White blood cell and neutrophils decreasing at three months.

Hi Mark,

remind me, was your SCT an auto or an allo? EDIT;  I’ve just looked back and realise it was an allo! 

Whatever, counts really can go down as well as up, your team are the best ones to advise you. It might just be that your white cells being higher was inflammation/mild infection and now that’s resolved. If you had an allo and your counts are significantly lower, your team might discuss whether a further small amount of lymphocyte infusion might help (a DLI) .

glad your red and platelets are ok though.

hugs xxx

With moomy on this, you will find your counts can go all over the shop for a good number of months.

Day 284 (10 months) post my second SCT my counts nose dived and was on Blood transfusions (with some platelets) every two weeks for three months........then it came ok.

They put this down to GvHD.

Rock and roll journey.

Edit: Just checked, I had a DLI on day 281 so I put a note down in my note book “reaction to DLI - let the battle commence”

Thanks for the reply both.

My consultant rang and has taken me off co-trimoxole ( Septrin ) as this suppresses the white cells . 

I am also on Valganciclovir which is also a supressant, hopefully will be off this soon too.

Mark

Well done getting off the Septrin....... I was on it for a few years.

That’s great, Mark. 

Daughter hated Septrin so instead they did the Penta-inhaling thing once a month till they felt she could go it alone! 

Hugs xxx

Moomy, you made me look back my trusty note book.

26 August 2016 - Day 304 (11 months) - Pentamidine every 4 weeks for 3 months

19 September 2016 Remission and NED (No Evident Disease)

April 2017 (18 months) Stopped Aciclovir and Septrin.

I still have a 'just in case' box of Aciclovir to take at the first signs of Shingles and other problems. With 4 granddaughter this is always a possibility.

I found Pentamidine to be disgusting - like breathing through sweaty socks LOL

Hi Mike,

you cant start shingles as a result of chickenpox being around; but if you have a shingles rash uncovered, the grandkids could then catch chickenpox from your shingles! 

I know, odd; but I checked carefully when m-I-l looked after our two while they were getting over chickenpox just for 3 hours, twice a week! 

Hugs xxx

Yes, moomy you are spot on - it has been an eventful day in so many ways LOL

From the NHS website 

You cannot get shingles from someone with shingles or chickenpox. But you can get chickenpox from someone with shingles if you have not had chickenpox before. When people get chickenpox, the virus remains in the body. It can be reactivated later and cause shingles if someone's immune system is lowered.

Hi Mark,

Just wanted to add my experience that my WBC count was low for about 8 months post transplant. Indeed, I was still needing GCSF injections to boost them after that length of time. I found it quite demoralising to see counts going down, but I was assured that sometimes the body just needs time to sort itself out, and that was the case for me. The path to recovery post-allo is not often flat and can sometimes be a long one.

Here’s hoping that you’ll see some uptick soon.

Greg