CLL Support Association
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Wait & Watch question

Hello Friends,

Happy Holidays!

I have rather remedial(?) question:

When we Wait & Watch, what are we Waiting for? symptoms bad enough to seek treatment?

I mean, as far as numbers, like wbc continuing to climb -- mine may be climbing by 7.4 every 12 days, but I feel ok -- right now about 160.

I'm not sure if this is the same question reworded: If we never have symptoms, then we never need treatment, right?

I have found some related post, like: Watch and wait or treat question

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Yes there is a point when CLL is treated, often called the treatment window. It is a combination of things, like the rate of increase in your absolute lymphocyte count [ALC] , B symptoms, like weightloss, nightsweats, nodes expanding both externally and internally... drops in value of other blood types, like platelets, Hgb and so on.

Look for tends over months or years, changes in white blood cell count [WBC] test to test are pretty meaningless.

I know patients with white blood cell count [WBC] over 450K and still not in treatment, so don't stress on the numbers

~chris

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BINGO

I knew that! lol ;)

Thanks!

Happy Holidays!

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I left my doctor at highly reputable facility a few months back because both 2 years ago at 50K and last year at 60K he said the same thing: "at your current WBC level you'll likely need treatment sometime next year". This with zero symptoms except for "tiny" nodes. Thanks to this site and its references I knew a steady but very slow uptrend in WBC was zero reason to begin Tx.

-gene

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Chris I've seen a number of people say they get occasional nightsweats, which applies to myself also. Are you aware of what level of nightsweats and weightloss is considered a concern for those of us with CLL? Thank you

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CLL nightsweats are quite remarkable because they are soaking ... like someone poured a bucket of water on you..

If Yyou start having them a few times a month inform your doctor.

Unintentional weight loss of 10% or more within the previous 6 months.

Here are the CLL Guidelines for doctors and section 4 covers these things.

bloodjournal.org/content/bl...

~chris

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Thank you Chris. This is really useful

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I think we are monitoring rather than waiting Tedro and to answer your question, I think there are time when we begin to need treatment even if severe symptoms are not evident. Typically this would be due to plummeting platelet counts;

100,000 - 149,000_ _Little to no risk of bleeding

50,000 - 99,000 _ _ _ Increased risk of bleeding with injury

20,000 - 49,000 _ _ _ Risk of bleeding increased without injury. Spontaneous bruising will be seen (mostly on the arms and legs)

10,000 - 19,000 _ _ _ Risk of bleeding greatly increased

Less than 10,000_ _ Spontaneous bleeding likely

Treatment discussions usually start at levels consistently well under 100,000 and treatment can be indicated at 70,000 but there’s no hard and fast rule as other factors matter.

Anaemia indicated by falling RBC and haemoglobin levels but quite often we have fatigue and breathlessness with severe anaemia. How we are feeling is important because the body usually tells us when things are beginning to ramp up.

Don’t get too hung up on your WBC because it’s not as useful an indicator as the progress of your ALC (absolute lymphocyte count). A doubling time over 6 months (once it’s over 30) can start the treatment discussion and a doubling time over 2 months would probably indicate the need to start treatment. The key issue isn’t necessarily numbers per se because people have dodged treatment with an ALC into the 300 and 400s. However, specialists then start to look at the whole picture and the level of bone marrow infiltration becomes a concern. In the final analysis, we need to be able to safely expel all the errant cells. Once my ALC hits 100, I’ll be wanting a much closer look see to assess what’s happening. I want to feel sure my kidneys will be able to cope if I need FCR and tumour lysis syndrome is a consideration.

I’ll be absolutely honest and say that a WBC progressing at 7.4 every 12 days, it doesn’t sound like a meandering presentation but as Chris says, don’t fret the numbers in isolation.

This link is very helpful. I see Chris has already answered but I’d started so I’ll finish! 😉

cllsociety.org/2016/03/cll-...

Newdawn

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Great post, thank you!

Have safe and merry holidays!

btw, should my blood test have an "ALC" column?

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You too Tedro.

Yes it would normally indicate your ALC.

Newdawn

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absolute lymphocyte count [ALC] is in a section called Differentials.

It may be called by ABS lymph, Lymph# or just #

Forget the percentages...%

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got it! thanks!

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I don't see that column either. Is the lymph # the ALC? Mine is 180.9...says normal is under 3.4.

WBC is 200k.

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Yes, it would be the absolute lymphocyte count [ALC]

The ratio to white blood cell count [WBC] you mention sounds about right...

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the link, i think, supports what i already think. which is great!

can't wait to ask the dr why he wants a BMB.

i suspect he'll say something to effect, as he did before: i can tell everything from that.

then, as i have and never got an answer, kinda of ignored, i'll ask: can we do other test instead of this "cutting" one, like FISH and Flow Cytometry?

--what do think he'll say? moreover, why haven't they already done that in 2 yrs? --what will he say?

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Tedro, I’d invite you to re-read the responses you got when you last discussed this question because there’s some very informative, in-depth answers contained. Seemingly, your blood results are somewhat anomalous.

You will in all likelihood already have had a flow cytometry test leading to the initial CLL diagnosis. It’s the more in-depth cytogenetic testing you’re thinking of, FISH. Your doctor may feel a BMB test is necessary in view of the inconsistencies that were discussed here when you posted your lab results.

Time to start enjoying Christmas now. They’ll be time enough for this after the holidays. Enjoy!

healthunlocked.com/cllsuppo...

Newdawn

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excellent summation. Got it!

THANK YOU

very Merry Christmas to you too, Newdawn!

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My dr, wierda, informed me that it is to wait for treatment. Treatment 2 yrs ago would last 5-10 years. So the longer u can wait the longer u r around. Also treatment is expensive and is for life. So prolong it....

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