CLL and low WBC

[GL64]

I am a CLL care support spouse for my wife who has CLL since 2013. My wife’s WBC has always been low since diagnosed: 4 to currently 2.7

Every support group we have attended the CLL peers all have high WBC...thousand counts. Just saw one post of 80000 WBC

Confused. Any insight ? Am I interpreting the CBC report wrong or different wbc with ddifferent CLL

Thank. Excited to find this community

[Cllcanada Top Poster CURE Hero]

Welcome from Canada🇨🇦

The important count in CLL is the absolute lymphocyte count [ALC] , it can be found under 'DIFFERENTIALS' on the blood test report. Lymph# or ABS LYMPH, etc.. not percentages.

Sounds like your wife is more SLL than CLL. They are the same cancer, but SLL has normalish blood counts, for often years... CLL tend to have a rise in blood lymphocytes over years. SLL is the lymphoma version, CLL is the leukemic version, since it is seen in the blood... both are a subtype of NHL.

This is something to discuss with your wife's haematologist.

I recently had an absolute lymphocyte count [ALC] of 420,000 and that is not a typo... so we are all different and it varies a great deal.

Hope

~chris

[Newdawn Administrator]

Welcome GL64. I must be honest and say I’ve yet to hear of someone with CLL with a WBC of 2.7 to 4 (pre-treatment) unless there’s some confusion over the reporting of the lab results. More importantly, do you know what her Absolute Lymphocyte Count (ALC) is and has she had a confirmatory Flow Cytometry test?

‘4,000 and 11,000 per microliter of blood is a normal level of WBC and a blood test that shows a WBC count of less than 4,000 per microliter (some labs say less than 4,500) could mean your body may not be able to fight infection the way it should. A low number is sometimes called leukopenia.’

This isn’t a usual presentation of CLL where there’s an increase in the WBC and lymphocyte count (be sure to look at absolutes not percentages). Over a 5 year period its unusual to see no increase in the white blood count with CLL due to the very nature of the disease and proliferation of ineffective lymphocytes.

Does your wife have any other symptoms (like swollen nodes and spleen) suggestive more of SLL as Chris says and have you any idea how her other lab results are looking?

I was diagnosed in 2012 and my WBC is now near 130 (130,000).

What does her haematologist say about this? Importantly how is your wife feeling.

Best wishes,

Newdawn

[GL64 in reply to Newdawn]

Thanks for sharing. My wife feels good. Works out -yoga three times a week. But last visit for pet scan results showed lymph nodes increasing and the node near liver portal could cause blockage if it continue to grow so treatment encouraged

My wife is managing holistic as much as possible looking at doing FISH test again to confirm nothing changed

Doc wants rutxim and Bendamustin treatment cycles

Thanks for input on wbc. As explained to us she has NHL. Small cell. Lymphoma and Lukemia.

I will focus on lypmph#. 86%

Nodes enlarging is our concern now or treatment would not be considered

With you

Greg

[Newdawn Administrator in reply to GL64]

Sounds very much like a SLL presentation Greg where the disease burden is found in the tissues and nodes rather than the peripheral blood. Both CLL and SLL are classed as a Non Hodgkin Lymphoma and are treated similarly.

Good to hear she is well and is being carefully monitored. As with all nodal enlargements, having one potentially blocking a vital organ usually necessitates treatment.

Make sure you have the best haematological advice you can get to decide the most appropriate treatment options.

Best wishes to you both,

Newdawn

[Cllcanada Top Poster CURE Hero in reply to GL64]

Small lymphocytic lymphoma (SLL) is a cancer that affects a type of white blood cell called a "lymphocyte," which helps your body fight infection.

You may hear your doctor refer to SLL as a "non-Hodgkin's lymphoma," which is a group of cancers that affect lymphocytes.

FISH test is essential as well as IGHV gene mutation test... before any treatment discussions. Also a second opinion is recommended, since many doctors have a poor knowledge of CLL/SLL and there are often, other news treatments, but it is country specific...

If you mention your location perhaps other members can suggest knowledgeable CLL doctors...

~chris

[GL64 in reply to Cllcanada]

Thanks Chris

In Florida-we are happy with primary oncologist and have 2nd opinion oncologist at Moffit.

The WBC has been different from most CLL patients but as you know it is about the immune system -making it as strong as possible and new normal as you journey with disease and treatment impact to body

Thanks

Will be asking more questions on ighv.

Greg

[Cllcanada Top Poster CURE Hero in reply to GL64]

I'm not a big fan of onologists, might look at a Moffitt hemaetologist, Dr. Javier Pinilla-Ibarz comes to mind in CLL excellence circles...

~chris

[GL64 in reply to Cllcanada]

He is our 2nd opinion

Thanks