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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

Low neutraphils

Hello I've chatted on this forum before regarding my husband,John, he is on day +102 he had AML, I'm a terrible worrier and I'm feeling anxious because he has had cmv virus since 12th Dec but we had a call last Friday today to say it's now negative he has stopped taking the valganciclovir but when he had his bloods taken today the neutrophils have dropped again to 1.46 from 2.38 we were hoping they would start to recover as they haven't been this low for a few weeks now we back at hospital on Thursday but I was wondering is there anyone with a similar experience to this?
Tracey

Comments

  • Hi Tracey,
    Thanks for posting on the forum, it is completely understandable that you worry about your husband in his recovery. Unfortunately viral infections like CMV and the drugs used to treat it can have a negative effect on the blood counts, especially when this occurs so early after transplant while the bone marrow is trying to recover from the transplant. Your husband has been on these drugs for a long while now so the effects will last a little while too. Its unlikely that his blood counts would have recovered by now from only stopping the Valganciclovir on Friday, it could take a few weeks to see an improvement. I know you have been very patient already but you will need to be patient for a little bit longer for the bloods to come up. It shouldn't be anything to worry about, his transplant team will keep a close eye on things. Remember its great news that he is now CMV negative.

    Keep us informed of his progress

    Best wishes
    Hayley
  • Thank you Haley for your quick response, it's the third time he has had cmv virus and taken valganciclovir since his transplant and we are told it effects his counts but I appreciate your reassurance, the consultant today didn't seem concerned at all but I just worry. Thank you again
    Tracey
  • Hi Tracey,
    Very understandable for you to worry - you can check out my old posts for evidence that you are not alone in that respect! Whilst I didn't have CMV, I did have adenovirus for a long time post-transplant and it took my counts a long time to recover as a result. It was more than 200 days before my Neutrophils got back above 2. My advice would be to listen closely to what your medical team suggest - they are the experts and will know what is best. Just wanted to let you know that low neutrophils after transplant I think is fairly common. Keep hanging in there.
    All the best,
    Greg
  • Hi Greg, Thank you for your response, I have actually read your old posts and followed your story, you seem to be in a much better place now with your recovery, it's so reassuring to read positive outcomes on this roller coaster journey, thanks for your info on low neutrophils it's all such a worry, we seem to live our life waiting for the next lot of blood counts taken!! You take care and continue with your recovery.
    Kind regards,
    Tracey
  • Hi Tracey,
    Thanks for your post. I am definitely in a better place now than I was a few months ago, so if this gives you and others hope in the darker times, I am really glad about that. I think everyone has an individual experience post-transplant, which is why I think it makes sense to follow the guidance of your husband's medical team closely (as they know the specific circumstances), but in a generic sense, I am proof that you can come out of the other side of some prolonged difficult times. I know there are lots of other examples out there as well. So whilst your husband's situation is going to be unique to him, I just wanted to give you whatever little bit of reassurance I can that I have been in a very similar situation. I remember the feeling of living waiting for blood count (and other) test results. To some extent I still do, although it is definitely better than it was a few months ago, and is not as all-consuming as it once was. I can remember how difficult and frightening a time it was to see counts tumbling and feeling powerless to do anything about it. I am only one individual, but things did eventually get better for me and I hope this gives you some reassurance, or potential for light at the end of the tunnel.
    Very best wishes to you and your husband,
    Greg
    MotherAA
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