If your lymphocyte count doubles within 1 year, it is typically an indication to begin treatment? or just more frequent monitoring? My ALC hasn't doubled yet. February it was 6,0 and now it's 9.2, I will take it again January so if it's approaching 12.0 at that time it's a bit concerning. Just wondering if anyone can shed some light here as to how much the ALC tends to fluctuate, is 3 to 4 points common? for me it seems to be always creeping upward, and rarely down.
In my situation, I am currently asymptomatic, perhaps the occasional night sweats, which could be related to other things, I guess, I also had a CT which was ok.
Thanks in advance for your kind support and advice
stay well
CAVE 😀
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Cave123
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Mine is doubling every 3-4 months and still no firm treatment plan at 130.
My ALC has also fluctuated a little, with two appointments out of 12 showing a decrease.
According to cllsociety.org there is no firm rule for ALC counts driving therapy decision. Doubling < 1 yr is a risk factor, but not a sole determinant of treatment. Neither is high counts, as 100 used to be something of a dividing line.
They also say that doubling rates for counts <30 don’t mean too much. So I’d give it some time.
Cave, as Scryer implies, your Absolute Lymphocyte Count is so low, (way under 30), that measuring doubling time isn't really needed. Changes in your other lymphocyte types (NK, and T cell (helper and cytotoxic), have more of an influence.
Skryer, I gather the 100 figure comes from general oncologists who lump the treatment of CLL in with all the other B cell Lymphomas. I've seen cases of members with CLL unnecessarily treated by wrongly applying this rule. See:
Along the lines of what you'll have read on the CLL Society, CLL Specialists consider the doubling time as a warning that your CLL may be on the move, so needs closer observation. It's the least of the reasons for starting treatment. The CLL can quieten down again and the Absolute Lymphocyte Count can level off, as yours may be doing. To put this into perspective, we have members in watch and wait with counts over 500. CLL cells are small, just slightly larger than red blood cells and aren't sticky, so even really high counts aren't likely to be a problem.
is it typical these past couple of years, especially with the boosters of 2022 that when ALC have gone up more rapidly ‘than usual’ - but not in the concerning trend of doubling -to regard it on the multitude of vaccines ? It’s plausible, right?
The ALC indeed typically goes up in response to illnesses and vaccinations, but then subsequently drops back to the usual range. It's certainly possible for unmutated IGHV CLL to respond to vaccinations and the lymphocyte count to stay high.
Thanks Neil I appreciate your input and expertise. In fact, the first thing my hematologist asked after seeing my blood results was "have you had a vaccination in the past 4 weeks? and have you been ill recently?" my response was no to both. (my IGHV status is mutated - fyi only) Re: Changes in your other lymphocyte types (NK, and T cell (helper and cytotoxic), have more of an influence. Can you briefly elaborate on this ? How can I monitor this ? This does not sound like something I could see in a CBC ? Thank you very much
You are correct; you need an immunophenotype test to tease apart the different lymphocyte types, but with such a low lymphocyte count it really isn't necessary. While IGHV unmutated folk are more likely to react to various bugs than those who are IGHV mutated, your lymphocyte count is still very low, considering the highest I've heard of in a CLL patient is 1,400 (1,400,00 on most US lab test reports).
Keep in mind these other reasons for your blood test results changing:
Endeavour to manage factors within your control; same routine a few days before your blood test, particularly in the hours beforehand. Get tested at the same place and same time of day. Lymphocyte counts vary throughout the day.
Mine doubled (slightly more, actually) when had next appt after my two Covid vaccinations, and doctor didn't act worried but did schedule next appointment 4 months rather than 6 months out (probably just for me). By next time, it had gone down but still quite above what it had been.
I suspect so; Mutated IGHV CLL by definition has a B cell receptor specific to the rearrangement in the IGHV gene. Unmutated IGHV B cell receptors are apparently less selectively triggered.
That 500 “top end number” of “people with high ALC still in W&W” is surprisingly hard to track down. Thank you for posting it.
Squares with what I’m being told, which is “treatment likely within the year”. If I double twice more I’d be at that level and while that by itself would not be a treatment indicator, the accompanying progression of associated symptoms (thrombocytopenia, spleen swelling, lymph node swelling) would put me over the line if they progress at similar rates.
