consultant said it would be good if she got the mild version as this shows the transplant is working. 
    Im super nervous for her as she has already gone through a lot and I just want her to be healthy again. 

    Many thanks for taking the time to get back to me, it’s really appreciated.

  • Sorry for not getting back to you sooner but l took my wife out for lunch…… life can return to normal.

    Multiple DLIs are often given based on the regular chimerism blood tests (the test that identifies the mix between her stem cells and her donors stem cells)…. So if there is a downward trend this will trigger DLIs….. but if the % is stable they tend to wait to see if the graft does it’s own fighting without help.

    DLI(s) are given to cause an immune response which can push the chimerism back up to an ‘acceptable’ level….. I have talked with many people who never reach a 100% donor graft but get on with life regardless.

    DLI is slightly different from getting Stem Cells as the DLI is a high level of the Donor Lymphocyteand this is all that is needed to weaken up a slow growing graft.

    As I said it took over 23 months for my graft to fully grow……. Just remember that your mum’s immune system is a good (or not) as a new born babies is……. This is not a sprint but truly a marathon. This us taken from my time line notes following my second Allo SCT ((hugs))

    Days + 85 to + 157 skin GvHD so Cyclosporin was continued and slowly reduced

    Day + 100 BMB showed Mixed Chimerism 69%

    Day + 114 DLI (No1)

    Day + 196 Cyclosporin stopped

    Day + 269 BMB showed Mixed Chimerism 48%

    Day + 281 DLI (No2)

    Day + 284 GvHD in bone marrow - weekly blood transfusions for three months

    Day + 325 BMB showed Mixed Chimerism 65%

    Day + 304 DLI (No 3)

    Day + 332….. Classed as in remission and NED (No Evident Disease)......... which I found bizarre as a Chimerism Blood Test still showed Mixed Chimerism but in their eyes my Mixed Chimerism was steady - Some people never reach 100% Donour

    Day + 455 BMB showed Mixed Chimerism 70%

    Day + 697 BMB Showed Whole Blood Lymphoid and Myeloid Lineages are 100% Donor........ 23 months after my second Allo SCT

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge