normal progression ?

[skytortoise]

Hello to all members,

I am on W & W CLL. Over the past couple of years my blood results have shown a slow steady increase or decrease in different components.

Results this month show a sudden spike in Total WCC from 21 to 44 and lymphocytes 20 to 39. Most other components are abnormal but stable.

What might have caused this spike and is this the natural progession of the disease before treatment becomes neccessary ?

Thank you and take care everyone. Freddie

[scryer99]

WBC includes absolute lymphocytes, so they would normally move together.

Was that over a month, a quarter, six months?

Spikes can happen if you are fighting off an infection of some kind. I’ve had occasional small drops in WBC, and some jumps higher than what my progression curve would suggest. Hence the saying “the trend is your friend”. One test is simply one snapshot.

Others’ experiences have differed but on trend I would say over time that such spikes have not “evened out” entirely for me. If you look at a graph over time, my counts have been gradually increasing both in number and in the “slope” of the curve, i.e. they grow a lot faster than they did at disease onset.

[skytortoise in reply to scryer99]

That looks to be the same for me. My trend over the last 4 years, with bloods every 6 months, is a parabella. Thanks for the advice. Freddie

[lankisterguy Volunteer]

Hi Freddie / skytortoise,

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With CLL there is NO "normal" progression, we all have different paths, and they are rarely straight. Yours seems to be a slow progression, and the spike will likely be an anomaly that will change again at your next blood test.

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To make things easier to follow, we suggest you ignore the WBC and focus on the two major components of WBC. Your ALC / Lymph number /lymphocytes is the best way to track your CLL, but there is no magic maximum, most of us are well above 100 ( e.g. 200+) before our other blood results indicate a need for treatment. For some of us, that may plateau or bounce around from test to test.

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Next check your ANC / Neut# / Neutrophils which will also bounce around, and any minor infection may cause a rise or drop. Eventually as you approach the need to treat it may go down, and any result less than 1.0 will likely get the attention of your consultant.

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If you are puzzled by the factors that your consultant will consider, you may want to review this Pinned Post to hear how some USA doctors decide when to start treatment.

healthunlocked.com/cllsuppo...

And these on reading blood tests:

patientpower.info/chronic-l...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

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Len

[skytortoise in reply to lankisterguy]

Thanks for the advice Len.

[SofiaDeo]

Did you get a vaccine recently? Do you have allergies, and tree or other pollen is bad where you are? Have you recently turned on the forced air heat, and dust is blowing from the vents, are you allegic/sensitive to dust? Did you get exposed to a pet you might be allergic to? Or were you sick with something potentially contagious, or food poisoning, etc? All those can spike white cells outside of CLL.

[skytortoise in reply to SofiaDeo]

Thank you. No, I haven't had any of the mentioned.

[AussieNeil Partner Founder Admin]

Hi Freddie, it's the doubling time (under 6 months) of the lymphocyte count that can be a trigger to start treatment. Illnesses and vaccinations can cause spikes that resolve in time. A good specialist would just monitor you more frequently and check other symptoms before suggesting starting treatment.

Neil

[skytortoise in reply to AussieNeil]

Thanks Neil. I have full blood tests every 3 months, FBC,LFT, Us &Es Lipids etc . because I have other minor issues apart from CLL which require self monitoring. The spike in lymphocyte levels was between August and October this year. My haematology monitoring by a doctor for the past 4 years is a 5 minute telephone conversation every 6 months. I don't have any infections and I haven't had any recent vaccinations. I will be interested in the results I get at the end of December. Freddie

[bennevisplace]

That spike in ALC is a departure from your very gradual progression since diagnosis. Your doc won't conclude anything without another FBC 3 months on. You'd better get all your autumn vaccinations out of the way ASAP so as not to confound the results. As you say, will be interesting.

[skytortoise in reply to bennevisplace]

Thank for replying. Next bloods will be on 22 December. I will post the results.

[skipro]

Awe, W&W, what a roller coaster of emotions and concerns. I feel for you and know it well.

I am a physician and relapse CLL patient awaiting a second go around with treatment.

With CLL it is common for counts to be all over the place because the lymphocytes are very reactive. In other words, any infection or cold or such can cause large swings.

My counts reached 225K before treatment, but the real indication for me wasn't the WBC counts, but a very enlarged spleen. I've seen and heard of patients with WBC of 500K and still not needing treatment.

Treatment usually becomes necessary if

You're ANC or neutrophils remain low.

Platelet counts stay consistently below 100

Hbg stays between 10-11 (anemia)

Your spleen becomes very enlarged

You have large painful lymphnodes

You have night sweats and or fevers of no know other cause, for more than 2 weeks

Extreme fatigue

So I think you are okay for now and hope it remains that way for a long time!

skipro

[skytortoise in reply to skipro]

I hereby appoint you as my physician. Honestly I learn more about my condition from talking with friends on this forum than I have had from years with my (several) haematologists. Thank you for your reassuring words. Thank you everyone. Freddie

[skipro in reply to skytortoise]

you’re welcome

[wizzard166]

Freddy

I have had large jumps like that in short periods of time, each of which then went back down again within a few months of the spikes. In my case it was clearly due to having been sick for weeks with a cold/flu I couldn't beat, and then getting blood tested for a normal three or six month visit right after recovering. Each time this happened was related to a huge increase in my work load during the end of the year Medicare Annual Enrollment period, so its no shock that physical exhaustion caused my already low immune system to lose out to a bug I had trouble beating.

I suppose I should be a little worried right now, being again in the midst of that eight week open enrollment, but fortunately I'm doing a lot more remote enrollments as opposed to in person ones. Maybe I won't break down and get sick again this year.

If you can tie in having been sick, to the spike in your WBC and ALC, then I'd bet that is the answer. If you cannot tie something like that in to the increase, then it could be a speeding up of your illness. Good luck with what transpires.

Carl

[skytortoise in reply to wizzard166]

Thanks Carl,

No, I can’t put it down to anything specific like an infection or stress etc. I’ll see what happens with my next results . Thank you for your kind thoughts. Freddie