Hi folks! Hope we're all travelling well. Can I tap into your collective wisdom and experience? I've just come back from my regular check up with the CLL specialist. My ALC has gone from 29 to 53 in 6 months, or 91% of the blood count. Before then, it was steadily rising, but dropping at intervals. The doc wants to see me in 10 weeks, and if the ALC has continued to rise he wants to treat. Now this does not disturb me: I've been expecting it. In fact, I think it would be a relief. I can at last deal with the disease. But this is what puzzles me: I've understood that the ALC, even if rising exponentially, is not a cause for treatment unless there are accompanying symptoms. Now I do not have night sweats, the nodes in my neck have not grown, my spleen is not enlarged, and my red blood cells are comfortably in the acceptable range. So, have I misunderstood the grounds for treating? Or are there circumstances when the ALC alone dictates treatment? If it helps, I have 13q deletion and unmutated IGHV. Thanks in advance.
Puzzled: Hi folks! Hope we're all travelling... - CLL Support
Puzzled
Current NCCN guidelines say
A high white blood cell count by itself is not a reason to treat CLL. Reasons to start treatment are listed in guide 3 (page 20)
nccn.org/patients/guideline...
Rapid increases in ALC requires more frequent monitoring for loss of marrow function - platelets, neutrophils, red blood cells.
You may get more response if you lock your post.
I would lock your post, and also give us your last 3 blood test results, so we can see a pattern your doc might be seeing (or not, and he is going by older guidelines).
For now, I think your doc is being (too) cautious - but then again, once stable CLL starts moving, it does tend to keep moving (you can look at my recent blood work posts), so he's also doing due diligence bringing you in more frequently to see how your disease may develop.
I'd take this news as a reminder to get yourself all set if you do need treatment in the mid-term (get any remaining vaxes done, get age-appropriate doc checks done, get any wanted travel/vacations done, etc)...
Thanks. Your reply is much appreciated. My stats:
June 2023 32.42
November 47.13
Jan 2024 34.48
Feb 37.92
June 59.25
Do you have more than ALC (which isn't showing much but relatively stable bloodwork to me)? Platelets, RBC, etc?
Most other stats within the acceptable range. Neutrophils declined (11 - 11 - 7). Monocytes ranging from too much to nothing (.86 - 0 -.59) Eosinophils the same (.13 - 0 - .59). Platelets are in fact increasing (166 - 176 - 220).
When you state "Neutrophils declined (11 - 11 - 7)", I take it that you are quoting the percentage of neutrophils in your WBC. What's most likely happening, is that because your absolute lymphocyte count (ALC) has increased, the percentage of lymphocytes also increased, all else staying approximately the same. Then because percentages must add to 100, the percentages of other components (including the percentage of neutrophils) must fall, even if their absolute counts increase by less than the increase in your ALC.
Please, please ignore all percentages in the white blood cell differentiation section of your blood test reports. They are dangerously misleading! I show how it's possible to think you are becoming neutropenic if you follow percentages, when your neutrophil count has actually improved here: healthunlocked.com/cllsuppo...
Basically, with CLL, our lymphocytes dominate our WBC both during watch and wait (way above the top reference) and again when treatment is effective (around or even below the lower reference). That distorts from the typical percentages seen in those without leukaemia. I've found this misleading focus on percentages even tricks GPs.
Neil
Yeah, I read the wrong line of the report. Neutrophils are percentages. What you say makes a lot of sense, though I still can't get my head around everything (which is why I'm a patient, not a doctor, right?) I had wondered how my ALC can approach saturation point when lots of other members have been reporting far higher counts? Am I simplifying it by saying if the ALC reaches 100% there is literally no room for any other kind of blood cell?
The ALC percentages have been 86 (Jan) - 89 (Feb) - 91 (June).
There's no blood lymphocyte count saturation point. In healthy folk, their absolute B lymphocyte count is about 1,000th of their red blood cell count. CLL/SLL cells are about the same small size, so it's rare for circulatory complications, even at extremely high counts. See: healthunlocked.com/cllsuppo...
