High white blood cell count

[21Bedlam21]

I am on watch and wait. My GP did a blood test and it showed my wbc as 34.5 all it said was abnormal but expected. I’m not sure this is passed on to my Consultant and haven’t been able to talk to my GP. I’ve been feeling unwell and breathless lately and have a CT scan tomorrow on my lungs as they were showing blunting. Is this count meaning I might be near needing treatment?

[AussieNeil Partner Administrator]

This pinned post goes into the triggers for starting treatment healthunlocked.com/cllsuppo... and none of them involve a WBC passing a threshold. It's platelets and haemoglobin falling too low and a lymphocyte doubling time under 6 months, when the lymphocyte has exceeded 30, which are the blood count related triggers. Your lymphocyte count would probably be just around 30, after taking out the other white blood cell types We have some members in watch and wait with Lymphocyte (and hence WBC) counts of several hundred!

Breathlessness can be due to low haemoglobin (anaemia) and feeling unwell due to low neutrophils (fighting off infections). How are those counts going?

Neil

[21Bedlam21 in reply to AussieNeil]

Thank you for your prompt reply.

My GP never discussed my blood test results. I saw these on line in my results. Lymphocyte count 28.5

Platelets 204

[AussieNeil Partner Administrator in reply to 21Bedlam21]

You are welcome to share your results for comments here. Just redact any identifying information and set your post to be only shared with this community, as explained here.

healthunlocked.com/cllsuppo...

Neil

[21Bedlam21 in reply to AussieNeil]

Thank you.

[Curry777]

Lots of love Bedlam, I can't answer your question as I am newly diagnosed and still learning. Hopefully, someone on here will be able to answer your question. I had a CT Scan with contrast on Saturday, I think the scan is always a good idea.

[21Bedlam21 in reply to Curry777]

Thank you. Yes Neil has replied and is very knowledgable. Hope your CT scan results are good, I have mine tomorrow without contrast. 🤞🏻

[Curry777 in reply to 21Bedlam21]

So pleased to hear Neil has replied, we are here to be there for one another. Awaiting CT scan results told they done over 2,000 pictures...Wow! Won't know for 2 weeks. Good luck with your CT scan Tomorrow Bledlam, be thinking of you.

[21Bedlam21 in reply to Curry777]

Thank you, let me know how you get on . I’ll keep you updated. So pleased we are there for each other. 👍🏻

[21Bedlam21 in reply to Curry777]

Had my CT scan, so a two week wait. Off to the Outer Hebrides to see my son Get the results when I get back. Let me know if you get yours👍🏻

[Curry777 in reply to 21Bedlam21]

Enjoy your break away to see your son, I will let you know when I get mine. 👍

[harleyken]

Hi 21bedlam. I'm ken. I have CLL and it's been 10 years since I was diagnosed. This is my third time on treatment and am on zanubrutinib 80 mil 4 times a day my wbc was 300 when I started back on treatment week and a half ago. I get a blood test every week hope this helps you.

[21Bedlam21 in reply to harleyken]

Thank you for your response. I appreciate it. Hope your treatment goes well. Off to Hospital now for my CT scan.

[Vizilo]

Hi Bedlam, as Neil points out you need to find out your neutrophil count in your online results, as well. If this is too low a number, you may be at an increased risk of catching more frequent and more harmful infections - in plain terms, your body may have too few weapons to fight off bacteria and viruses. A low neutrophil count alone (without high WBC) may be enough to start treatment.

Be Well!!

[21Bedlam21 in reply to Vizilo]

Thank you for your help. I will have a look at my blood test results. As this was done by my GP and not my Consultant maybe it’s not a full count blood test. I have my full blood tests in September and see my Consultant in October.

[AussieNeil Partner Administrator in reply to Vizilo]

Good point about the infection risk with a low neutrophil count, particularly given Bedlam's doctors didn't take the time to explain her blood counts. Thankfully, given Bedlam shared in her post that her "wbc as 34.5" and her "Lymphocyte count 28.5" in a reply, Bedlam is very unlikely to be neutropenic. (There's a very healthy count of 6 to be made up by her neutrophils and other non-lymphocyte white blood types.)

While a couple of members have mentioned starting treatment due to neutropenia, it's not a trigger in the iwCLL guidelines for starting treatment. These are way overdue (2018) for an update and with targeted therapies, you might think this could change. However, the NCCN Guidelines Version 3.2024 (updated in March 2024), only lists the following blood test count indications for starting treatment:-

• Progressive thrombocytopenian

• Progressive anemia

• Steroid-refractory autoimmune cytopenias

While it's possible for neutropenia to be due an autoimmune condition, it's much rarer than autoimmune anaemia (AIHA) or thrombocytopenia (ITP).

Neil

[Vizilo in reply to AussieNeil]

Hi Neil, you are correct, but as we and a few others have discussed before, all our cll journeys are heterogeneous. While the trigger guidelines are important (especially for physicians who do not see cll every minute of the day in their practice), it’s still up to the cll specialist to make the decision based on other factors (like severe neutropenia) and his/her personal experience and instinct.

As I reported before, I was on watch and wait for 6+ years and during that time my cll specialist expressed repeated concerns about my severe neutropenia and the potential for nasty and dangerous infections. He believed monthly IVIG would give me some defense but because of the shortage of immunoglobulin worldwide, in Canada, you can only get it by proving you need it eg. by almost dying. For the first 5 years of w & w, I did not catch so much as a cold. Luckily (or unluckily), in year 6, I nearly died with septicaemia and thus was authorized to get IVIG later converted to SCIG.

My neutrophil count rebounded to almost normal for a short time after that hospitalization but in the year after, my neutropenia returned and my cll specialist advised starting Acalabrutinib even though my WBC was still around 25.0 with a doubling time of 5 YEARS He was just too concerned that I might not be around to see the end of a second infection especially with the added burden of COVID patients in the ICU’s

In the first two years on Acalabrutinib nothing much happened, WBC spiked for a short time to low 30’s and then dropped into the mid to high teens and stayed there, but my neutrophil count started to creep up ever so slowly. We (or probably me) started to give up hope that it would ever return to normal but last Christmas my neutrophil count clocked in at 2.25 with a WBC of 6 - best scores in 9 years. In the two visits since my neutrophils have now moved to 3.2.

So, I guess here is a case of “never say never” and an illustration that targeted therapies are not always linear in results and some doctors have expressed some belief the speed at which your numbers worsen may mirror the speed at which you improve.

All my best to you!

[21Bedlam21 in reply to AussieNeil]

Thanks Neil. I am female.

[AussieNeil Partner Administrator in reply to 21Bedlam21]

Apologies; now corrected 🫣

[Vizilo]

In Canada, neutrophil counts are almost automatically taken by GP’s but if not, September sadly is just around the corner.

For your info, the normal neutrophil range is 2.0 to 7.5 (countries and labs vary slightly in their limits). Cll specialists generally start to get concerned when the count drops below 1.0 and really get concerned in the “almost empty” category of 0.0 to 0.5.

Not to overly worry you, neutropenia (a low neutrophil count) will not in itself damage you. Neutrophils are a “good” type of white blood cell that circulates in your blood stream and are the first (but not necessarily the only) line of defense against infection, destroying incoming bacteria. Too few and your body can’t put up much of a defense

Take care!