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Hello! And my first anxiety moment

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Cellbydate Total Reaction Points: 0
Hi all, I’m new here, I have just had a allogenic sct for aml which first came about in nov 2016 and relapsed in October 17 even though all my marrow was clear, and all markers were favourable etc.

I have never joined a forum as I tend to always focus on the negative posts and can’t see past them which doesn’t help my struggle with anxiety

All has gone well so far with my transplant I was out on day +13 and counts were looking good although on a GCSF boost! I am now day +26. Last week my neutrophils and platelets dropped, neutrophils to 1.6 and platelets from 320 to 255. I’ve felt rough all weekend and had a mild temp, and very tired. Today I went for blood checks and my neutrophils thankfully have gone up to 4 but what is worrying me the most is my platelets have dropped further to 150. The doctors and consultants have said this does not worry them as my bone marrow was loaded with stem cells and then boosted with GCSF and this is all part of it settling down. The specialist nurse also said she was surprised that my platelets were so high last week. But to be honest, I’ve gone past the point of listening to reason, which sounds stupid, but having been told not to worry just before I relapsed, it’s something that I now struggle with.

I know I should listen to my consultant, he is an expert and leading the field in AML but I just can’t seem to stop thinking the worst, that I have already relapsed.

Is it usual for such a big platelet drop after GCSF? My neutrophils went from 22 to 1.6 in a week so I am guessing anything is possible?

Having search the forum the only posts I can find that are similar did not seem to end well, so I am looking for some kind of reassurance I suppose!

Whether I will listen or not is a different story but that’s another problem I have to face on time.


  • greg777 Total Reaction Points: 78
    Hi cellbydate,
    Welcome to the forum, although sorry for the reason you had to post.
    Ah, the dreaded blood cell counts and the awful anxiety that comes with their analysis. I have definitely been there so I know what it feels like, and I also know that how ever many times I say to not worry about them, it is only natural that you will carry on worrying about them. But if it helps, in my experience of being on this forum over nearly two years, I would saying that fluctuating blood counts at your stage post-transplant is entirely normal. There is a chance it could be bad news, but I would say the much, much more likely scenario is that things are just taking time to settle down. I was always told by my consultant that he doesn’t really look at individual counts and instead looks at the trends over weeks and months before deciding if there is anything to worry about. Your counts still seem quite high to me - I was consistently outside the normal range for about 8 month’s post transplant so I would think watch and wait would be the protocol right now. I remember over-analysing each individual count and in hindsight I think it made me more poorly, so if you can switch off the “what ifs” I think it will really help. I think one of the biggest challenges after you have been through the process is living with the uncertainty. I sometimes think that is harder than the physical aspects. So try to be kind to yourself as best you can, continue to focus on what you can control, which is building up strength, introducing balanced foods into the diet and resting, and give yourself and your blood counts some time to get through the major procedure that you have just been through and hopefully you’ll soon find things begin to settle in your mind too.
    Hope this helps in some way.
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 275
    Hi there and welcome to the forum.

    As Greg says you're at that early stage in your transplant where things can and often do fluctuate and we have seen several posts on here with patients concerned about drops in their counts. Your system is in its infancy at this stage and very fragile and often it is something like a minor infection that causes a dip in counts.

    I remember still having blood and platelet transfusions for some months after my transplant to give me a top up due to low counts though generally my Neutrophils maintained a steady climb.

    Hopefully in your case this will be the case too and your counts will start to pick up again. Its perhaps a good sign that the GCSF injections have helped give your Neutrophil count a little boost and hopefully that will continue.

    If things don't pick up as they should there are options open to your medical team to give things a kick start, but hopefully you won't be in that situation and your counts will look after themselves.

    Please keep us updated with how you get along as things progress.

    Best wishes,


  • TonyHTonyH Total Reaction Points: 13
    Just to echo the comments from Greg and Steve, counts can fluctuate a lot in the early days. In my case they rose as expected post transplant but then after an infection / spell of GvHD they fell and despite being back on GCSF I was readmitted to hospital 2 months post transplant with neutrophils of only 0.02. Like Greg says it's hard not to let your mind think the worst at these points. However they recovered on their own and they've been fine since.

    Don't underestimate the impact having some kind of infection can have. I'm just over 2 years post transplant now and before Christmas had a couple of viruses that knocked my Hb down by 15 pts. The doctors ran a number of additional tests but the conclusion in the end was that it was just the infection and everything has since normalised.

    We all understand that it is hard not to obsess about every test result but they can be very misleading.

    Wishing you all the best.

  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 77

    Thanks for posting, I am the lead nurse in patient services, I am sorry that you feel so anxious about your counts. They sound entirely normal to me, its so early after the transplant we wouldn't expect such high platelet counts and this would have been boosted by the GCSF. Your counts are now settling so try not to worry. Its very normal although not very nice to feel tired and rubbish at this stage, its great to be discharged so early but it can be a bit misleading in terms of how you expect to feel. Also having an infection is a normal side effect and this can affect your counts too. Try to focus on keeping yourself well, eating and managing some exercise every day as all of this will help your recovery.

    It is easy for me and other health care professionals to say everything is OK, I realise we do not really know what it feels like to be told bad news but I have looked after many patients in the same situation and nothing you have said worries me. In time you will regain the confidence back in your body.

    Keep us updated


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