Thanks Scryer, I appreciate your response. RE: Mine is doubling every 3-4 months and still no firm treatment plan at 130. Can you tell me when you first noticed the elevated ALC? What the count was at that time, and what type of screening / follow up regiment was suggested, i.e., was it every 3-4 months from when you first noticed the ALC increase? Glad to hear that you are doing so well and again thankful for your insight. Stay well CAVE 😀
Sure… was caught on routine blood work 22 months ago by my persnickety PCP, he referred me to oncology for follow on blood work. ALC was 8 though not all monoclonal. Oncology diagnosed as high-count MBL and suggested a 3 month blood test regimen, after review and a CT scan to confirm no hidden lymph swelling and get a baseline.
CLL diagnosis provided March 2021, ALC was 9 and manual blood smear review indicated monoclonal, matched with flow cytometry test results to indicate CLL and not diffuse B cell lymphoma, Hodgkins, etc.
Tested roughly every three months for first year. More like every 1-2 months the second year, plus a lot of additional work for other issues as I have some potential comorbidities due to family history and emerging symptoms.
They did the initial CT and one more last spring when spleen swelling started to bug me. FISH and other genetics early year 2. That’s been it for the purely CLL related stuff.
Counts were the aforementioned 9, about 20 in fall 2021, 50 last spring, 125 last week.
In general it’s been a steady progression in ALC, with curve and doubling rate arcing up over time. Two tests out of 12 or so along the way showed minimal declines in ALC so there is some variability. Last test moved doubling rate down to the 3 month range.
Other symptoms are progressing as well, on roughly similar curves, though the platelet deficiency has been more stable.
Funny story about the comorbidities - ended up in the ER in March for something non-CLL related and the ER doc comes in in a tizzy because my WBC was “really high”. I laughed and said not really, go talk to the oncology guys. He made darn sure oncology signed off before I left ER. I gather oncology is rather protective of its patients.
Yes your ALC seems to fluctuate quite a bit. Thanks for sharing this. So if I understand correctly, at first HC- MBL, just like me, my flow test was 3.3 x 109/L clonal B lymphocytes. So your number of clonal B lymphocytes on your flow exceeded 5.0 x 109/L, ? and therefore a diagnosis of CLL in March 2021. Curious to know specifically the reason for changing the diagnosis from HC-MBL to CLL. That's a funny ER story.... how quickly we become experts when we take steps to increase our knowledge - it's so important to self-advocate from a position of knowledge. 👍Stay well
It's been a while so my memory is a little fuzzy here, but my understanding is that at low levels of lymphocytes, some of them may not be the monoclonal lymphocytes associated with CLL. I seem to recall when I was first told I had high-count MBL (a CLL precursor, 4-12% of older Americans get that at some point), that my number was above 5 but that did not mean I had CLL because some of them might be normal lymphocytes.
What I am unsure on is whether the CLL diagnosis was simply "counts above 5 persisting" or whether it was a result of more detailed examination of the 8-9 x10^9/L lymphocytes that were there. I think it was the latter, but not being a doctor I may be missing something in the reams of test data.
My electronic health records show 230+ test results since my initial MBL diagnosis 22 months ago so it's easy to miss stuff. Your average blood work generates 5-10 of those each time, and then there are the more complicated ones like CT readouts.
Thanks Scryer that's consistent with what I've read - above 5 x 10*9/L ( clonal B lymphocytes ) is CLL, but most state that the number is arbitrary not definitive. Thanks again for sharing. Stay well.
I started treatment when my ALC was only 17 with a doubling time of 5 years. As others have wisely pointed out this measure may not necessarily be the main reason to start treatment. While I had no symptoms, no enlarged lymph nodes, the trigger to start my treatment (in Toronto) was severe neutropenia (0.2-0.5) that had been present a number of years.
As you see responses on this site, you realize that Cll progression and treatment for individuals is not homogenous. Some people with ALC in the 100’s of thousands continue without treatment while others with ALC in the teens and negligible doubling time start treatment. Cll specialists look at a number of factors including how you look and feel, ALC, WBC, hemoglobin, platelets, neutrophils, IGG and trends in deciding when the right time (if ever) for treatment.
This site is great (especially for optimists😀) because it shows you many paths to maintaining a good life with this chronic disease
It just goes to show that the triggers for treatment will be different for each cll individual. Since the beginning of my first treatment in early 2021, my neutrophil count is now consistently over 1.0. While this is still considered low, it’s no longer severely low. The main point in starting treatment early was to lessen the potential for severe infection and I think this has been achieved, for now.
Unfortunately, while most of my other numbers are approaching normal, my ALC continues to be stuck around 13 after 18 months on Acalabrutinib. It’s disappointing since most of those on Acal report (on this site) quick and long lasting drops in ALC in the first year.
