Advice help

[Pav545]

Hi All,

I’m a little worried as I have just had a blood test result and the GP told me it was 9.5.

Last year July it was 8.5 - I don’t know what these numbers mean ?

I’m in the UK - my haematologist has taken me off her list.

Can anyone please refer me to where I can understand these numbers ? Also whether I need to still have a specialist opinion ?

Thank you all so much.

I hope everyone is keeping well in the circumstances!

Love to all!

[AussieNeil Partner Administrator]

It's probably your lymphocyte or white blood cell count. If so, this indicates on the basis of just that measurement, that you are in the early stages of CLL and your CLL is stable. A change of 1.0 in a year is neither here nor there. This is probably why you have been taken off your haematologist's list.

You have the right to your test results. Ask for them and share what the actual result is for better feedback.

Neil

[Pav545 in reply to AussieNeil]

Thank you Aussie Neil /

My numbers are WBC 14.3

And lymphocyte 9.5

[Jm954 Administrator]

Hi Pav545, I hope you're well.

AussieNeil has answered about your numbers but I wanted to address your last comment about a specialist opinion.

It appears from what you have told us that you have very early CLL and have no immediate health concerns apart from wanting to know and understand more about your numbers. Neil is right that this is probably why you have been taken off your haematologist's list but I would say that it's still pretty early days to decide that your CLL is the very indolent type. My personal view is that even for patients such as yourself, even if you are indolent, there is a lot of benefit to seeing a haematologist, even if it's just once a year. It allows you to talk to the Dr or nurse and for you to have things like your immunoglobulins checked.

I think I would ask my GP how familiar they are with CLL and do they feel confident in managing your condition, ordering the right tests, advice about immunisations etc in the absence of specialist support. The trouble with CLL is that it can sometimes be unpredictable and clinically significant events can happen quite quickly.

The haematologists are very busy and I can see why they have discharged you from the clinic but, unless my GP was very familiar with CLL, then I would ask to be referred somewhere else where they will see you annually.

All the best

Jackie

[Pav545 in reply to Jm954]

Hi Jackie,

Thank you for your reply.

And yes you are correct - I don’t have any immediate health issues.

I was just worried that my lymphocyte count had gone up by 1 over the course of the year.

I will see if I can keep my haematologist as she was really nice.

She did say if the count doubles then I will be referred back to her.

My results were lymphocyte 9.5

And WBC 14.3

All the rest normal.

Thank you so much

[Jm954 Administrator in reply to Pav545]

Pav545, at the moment your count is very low and so small changes seem significant but they really aren't. Lots of things can affect it and it can wobble around going up and down. Trends are the most important thing but even then they tend not to take any notice until your count is over 30.

On the other hand, if your Hb or platelets are trending down that would need more monitoring and more frequent blood tests.

Just check that your GP feels confident and you are too. With our help you will know what you need and if you're not sure, well, we are always here.

Jackie

[Pav545 in reply to Jm954]

Your help and everybody’s help here is invaluable.

It’s such an amazing forum.

[alexmcg48 in reply to Pav545]

I suspect they'll ask your GP or Dr to monitor your count & I know from my own haematologist that what they look for is the rate of doubling & with yours only going up by 1 in a year they probably think you can be safely monitored locally.

My CLL was picked up at 7.5 & it's gone up to around 42 in 5 years & with all my others bloods considered to be within their normal range & no other issues like swollen nodes or fatigue I'm being monitored annually.

I'm next due a review in Jan 2021 & I will be interested to see whether my possibly having Covid 19 has had any affect on my CLL.

[Pav545 in reply to alexmcg48]

My goodness - you had COVID. And it seems your doing fine.

You must have been terrified.

I know my kids are so worried about me getting COVID.

But I’m assuming we are all high risk but most likely will be ok if we get COVID?

This watch and wait is not good for anyone’s state of mind !

[cllady01 Former Volunteer in reply to Pav545]

I am not sure it hasn't been said, but I think not---the ALC absolute lymphocyte count is what is watched for doubling after 30. Hope that is helpful.

[alexmcg48 in reply to Pav545]

Can't definitely say I had Covid 19 because I haven't been tested, but I was very poorly for 4 or 5 weeks & I would say it was twice as bad as any other virus infection I've ever had. It didn't though really affect my breathing, so I never got to a point where I needed to be hospitalised, although at the kids insistence I did ring 111 & spoke to a clinician who told me to isolate, take paracetamol, but ring again should my breathing get worse.