Blood count fluctuations

Julemy

My daughter is 20 month old and is on day +63 post BMT with a 9/10 match. So far all good. Her bloods had minor fluctuations and were approaching normal ranges, just one drop due to a cold virus after which counts recovered. She was having gcsf every 5 days to keep neutrophils above 1. She had gcsf on Sunday but on Tuesday all her blood counts dropped (hb, platelets, wbc). They asked us not to worry as it may just be a fluctuation and to observe the trend. Are these drops normal? I cannot but worry that there's something wrong with her graft. Should we expect these fluctuations? Her chimerism shows 100% donor cells. She also had a bone marrow aspirate recently which was clear.

Rachelj01

Julemy

In my experience fluctuations are normal, if there is an on going downward trend then that would initiate investigation, however ups and downs are normal. I had a dip in my neutrophils to 0.2 after having a healthy neutrophil count only the week before. Due to my medical history and being cautious I had to have a bone marrow aspiration and another set of bloods, well to my annoyance no one thought to wait for the blood results before doing the bone marrow. The blood results came back with a neutrophil count in the healthy zone!
Your patience will be pushed beyond limits you knew you had as its very normal to have a 'bumpy' recovery. Being 100% is a very good result and should give reason for having hope there will be a long term positive outcome.

Dieseldrinker62

Hi again,

I just posted on the other thread but just to reassure you as Rachel has done that blood counts do fluctuate during the early days of transplant, particularly if there is some sort of infection, such as a cough or cold. Try not to get hung up too much on the counts, as long as the trend is generally upwards.

The main thing is that her chimerism is good at 100% donor and her bone marrow aspirate was clear. Those are good signs that things are on the right track and once her infections from the cold virus clear up she should start to be able to continue her recovery.

I was still having transfusions of blood and platelets for some time after my transplant when my counts took a knock.

Fingers crossed she continues her recovery smoothly soon.

All the best,

Steve.

Hayley_Anthony Nolan

Hi
Thank you for posting, I am the lead nurse in patient services.
I just wanted to add that 63 days post transplant is still very early and although your daughter is doing very well it is normal for her counts to fluctuate. Anything like an infection or virus will affect the counts as her immune system is still very young. It must be very hard as her mum to watch and its only natural to worry but her recovery so far seems very normal. The transplant team will watch her counts for a while and I am sure will let you know if they are concerned. 100% chimerism is really positive and her recent BM was clear which is all very encouraging.
In your other thread you mentioned that she has a mild skin rash and is also off her ciclosporin, the skin rash could be a sign of skin GvHD so make sure you have mentioned this to the doctors. Recovery can be a bit up and down for the first few months, which i know cannot be easy. It will improve but it can take time.

Keep us updated on her progress.

Thanks
Hayley

Julemy

Thanks Hayley. Today her counts dropped again. There has been a change this week and it’s that she’s become positive for adenovirus in her blood. She had already been positive but became negative with antiviral. The strategy now is to continue with the antiviral. They also stopped and replaced septrin. Her skin rash is not gvhd but it looks angry so a dermatologist will look at it on Monday. The fear is that it could be a disease lesion. I think they will decide next week based on her counts whether to have another bone marrow aspirate. Apparently, her chimerism is 91% in T cells but 100% in other strands. We were told it was 100% across the board but the nurse got it wrong. Consultants are obviously cautious and now it’s just a waiting game. Can adenovirus cause counts to drop?

HS17

I Had flu A at New Year and my white cells dropped. I was neutrophenic for about 6 weeks even though I got over flu fairly quickly. The GCSF injections made my white cells counts yo yo which was quite irritating as just as they started to climb they dropped again. Septrin was stopped and I've only just been put back on it. I felt fine in myself once the flu cleared up but it didn't stop me from worrying a lot and also prevented me from going for a curry!

Hayley_Anthony Nolan

Hi

I am sorry that your daughters counts have dropped again but any kind of virus like adenovirus can cause this. Her immune system is still recovering so will be affected quite easily. Also some of the drugs used to treat can affect the counts. Unfortunately in these early few months, it can be very up and down but over time it will improve as she becomes stronger. Her team will keep a very close eye on her and her counts. Again its early for her chimerism to be at 100% and she has not had any GvHD so they will monitor the 91%. It is a waiting game, which must be so hard for you, do you have people that are supporting you too? Its important that you take care of yourself.
Although this is tough for you at the moment there is nothing unusual about any of the side effects that she is experiencing, they are all normal at this stage. I hope everything picks up soon.

BW
Hayley

HS17

I've had two bone marrow biopsies which are both 96% chimerism. Although my doctors would prefer 100% chimerism and are contemplating a donor lymphocyte top up, there's no rush because my chimerism is stable, is not far off 100% and because I have mild GVHD. It's always a worry when you don't have 100% chimerism but the doctors know what they are doing.

Julemy

Hello all, my daughter’s counts have continued to drop. The antiviral has brought the adenovirus under control. At some point CMV became detectable but was negative on subsequent tests. HB seems to be stable at around 80 but platelets are 40 today and neutrophils don’t stay above 1 without regular gcsf. They’ve tested for HLH and today they took samples for antibodies against cells. Her crp is consistently normal. Latest chimerism came as 99% whole blood, 93% in T cell and 100% on B cell and myeloid. I guess they’ll soon do a bone marrow aspirate. The consultants list the tests that she’s going to have but nobody gives us an indication as to whether all this is normal or seen on other patients. I understand they can’t give us 100% reassurance about the cause but is all this unusual? And should we be really worried?

Hayley_Anthony Nolan

Hi
I am sorry that the counts still have not picked up. Having 2 viral infections with adenovirus and CMV along with treatment will affect her very immature immune system. Even when the antivirals stop and the levels for the virus decrease it can still take a while for the immune system to respond. It sounds like the team are being very thorough and I am sure if they were worried they would tell you. The blood counts and chimerism are holding their own and it does sound to me that her immune system has taken a bit of a battering with the transplant and viruses and so it needs a bit longer to recover.

I realise that you will worry, its only natural. Hopefully now the viruses have gone you should see an improvement but unfortunately everything in transplant takes time. She sounds like she is doing well otherwise and that is a positive.

Keep us updated and I hope the counts improve soon.

BW
Hayley

Julemy

Hi all, I thought I’d give you an update. My daughter’s counts continued to drop. Her body temperature also increased and crp went up to 40. They’ve done all sorts of tests and excluded that it’s the adenovirus causing this. They also stopped the septrin. Chimerism is good at 96% T cells and 100% all the rest in marrow and blood. So they exclude graft failure. The marrow and trephine show good cellularity and no signs of relapse in marrow. So what is left for them to suspect is that this is a immune mediated disorder. White cells attacking tje donor cells. They’ve put her on steroids to see if they could slow down the drop in counts and then decide which immunosuppressant give her. Does anyone have any experience with this? Could this be gvhd? She has some mild redness in hands and feet.