I suspect that there is a group of cllers on Acal who are in this gray area. Essentially we are on w&w while taking Acal.
I’m not complaining - no symptoms, no infections and no side-effects
A few yrs ago I heard Dr Weistner, a CLL expert at NIH, say MRD status is not the end all and be all for everyone. Folks can have long lasting remissions on a BTK even tho ALC may always remain above the cut off. You may be one of them. I wish you a long remission with continued absence of sxs.
That sounds very reassuring, thank you. With no side effects, neutrophils staying above 1.0 and an weekly IGG boost from SCIG, I’m happy to take Acalabrutinib “forever”😀
Thanks for responding to my post Vizilo, and for sharing your knowledge and interesting personal experience. I'm curious to know the reason why Acal was selected as your first line treatment, was it because of the neutrophils specifically? what were the other determining factors helping you make this decision? Glad to hear that you're doing so well, we're lucky to have you here participating on this forum. CAVE
My cll specialist believes that any cll treatment is likely to boost the production of neutrophils. Choice of treatment was limited by 17p deletion and TP53 mutation. Given that I have a history of hypertension, acalabrutinib was recommended over Ibrutinib given that acal has demonstrated a lower incidence of heart related side effects.
I'd relax right now because your numbers are so low I can't imagine treatment being anywhere near such a decision. I'm 4 years and nine months now in W and W and a couple ofd times I had a 50% jump in WBC in three months. Between October 2019 and January 2020 it went from 27,400 to 41,400. Between Sept 2020 and December 2020 it went from 34,000 to 59, 100. Both times I had just worked my "Medicare Season", during which I have an eight week stretch of intense amount of work. I got sick mid way through the eight weeks, felt I couldn't stop working, and nearly dropped from total exhaustion multiple times in each eight week stretch. My CLL Specialist felt that being as sick and exhausted as I had been was likely the cause each time, and she ended up being right. Each time the numbers dropped back down significantly over the next three months.
Overall what I'd say is your current numbers are really low in the scheme of things, so I wouldn't worry about up and down movement right now. I'd also make you aware that fighting illness and exhaustion could very well be a key to some more than average upward movements. During those episodes of upward movement also, my RBC and HGB stayed fairly decent and my Platelets didnt drop much either. Those other two things have as much significance in decisions on treatment as does the WBC or ALC movement. If your with a good CLL Specialist, just relax and let them guide you.
WOW 👍 Thanks Carl for sharing your experience. I'm hoping my ALC drops, or that I see fluctuation in both directions instead of just upward. The thing that keeps me up at night is wondering if elevated ALC is being caused by an illness or infection that I am not aware of. For this reason, I test for Hepatitis (which was negative), got some extra shots like DTAP and Prevnor 13 / Pneumomax 23, and of course I got the Covid vaccines. (but these were all before the recent ALC increase) I feel ok, other than stress / anxiety but managing those. I will not work to the level of total exhaustion, nobody should ! So in the absence of any known illness, I guess I'm speculating if my CLL is on the rise but I guess like you and many others I'm in W & W, which for the time being is considered a good thing. Thank you for the re-assuring words and advice, you are kind, stay well, don't work so hard !
Doubling time means that if you have 10 now, you will have 20 in 1 year, 40 in 2 years and so forth. You may not need treatment for 5-7 years depending if the trend stays that way. Some times the numbers stabilizes and don’t progress at the same rate. It depends on many factors that are difficult to predict at an early stage. I hope this helps to put your mind at ease… 🙏
Your figures are for a doubling time of 12 months. The trigger for looking for other signs of active disease is a doubling time of under 6 months. So if you have 10 now, you will 20 in 6 months time, 40 in a year, 160 in 2 years and so on. At that uninterrupted rate of increase, it will still take 3 years to reach the highest watch and wait lymphocyte counts in our community. The highest count I've heard of with CLL is 1,400, which still only means that there are about as many CLL cells as red blood cells in that person's blood.
Thanks for the clarification, I wrote 1 year becase I see my oncologist once a year, and that’s the time parameter that I use in my situation… But your clarification is worth noticing for most situations… 👍
I'd like to thank everyone that replied to my post ALC Doubling Time 1 year. This is a great group with wonderful people sharing their experiences and offering their kind support - just love it ! CAVE
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Different ALC numbers
Absolute Lymohpcyte Count (ALC) and other metrics
ALC and WBC doubles in 6 months 
Puzzled
