Hello!

It looks like you're new here. If you want to get involved, click one of these buttons!

Howdy, Stranger!

It looks like you're new here. If you want to get involved, click one of these buttons!

Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Falling blood counts

Hello, my hubby is +42 days out of stem cell transplant for AML, until today his counts have been steadily increasing but today the have dropped his platelets have gone from 119 to 94 his neutrophils have gone from 6.13 to 4.59 and white cell count from 6.34 to 4.72 the hospital said they weren't concerned but I am!!! Is it right that the counts go up and down in the first few weeks? Sorry to sound panicked but I'm a born worrier!!

Comments

  • Hi TJM,

    My name is Hayley and I am the post transplant specialist nurse at Anthony Nolan, thanks for posting on the forum.

    I can understand your concern, we make you obsessed with counts and you are right to assume that once the counts start to go up they should just keep going. Recovery after a transplant is not the same as when you have just chemo, it is very normal for the counts to fluctuate for quite some time after the transplant and this can be because of a couple of things. Infection is one, especially if it is a viral infection as this can cause a drop in counts especially for a recovering immune system. Medications can also do the same, your husband will still be on lots of medications and some of these can affect his counts and if he has had a viral infection the medication used to treat this can also cause his counts to fall. So there can be many factors involved. Even if you husband has not had an infection some of his regular medications like septrin or co-trimoxazole can cause counts to drop.

    To be honest if his team are not concerned then you should be reassured by this, plus having a WBC 6.34 and neutrophils of 6.13 with platelets above 100 so early after transplant is excellent so a dip isn't anything to worry about. Obviously if it continues to fall then they might want to do further tests but currently he still has a good WBC of 4.72 and his platelets are fine so try not to be too concerned.

    I wish him well in his recovery, please keep in touch.

    Best wishes
    Hayley
  • TJMTJM
    edited November 2016
    Thank you Haley for your fast response yes he is on valganciclovir for cmv( think that's what the letters are!) consultant said that's improving slowly but still needs that antibiotic for now, I use this forum to let of steam as I don't really want my husband to see I'm worrying im his carer and try to keep him up beat as much as possible so thanks for letting me worry on here!!
  • Hi TJM,

    Hope your husband is keeping going and the best thing to do is to try and stay positive. Small dips in counts are possible as Hayley says and it's certainly not unusual. It could be down to a minor infection or possibly some of his medication.

    The counts do still sound OK and they will hopefully start to climb again soon. He's making good progress so please try to keep his and your spirits up, and of course come here to let off steam - that's why we're here!

    All the best,

    Steve
  • Thanks Steve for your comments. This week the neutrophils and wcc have dipped again to 1.46 and 1.78!!! The consultant didn't seem concerned and said the vanciclovir he is on for cmv has an effect on the blood count!!! He is getting a bone marrow biopsy next Wednesday and we back at hospital this Thursday for another check up but if the counts drop anymore he will be neutropenic will that mean he will need to be admitted to hospital does anyone know? What a bumpy road this is!!! Tracey.
  • Hi Tracey,
    Definitely best to check with your transplant team but if it helps to let you know you are not alone, my WBC and neutrophil count fell about a similar time post-transplant to your husband and stayed below 2 for over 6 months. I am sure your transplant team will be keeping a very close eye on your husband's counts but please raise any concerns that you have with them so that any necessary action can be taken.
    All the very best,
    Greg
  • Hi Greg, Thanks for your response. Yes we at the hospital tomorrow so we are going to discuss our concerns about the blood count.As I'm Johns carer I put on a positive face but am so thankful for this forum where I can off load my worries. Thanks again,
    Kind regards Tracey.
  • Hi Tracey,

    I hope it all goes well at the hospital today. Just in response to your question about neutropenia, it will depend on the hospitals local practice but it is unlikely they will admit him if he becomes neutropenic. They will keep a close eye on him and if he does spike a temperature then he will have to be admitted but being neutropenic is not an automatic admission.

    Best wishes
    Hayley
  • Hello, just an update we have seen the consultant today who blamed the falling counts on the valganciclovir, the cmv is now showing negative so he has stopped that medication. John ( hubby) was given an injection to boost the white cells, im not sure what that is! Consultant was happy with platelet count and didn't seem worried about wcc and neutrophils!!! John getting bone marrow biopsy next Wednesday he has also had his ciclosporin reduced today!! Thanks to you all for commenting on here it's so nice knowing we not alone on this rocky road!
    Tracey x
  • Hi Tracey and thanks for the update. It sounds like stopping the Valganciclovir, might help and fingers crossed Johns counts will start to climb again. Reducing the Ciclosporin will probably help too. Hopefully the results of his forthcoming bone marrow biopsy will give further reassurances.

    As you've seen from other threads no doubt, you are certainly not alone in going through this and others are experiencing similar concerns but possibly for different reasons. The beauty of this forum is we have all had similar experiences and you won't get better support than that.

    All the best,

    Steve
Sign In or Register to comment.