Changes over two years

[strongmouse]

Hello,

I follow the CLL website as my husband was diagnosed with confirmed B CLL a few years ago (October 2019). He has regular blood tests every four weeks because of the medication he is on for rheumatoid arthritis. He has an appointment soon with the Haematology Consultant. They are moving him from yearly appointments to six monthly.

My husband maps his blood test results and has seen the following changes -

First set are for June 2021 and second set are for June this year 2023:-

WBC - 15.1 - 19

Absolute lymphocytes - 9.6 - 15.1

Percentage lymphocytes - 64% - 79%

Absolute neutrophils - 4.2 - 2.7

Percentage neutrophils - 28% - 14%

Red blood cell count - 4.5 - 5.3

HGB - 13.4 - 17.0

Platelets - 320 - 143

MCV - 95 - 93

NLR - 2.3 - 5.6

He is worried about the changes. I expect he will have a blood test before his appointment, but can you help with interpreting these changes and what he needs to be concerned about or ask about at his appointment?

Many thanks.

[AussieNeil Administrator]

It's good of you to follow this community to assist your husband and you join plenty of other community members who have taken on this role for their significant other. Perhaps he could join too?

Your husband is kind of fortunate in both having CLL and RA and having monthly blood tests, because CLL and RA have some treatment drugs in common (so his RA medication could benefit his CLL management) and monthly testing is fairly regular testing, so any concerning CLL related trends can become quickly apparent and investigated. If either are you are familiar with spreadsheets, here's a ready made template available from the CLL Society that could be used to track your husband's results. cllsociety.org/cll-sll-pati...

With respect to what you've provided, firstly ignore any white blood cell percentages. They can be dangerously misleading with CLL. healthunlocked.com/cllsuppo... Just use the absolute counts, more specifically the neutrophil and lymphocyte counts.

You've only provided results from two months; longer term tracking gives a much more useful picture, as you can see trends (which is what's important when you have CLL) and you also get a better appreciation for how much counts can vary over time. The only result that really stands out to me, is the drop in platelets to just below the lower reference value of typically around 150. With CLL, when platelets drop lower than 100, that can be a trigger for starting treatment, but platelets can bounce around a fair bit.

I note there's also a NLR result for RA, which monitors changes in the Neutrophil to Lymphocyte ratio to hopefully track inflammation changes relating to RA. labcorp.com/tests/005013/ne... It's the first I've heard of this blood test derived ratio, but I'd caution that when someone has both RA and CLL it may be misleading. That's because its use is complicated by the confusion of not knowing whether an increased ratio is from an increase in lymphocyte count due to there being more CLL cells or more lymphocytes from an RA flare. Likewise if a fall in neutrophils was due to CLL bone marrow infiltration, or from lymphocyte and neutrophil changes associated with an RA flare. Specifically, in the results above, you can see that NLR has changed because both the lymphocyte count increased and the neutrophil count decreased. (9.6/4.2 =2.3 and 15.1/2.7 = 5.6)

If your husband could get his RA and CLL specialists talking (assuming that they aren't already doing so), that could result in a better health outcome for him.

I'd be interested in what medication your husband takes to manage his RA?

Neil

[strongmouse in reply to AussieNeil]

Thanks AussieNeil. The two posts show the general trend in changes over two years i.e.the first figure is a blood test result from June 2021 and then his most recent blood test result is for 2023 - the second number shown. The ones in between over the two years do vary, but the trend is as shown. He has been on tocilizumab infusion every 4 weeks since March 2022. Prior to that he was on methotraxate, but had to stop as he caught hepatitis E, which effected his liver.

The blood tests are based on the DAWN system of monitoring which is a standard for some people with RA. (He wouldn't agree with you that having both CLL and RA is in anyway fortunate!) He has had some swollen lymph nodes and night sweats. It can be hard to unpick with different illnesses. I should have added that he has diabetes type 2, has had cardiac stents and is on clopidergol, which he has been on for quite a few years.

It is difficult to unpick the various factors. In general the hospital is good at joined up working and it may have been Rheumatology who gave the heads up to Haematology and hence the more frequent appointments. It is all so confusing.

[AussieNeil Administrator in reply to strongmouse]

While your husband has some tough health challenges, there are co-morbidities to CLL that complicate its treatment more so than RA. I don't know how tocilizumab, which reduces cytokines can affect CLL, but it is cytokine messaging that cause some of the undesirable symptoms of CLL.

The difficulty in unpicking the various factors from his different health challenges aside, the iwCLL guidelines and similar management and treatment guidelines do state the triggers for when CLL gets to the stage of requiring treatment, with the blood count triggers allowing for a buffer for the impact of the treatment before bone marrow recovery begins. This post covers this: healthunlocked.com/cllsuppo...

From what you've listed, it might be falling platelets that eventually triggers his need for CLL treatment, as he has good to excellent haemoglobin levels - it's unusual to see that much of an improvement over 2 years, assuming that you don't have those counts reversed. A lymphocyte doubling time under 6 months when the lymphocyte count has exceeded 30 is the other blood count trigger for starting treatment and you can see that he is doing very well in this regard. (You can check against the other triggers covered in the post with regard to node and spleen size, etc.) While his platelet count is now just under the lower reference limit, iwCLL allows for platelet counts to fall under 100, provided they remain stable, that is not showing a concerning downward trend. I had a similar platelet count a decade before I needed treatment.

Neil

[Big_Dee]

Hello strongmouse

If your first set blood results were June 2021 and second set of blood results were June 2023, hubby is doing great! Blessings.

[strongmouse in reply to Big_Dee]

Yes, they were Big_Dee. Many thanks.