Persistent Lymphocytosis

General chat
1

Blood Cancer UK Forum

Persistent Lymphocytosis- Possible CLL

Watch and wait

Persistent Lymphocytosis- Possible CLL

Watch and wait

1

/

1

Txurnin

6h

Hi,

I’m new here and wanted to introduce myself.
I’m currently awaiting a diagnosis of persistent lymphoytosis which I have accepted already as Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)). My GP has not, but the numbers and the years those numbers have been elevating can only equate to Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)).

It began in 2018 started 3’700 then 4’700 then reduced to 3’700 in 2020. In 2021 the numbers were in 4’000 and had met 4’600 by March of last year.
I was told this is ok, just reactive and not what would be Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)).

Happy I lived my life and then routine bloods in January 23 showed lymphoytosis of 5’000 feb 5’400 I had an infection so took some antibiotics and by end of feb my count was 4’200 but then in May 4’700 and July 5’500 …

I have seen another GP and they dont seem concerned still. They have said that usually if the pathologist feel its Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)) a blood film is done. But nothing has been done.

Anyway, I voiced my concerns of Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)) and we are to do another blood test and if still elevated we then move to speak to hematologist for next steps.

It is my understanding that a persistent lymphoytosis of 5’000 or above is diagnostic of Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)) and im a bit uneasy that they arent really taking me seriously.

I tried to speak to family but they are flippant and say stop googling there is nothing wrong.

Thats hard, because its not a google thing its a blood result thing over a period of years and its really upsetting to know in black and white something is wrong and have nobody take it seriously.

I had a blood film done last year but I had bells palsy so it came back reactive … That was 7’400 and all my cells wer3 up even red. I dont think that they should base their findings from then on what is going on now.

I’m so lost and confused. I hope its not Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)) but at this point there isnt much else it can be. I am not sick, no symptoms just worrying.

2 Likes
2

Hi @Txurnin I have responded to your other post, take care.

1 Like
3

It is not necessarily Chronic lymphocytic leukaemia (CLL). It depends on the type of cell and its morphology. I had persistent lymphocytosis and, in my case, the pathologist advised that the shape and type of cells were indicative of T-cell Large Granular Lymphocytic Leukaemia and I was diagnosed accordingly.

2 Likes
4

My GP has said it could be anyting really.
He said last years blood film was reactive.

The thing is though, none of the medical team are pushing for tests and its that which is really unsettling. Their cut off is 3’000 but at 5’000 + they arent budging?

I have hopefully got someone to listen now though. We will repeat bloods in August and take it from there.

Thank you for your reply. I don’t know much about T cell but hopefully it is treated for you and that you remain as well as can be. :heart:

1 Like
5

The Heamotologist has done a film and reported

Aytipical / Reactive lymphocytes

continue to monitor and refer if >10 persistently.

Its currently 5500 so…

I dont know what this means in terms of cancer or disorder or infection.

I am going to see my GP tomorrow

1 Like