Hi- just a basic question about my husband’s numbers.. is anyone a translator, lol ?!

[Bhappy64]

Hi all, thank you for this helpful forum!!! I just wanted to ask a couple questions. We are quite new here. My husband was diagnosed three months ago with CLL.

Last blood work as of Jan 2021-

wbc 54

lymph 48

lymph absolute Calc 40.58 (whatever that means?!)

Mean platelet vol 11.2

(And those have all remained about the same since October of last year. )

Of course there are many, MANY other numbers but I’m wondering if these are the main ones I should monitor-

So many abbreviations! Which should I care about?

What’s the difference between lymph# and lymph’s absolute?

There are other stats that I asked the Dr about: 17 and 11 and B and Q , and I Literally can’t remember what he said but I did jot those down somewhere....I think he has some kind of CLL that has to do with B but he doesn’t have 17 . Sorry I sound like such an absolute ditz but I feel like I’m learning a new language.

As far as I can guess we are going to be on a W & Wait for an indefinite time.

My husband is otherwise a healthy 57 year old who feels pretty much ‘normal’. Originally he went into the doctors office because he felt tired and a little bit unwell in his stomach in a little bit foggy soooo I guess it’s good that we went to see the doctor

Thanks for your patience with my rambling, and all the best.

Bee 🐝 Happy 😊

[Newdawn Administrator]

Here’s a chart from CLLIreland which will assist you;

clli.ie/faqs/lab-test-results/

Always look at the Absolute levels rather than percentages. The other test results you mention sound like your husband has had what’s called a cytogenetic FISH test which looks into his chromosomal profile. Not having a 17p deletion is a good indicator but I’m not sure what the B refers to except CLL is actually a cancer of the B lymphocyte cells. You’d need a copy of his results for greater clarity and explanation.

The ALC (absolute lymphocyte count) is an important indicator and becomes more so when the level is over 30 and begins to double within a 6 month period. It sounds like your husband’s levels are steady and haven’t changed since diagnosis which is a good sign. He’s also asymptomatic and well so could be on W&W for a very long time.

Don’t worry about absorbing all this info all at once, it’s like learning a foreign language at first.

Here’s an excellent booklet explaining everything to do with CLL;

media.leukaemiacare.org.uk/...

Best wishes,

Newdawn

[Bhappy64 in reply to Newdawn]

Thanks Newdawn 😊that’s awesome- very helpful info!!

[bennevisplace in reply to Newdawn]

Could be stage B?

[SofiaDeo in reply to bennevisplace]

True, we don't know what country/staging being used (RAI or Binet)

[thb4747]

Hi there. Just to add to Newdawn’s comment, I monitor Absolute Lymphocyte count (she’s explained why); White Blood Cell count — these 2 tend to go together —and Haemoglobin, Platelets and Neutrophils. Setting up a chart so you can see what’s happening over time is very useful as trends are important. Don’t be too alarmed when numbers go up or down on any one occasion as they are likely to bounce around. If any of these last 3 numbers (H, P and N) should suddenly drop there may be a need to treat the situation. This shouldn’t involve chemotherapy but might include steroids for a sudden dramatic drop in HGB, or injections of Granulocyte colony-stimulating factor (GCSF) to help increase neutrophils — these are the cells that fight off infections.

[Bhappy64 in reply to thb4747]

Thb4747 Thanks, that’s helpful- it’s literally a new language but you folks are excellent at tutoring. I appreciate it 😀

[SofiaDeo]

If you could give a bit more info, esp what country you are in, people in that country can give more of an idea what tests are routinely run, etc.

[Bhappy64 in reply to SofiaDeo]

Hi - we are outside of Boston In Massachusetts. The other result I failed to mention was from the FISH and showed that my husband has the deletion of 13q/ 14 . Thanks for asking. 😊

[cormac67 in reply to Bhappy64]

The 13q deletion is the "best" diagnosis as it is very slow growing and many people with this deletion never need treatment. If I were you, I would just read up about his deletion because as that is the one he has, it is overwhelming to read about other deletions in the beginning when he doesn't have them.

[Bhappy64 in reply to cormac67]

Cormac67, What a very encouraging and relevant response - thanks so much. I will do that ! 👍

[Smakwater]

Bhappy64,

The diagnostic lab sets the baseline for measure, while the disease progression trend is more the focus of what is observed on future blood labs. A continued rapid doubling in numbers over a short period is the not so desirable observation, while a slow gradual climb in lymphocytes is the general expectation of CLL not influenced by high risk markers.

There are a number of additional measures that correlate respectfully if what you are watching is with regard to time to treat "TT", which is covered in the second link provided by Newdawn.

JM

[Bhappy64 in reply to Smakwater]

👍 thanks very much!