Hi- just a basic question about my husband’s n... - CLL Support

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

Bhappy64 profile image
12 Replies

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 😊

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Bhappy64 profile image
Bhappy64
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12 Replies
Newdawn profile image
NewdawnAdministrator

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 profile image
Bhappy64 in reply toNewdawn

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

bennevisplace profile image
bennevisplace in reply toNewdawn

Could be stage B?

SofiaDeo profile image
SofiaDeo in reply tobennevisplace

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

thb4747 profile image
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 profile image
Bhappy64 in reply tothb4747

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

SofiaDeo profile image
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 profile image
Bhappy64 in reply toSofiaDeo

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 profile image
cormac67 in reply toBhappy64

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 profile image
Bhappy64 in reply tocormac67

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

Smakwater profile image
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 profile image
Bhappy64 in reply toSmakwater

👍 thanks very much!

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