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Low platelet count at nearly 2 Years post transplant?

My daughter is now 15 years old. She had chemo treatment for AML 4 years ago then relapsed 2 years later. She was found to have MDS and AML and had a Bone Marrow Transplant so is now nearly 2 years post transplant. She has had EBV and Shingles and is still chronically tired. She has returned to school though and we thought doing well.
Her counts have been good and only minimal GVHD, mainly skin issues under her arms.
She has been requiring venesection as her iron levels are over 700 and on her last FBC her platelets had dropped to 100. They have checked them over the last 4 weeks and we had numbers of 107 then this week 81. Her WCC and Neuts have dropped a little too below normal now but her HB is 124.
She is going to have a bone marrow aspiration to see what is going on next week but I am obviously very scared. Has any one had similar happen to them so long after the transplant?


  • Dear Amber
    Thank you for posting, I am the lead nurse in patient services. I am sorry that you are going through this difficult time. It is a concern that the platelets have dropped but there can be a number of reasons for this. It can take 2 years for the immune system to return to normal after a transplant, your daughter sounds like she has had a bit of a tough time with GvHD and infections and all of this will affect the bone marrow and counts. It can be normal for the counts to fluctuate a bit, even at this stage so try not to worry. The only way to really know the reason is with a BMA so I hope that goes well next week and you get the results quickly.

    I realise that as a mum you are going to worry but I am sure that members of the forum will send you their advice and support.

    Please keep in touch and let us know how your daughter is getting on.

  • Hi Amber and thanks for posting on the forum. I'm one of the online community champions and had a transplant 5 years ago for ALL.

    As Hayley has said it is normal for our blood counts to fluctuate for some time following transplant and my be particularly the case with your daughter due to her GvHD, EBV and Shingles. It sounds like she's had a tough time and is still weak from her treatment.

    I also had skin GvHD for the best part of two years following my transplant and whilst I haven't had the other complications your daughter has it slowed down my recovery. My counts stayed more or less constant and generally good, but at times they dropped due to colds and bugs, which I soon got over.

    I've commented before that as we get our bloods tested so regularly I wonder if we scrutinise them too much. I've wondered if a healthy persons counts were tested with the same frequency whether they might show the same fluctuations.

    The bone marrow aspirate will detect anything unusual going on in her marrow and fingers crossed for her and you that all is normal. It must be a worrying time for you all as a family.

    Please let us know how she gets on and come back for any support you need. There are other parents here who are watching their children go through treatment and will understand better what you are going through.

    All the best,

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