Blood work Question for CLL patients

[Mochachino]

What rate of change of WBC and Lymphocytes is concerning for CLL?

My recent blood work went from 18.2 to 24.4 WBC in 6 months and the lymphocytes from 10.6 to 18.2 in the same period of time

I’m currently on watch and wait

[AussieNeil Administrator]

CLL cells are included in our lymphocyte count, which also includes healthy B-cells, Helper and Cytotoxic T cells and Natural Killer cells. Your White Blood Cell count includes a further 4 different white blood cell types, which is why it's best to monitor your Absolute Lymphocyte Count (ALC), not your WBC. It's also important to monitor your neutrophil count to determine your infection risk, particularly when in treatment.

It becomes more important to monitor your lymphocyte doubling time when your ALC is over 30. That's because the ALC under 30 can jump around a fair bit because of changes in all the different lymphocyte types. The trigger for considering starting treatment is a doubling time of under 6 months. Monitor your trend, rather than worrying about your last count of 18.2.

The record high lymphocyte count that I know of is 1,400,000. CLL cells are small (slightly bigger than a red blood cell), not sticky and so rarely cause circulation problems.

Neil

[Mochachino in reply to AussieNeil]

Thanks for your insight Neil. I am speaking to my haematologist next week and will discuss that with her.

[Marchmouse in reply to Mochachino]

Tnhanks for this fundamental question and the two answers. I have been wanting this info for 5 years whilst on W&W even though I know standard genralised metrics. Some specifics heps too as given here.

[humaniquarian]

typical concern is doubling in one year of these counts . looks like your numbers are on the increase and I would ask for blood tests at least monthly as your lymphcyts' are approaching a doubling time of almost 6 months,But they could go down also

[Newdawn Administrator in reply to humaniquarian]

Doubling of lymphocytes is normally only considered significant once our ALC is over 30 humaniquarian and then doubling needs to be in a 6 month rather than a year. I’d see a rise from 10.6 to 18.2 as pretty slow progression over 6 months ago at this low level and mine invariably exceeded this on most occasions but I was rarely seen more than every 3/4 months.

It’s very much about trends and other factors, primarily haemoglobin and platelet levels plus any symptoms both physical and constitutional.

As you say, they could level out or go down but I wouldn’t be too concerned about this increase Mochachino. Still on the ‘nursery slope’ of CLL 😊

Newdawn

[Mochachino in reply to Newdawn]

Much appreciated perspective Newdawn. Happy to hear I’m still on the nursery slope 😀

[Annie1920]

I was told its the speed of the doubling rate that rings alarm bells

[Edalv]

The lymphocytes can you up for many other reasons, that’s why your doctor will want to monitor the lymphocytes count over a period of time. They will probably want to check your counts again in a few months to determine if the trend has changed. W&W is not easy to deal with, but we all have to find ways to control our anxiety… You are probably a long time from needing any form of treatment, best regards…

[larrymarion]

AussieNeil and New Dawn have given you great info about the numbers, so i'm going to add another rule of thumb about cll treatment: Treat the patient, not the numbers. Yes, doubling time is important, but how do you feel? Horrible fatigue? terrible night sweats? A spleen the size of a basketball? Physical symptoms play a huge role in a decision on when to treat. Your age and other factors also are key factors. In my own case, i started chemo when i was 60 years old not because my numbers were bad, but because a lymph gland in my throat had swollen to the point that i couldn't swallow. Another uncomfortable treatment factor is insurance and financial wherewithall. Many of the new novel agent drug treatments are expensive. Before starting on any of them ask your doc to test your insurance company's tolerance for paying those bills. I'm not saying you should delay treatment due to $$$, but you should be aware of all aspects of the treatment decision, not just what your ALC doubling time.

[Mochachino in reply to larrymarion]

Thanks Larrymarion for your reply. Currently I’m asymptomatic which is great. Also as I live in Canada all treatment needed is provided though our national health care system so there is not a financial worry about treatment options when it comes to that decision.

[stevesmith1964]

No idea, never had an abnormal wbc.

[Floorfax]

Reading your worries & seeing a response below regarding different blood count levels to monitor, it can get confusing, for sure! I'm 65, as well, and have had CLL for about 10 years +/-. I have also been in the W & W "grand-stands" with a WBC @ about 18 to 20.

What my oncologist has been more recently concerned about is my RBC, my hemoglobin level, and platelets count. I'm down to a 12.1 on my RBC & going in for more blood work in about 2-3 weeks. If it is still low (I have tended to go up & down with the RBC's over time), he wants me to consider starting some form of treatment - either chemo or ibrutinib, or some similar novel treatment. I haven't mentally gotten that far yet, but am tending to lean AWAY from any form of chemo!

I wouldn't be too concerned about your white levels, unless you are experiencing pains, swollen lymph nodes, a swollen spleen, excessive fatigue, or other symptoms that affect your everyday life. Check your red cells, your hemoglobin levels, platelet count, and keep exercising! Walk every day - 1-2 miles minimum. Keep your circulation going! And don't stress about it!! On a scale of 1-10, CLL is about a 2 in my mind relative to the many other C word options we all could be experiencing!

I, too, am interested in hearing from anyone who has started ibrutinib, or similar therapy. How long have you been on treatment, what changes have you experienced since taking the medication(s), how is your life different, and God knows, what costs have you had to pay? I'd love to gain some working knowledge from someone who has crossed the bridge into treatment land!!

Lots of ?s, but you have a set of interested ears!

Best of luck with your W & W period!