Help explain my diagnosis..?

[romarin]

I have spent hours reading this forum and other material but really struggle with all the scientific terms, still don't really understand my own diagnosis (Jan 2014) The metaphors help enormously. So I know I am dancing with the bear and my blood cells are like Piccadilly Circus, and the bad guys are beating up the others.

Anyway- here it is- if anyone would care to explain what it all means...

I know my white blood counts are close to double in a year which might mean chemo, altho I am actually pretty well. And I gather genetic wise that unmututated is a Good Thing but when I asked my specialist to explain further I was utterly lost. (I suspect that was the bad news.)

I had scan and bone marrow probe, and am due another scan soon.

So_

Binet Stage B CLL associated with unmated immunoglobulin gene rearrangement and balletic 13q deletion on cytogenics.

Full Blood Count

Hb 127g/L

White Count 128 x 10 (9) L (increased from 103 4 months before)

Neutrophils 3.22 x 10 (9) /L

Platelets 154 x 10 (9) /L

I have tried comparing my blood results with the CLL understanding your blood results but they don't seem to correspond. Is there a word for being numerically dyslexic.

If there is anyone able to take time to explain this I would be eternally (?) grateful.

Thanks and good wishes to all.

[Oleboyredw-uk]

Hi Romarin,

You will get slightly different responses dependent on where you live, country-wise that is. I guess from your reference to Piccadilly Circus you might be UK? Please confirm your country and you could avoid some misleading responses.

ALC (Absolute Lymphocyte Count) is also an important number if you have it. Note: my hospital uses LYM as the acronym for this but ALC is more normal.

These are the 'normal' ranges I have from my hospital:

Hb 130-180 (140)

White Count 4-11 (5.3)

Neutrophils 2-7.5 (4.4)

Platelets 130-400 (153)

ALC(LYM) 0.9-5.2 (0.5) ..... gradually heading for normal.

I had FCR in 2nd half 2012 so coming up to two years ago finished on 23/12/2012! I've put my June 2014 numbers in brackets for info.

Others will be able to comment better than I on the rest of your questions. At 2.5years since diag I still feel a bit of a learner.

rob

[AussieNeil Partner Administrator]

Hi Romarin,

A 13q deletion is the best CLL marker to have. Those with unmutated immunoglobulin gene rearrangement tend to have a shorter time until treatment than those with the mutated version, which could explain your doubling time of about a year.

Dr Sharman on 13q deletion:

cll-nhl.com/2012/07/13q-wha...

With regards to your full blood count results, they are all reasonable with the exception, as you'd expect, of the ALC from your growing B-lymphocytes.

(Below I'll reference the normal ranges my laboratory uses, but they do vary from lab to lab and country to country.)

Your haemoglobin is just under the normal range of 135 to 175. You might notice you get short of breath more easily, particularly if your red blood cell count is below normal.

Your neutrophils are in good shape - normal levels are 1.8 to 7.5

Your platelets are OK; I've seen normal ranges of 130 to 400 and 150 to 450

Given you are feeling pretty well and there's nothing particularly concerning about your blood test results, you may be able to put off treatment for some years yet, even if your ALC continues to nearly double each year, if you continue to feel well and have otherwise adequate blood test results. See my old post How high can you go? (And what does it matter?):

healthunlocked.com/cllsuppo...

Hope this helps,

Neil

[romarin in reply to AussieNeil]

Thank you so much. This helps a lot. I guess I forgot to mention I do have swollen nodes in my neck but they don't hurt. But also this gives me a bit more power = information in case I need to argue against treatment yet. Last time I saw the specialist he said normally ALC doubling in a year indicated treatment.

Thanks again for the support.

[AussieNeil Partner Administrator in reply to romarin]

CLL guidelines list one criteria for starting treatment as "lymphocyte doubling time of <6 months (only in patients with >30 000 lymphocytes per microlitre)". A doubling time under a year is an indication that the need for treatment may be approaching, but your specialist should be looking at other factors as well, such as whether your swollen lymph nodes are becoming a concern.

I'm glad that you are feeling more empowered to intelligently discuss the particular trigger points your specialist sees in your case for initiating treatment. That's a big part of what this site is all about.

Neil

[lankisterguy Volunteer in reply to romarin]

Hi Romarin- Neil, Chris and Rob have given great technical information & advice.

What we have all learned is that there is no precise formula for when we (or you) will need treatment (or ask for it).

With your 13Q unmutated, with palpable nodes and a faster doubling time, your doctor is probably predicting a future point in time when he believes some symptoms will arise that makes waiting uncomfortable and unwise.

For many of us we can have a WBC (White Count) between 100k and 500k before our Red blood components ( HCT, HGB, platelets) start to drop quickly, that could cause fatigue or muscle cramps may become severe at any point. Some of us get frequent infections or swollen spleen and lymph nodes that cause severe discomfort. Some get really severe night sweats or lose weight suddenly.

So no one can really predict which factors will rear up and exactly when that will happen to you, but you should be alert for all of them, especially the infections, and don't assume that your immune system will behave as it has in the past. When you get a slight fever, see a doctor immediately! Small skin cuts or a cough can become life threatening to you.

See your specialist on a schedule he suggests, get your blood tested, report your symptoms accurately and honestly, and don't ignore any new problem or potential symptom. You will not be considered a hypochondriac by an experienced CLL expert- you will be a wise and intelligent CLL patient, avoiding a health crisis.

Len

[romarin in reply to AussieNeil]

Sorry I am still stuck. Is white cell count same as ALC?

How does 128x 10 correspond to figures of thousands for ALC?

[Cllcanada Top Poster CURE Hero in reply to romarin]

128 K is the same as 128 x (10 to the 9th power/litre) or 128,000 per micro litre often shown as μL

White blood cell count (WBC) is primarily Neutrophils, B cells, T cell, Natural Killer cells, and a bunch of others...

The neutrophils make up about 60-70 of the WBC and they do their own thing, go up and down...

To see what the subset of the other cells are doing, B cells, T cells and NK cells, the neutrophils are mathematically removed from the WBC and this leaves us with a smaller population we call the absolute lymphocyte count (ALC) .

The T cells and NK cells are fairly constant over time, so, changes in the ALC number, indicates an expansion of the B cell population... of particular interest in CLL.

If you know your white blood cell count (WBC) and the PERCENT of lymphocytes, you can calculate your absolute lymphocyte count (ALC) .

ALC = white blood cell count (WBC) TIMES the percent of lymphocytes expressed as a decimal...

By way of example, if the total white count reported is 25,000 and the percentage of lymphocytes reported is 80%, the calculation is as follows: 25,000 x (80 ÷ 100). The result is an absolute lymphocyte count of 20,000.

There are other methods of separating out only the B lymphocytes, but they are expensive and not done much clinically... other than for the initial diagnosis of CLL, using flow cytometry.

~chris