I've had my 6-month check-in blood test. Levels seem to be normal all round or just starting to slip into abnormal range (e.g. platelets, wbc). My lymphocytes are at 7.61, rising from 6.46 back in December. My haematologist pointed this out first. I looked this up afterwards and saw that normal range is 1.0 - 4.8. I guess with mostly everything else floating around normal levels, the doctors are just keeping an eye on this for right now.
What are considered dangerous lymphocyte levels when it comes to CLL? I'm in the UK, so I don't know if the NHS approaches these kind of levels differently from US doctors.
Best wishes,
C
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SAT_poet
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Absolute lymphocyte count does not have a top-end number indicating treatment. They used to consider 100 as a treatment marker but these days treatment onset will be indicated by other actual health issues caused by CLL -- lymph swelling, spleen swelling, anemia or platelet counts becoming harmfully low, things like that.
While doubling rate of ALC is considered to be indicative of disease progression, it's not by itself a concern unless it gets very fast (<6 months and ALC above 30).
Given the numbers you provided, you are in an early stage and odds are good that you will go for years before needing treatment for CLL. Many CLLers are luckily in that boat.
Thanks, scryer99, that's very helpful & reassuring to hear. I got diagnosed a year ago this week (it's thought I've had CLL for 3-4 years already), so I'm still learning about it--like walking through a haunted house with only a flashlight and jumping at anything that moves.
Well, if it makes you feel better, I was at 20 six months in, 50 a year in, and 300 at treatment start 9 months later (due to a lacerated spleen and some other issues, not the ALC count). And there are folks here who have progressed faster than that.
We fixate on ALC count because it's the one number that sort of feels like a scoreboard. And it does correlate a bit to symptoms. But the numbers aren't the story, just an indicator. And in many cases that story takes years to develop. So try to put down the flashlight :-). My advice is to travel now, because if you ever do end up in treatment, travel will be off the table for some period of time.
Thanks! Travel is what my wife has been recommending as well & ensuring we do since we got the news: we've started traveling to places we've been talking about for some time. Carpe diem!
Scryer, I wrote this post 8 years ago about the "100 treatment marker" and I still haven't heard one recognised CLL specialist mention it. Best I can determine, it's a threshold used by general oncologists, who tend to use it as a generalised threshold for all their leukaemia patients. healthunlocked.com/cllsuppo... As you pointed out, it's the doubling rate which is important for CLL.
I hope this puts your very low lymphocyte count into perspective! Years ago, one of Australia's top CLL specialists answered a similar question to yours (but for someone with a much higher ALC), asking the person "How do you feel?" CLL specialists look for confirmation from other indications that your CLL is progressing before suggesting treatment.
It's interesting - I came across the 100+ idea on cllsociety.org, which had an article somewhere in their W&W section on treatment thresholds. It had a theoretical quiz to doctors on treatment indicators, and implied that many were using the 100+ ALC count as an indicator for treatment (and they shouldn't be). In the general cleanup of that site, though, that article appears to have been superseded.
Agreed I've never heard that from a CLL specialist. And my hematologist was up on things enough that he treated high ALC counts as an indicator that other symptoms were more likely to emerge, not as an indicator for treatment.
Hello Sat Poet. To my understanding, unlike hemoglobin and platelets which have defined cutoff levels to trigger treatment, there is no specific number for lymphocytes that is used as a published guide to treat.
My doctor once told me he starts getting concerned at levels over 100, but that it is the pace of the progression that is more important than any absolute number. Some people will be at several hundred thousand lymphocytes before needing treatment.
Insofar as a published number used to trigger treatment, with lymphocytes its doubling time in six months. Someone whose lymphocytes go from 25 k to 50 k in six months might need treatment whereas someone who goes from 200k to 210k might have more stable cll and not need to treat.
Thanks, cajunjeff. I know the W&W stage is a good stage to be at, but it can be unnerving at times trying to figure out which symptoms/levels are concerning and which aren't for the time being.
It sounds like the basis of Wait & Watch🤷🏽♀️ My WBC/ALC stayed at 20K for 10yrs 2009-2019. RBC/Hgb/Plts all normal until 2020. WBC/ALC started creeping up to 35/49/89 & I became more symptomatic with this increase. Then Plts started dropping 115/90/76 but by the time Hgb started dropping 12/10/9.2 I felt sick as I slid into stage 4, fatigued, painful joints, mental fog. Then started the BTK Inhibitors & those side effects symptoms compounded the other symptoms. The trick is to adjust to the effects of treatment & find your new normal. #GODSPEED🙏🏾🙏🏾🙏🏾
Gonna add - my retiring doc mentioned at my last appointment that if everything is going relatively well, his concern now starts at 150K (vs the old 100K). And even then, it's concern, not "OMG, we have to treat right now."
No upper limit. US, UK and other countries share medical expertise across all conditions, CLL is no exception. So you will see very similar approaches to managing the disease.
Your numbers are very low, you will find that the RATE of increase in Lymphocytes will interest your Haematologist, called the "doubling time".
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