Your ALC is just the easiest and cheapest way to measure one aspect of your CLL tumour burden and it has the least impact on your health. With respect to blood counts, it's how CLL infiltrates your bone marrow and expands your spleen volume, causing more sequestering of platelets and red blood cells (which it also filters out earlier than needed, putting more stress on your bone marrow). As your bone marrow infiltration increases, there's less remaining production capacity to produce the billions of replacement blood cells daily. Our bone marrows are typically around 25 to 30% infiltrated at diagnosis, but can exceed 90% by the time of treatment. At this point, an increase in bone marrow infiltration from 90 to 91% reduces your blood cell production capacity by 10% and it only gets worse with time and when you then add in the impact of treatment drugs. That's why the haemoglobin and platelet count triggers for starting treatment carry more weight than an fast doubling blood lymphocyte count.
ALC growth with CLL varies considerably and can flatten or even reverse - see attached. Always remember that CLL is a highly heterogeneous illness. A rapidly increasing blood lymphocyte count may or may not mean that your CLL is becoming more aggressive elsewhere, but it's an important signal that shouldn't be ignored. That's why your specialist is now monitoring you more closely - to see if your ALC continues to increase and whether your CLL is impacting your health in other, more concerning ways.
Neil
Wow. Interesting stuff. Just as I think I'm beginning to understand it - wham! My mind's blown again! 😆Thank you so much for your detailed answers. You're a mine of kindness, knowledge and wisdom. I'm going to trust my doctor, and do what he advises. Peace.
Completely fair to ask "why treatment now?" and maybe consider a second opinion -- certainly do so before starting any treatment.
Based on what you've provided here, you are not a candidate to start treatment. ALC of 53 and a doubling rate of something like 8 months does not justify it. Even if the doubling rate was much faster (mine was 3 months) you still should wait until other health issues arise - as AussieNeil reminded me at this juncture, there are patients here with ALC counts well into the 500k range who are still pre-treatment. You present no other symptoms.
Now, note the "based on what you've provided here" part. There may be other issues that are of concern - platelet counts are one, though even that's not a treatment trigger just because they are a bit low.
I'd put some pressure on the situation and ask a lot of questions about what symptoms are indicating treatment and what the advantages/disadvantages are about starting now. If your doctor does not take that well, or you get answers you don't like, then it may be time to find a better specialist.
Some doctors get into "I'm the expert, I'll make the decisions" mode. Some provide a ton of data. Neither approach is inherently wrong... for the right patient. My parents would much prefer the first doctor. I'd fire that one immediately.
cllsociety.org does provide options for remote consultation. That might be a good option here to get a quick read.
Guffy, I think you are mistaken in your assumption that rapidly rising lymphocytes (doubling every six months) are not in and of themselves an indication to treat. Doubling lymphocytes are included in the iwcll guidelines to treat.
These are just guidelines for your doctor, however, not hard and fast rules. Doctors often use their clinical judgment and experience to deviate from the guidelines. I would be wary of any advice you get on here that contradicts your doctor as there are many things your doctor knows about you and your cll labs than anyone on here can know. You have only given us a small snapshot of your situation.
Typically the indications to treat we have move in tandem, that is, if your lymphocytes continue to double, you may soon see your platelets and hemoglobin start to drop. Platelets below 100 and hemoglobin below 10 are also independent triggers to treat.
Deciding when to treat is as much of an art as it is a science for some doctors. Even though doubling lymphocytes in 6 months id an indication to treat, if you are feeling well and all your other markers are stable, your doc might delay treatment. If your doctor does want to treat, you might have him or her explain to you why the time is now. If you are not satisfied with the response, get a second opinion.
The analogy I use with the decision to treat is the three bears and their porridge. You don’t want to treat early when the porridge is too cold. But neither do you want to wait until you start feeling bad or get a complication like hemolytic anemia like I did. You want to treat when the porridge is just right. Your doctor may be seeing the writing on the wall for you that you will worsen quickly if your lymphocyte doubling continues. Your lymphoctyes are not all that high and not quite doubling, so I suspect your doctor will be guided as to how they are doing on your next visit. I doubt he will treat you if they are stable, it sounds as if with your unmutated status, however, he might be expecting them to jump further based on his experience with other patients.
Here are the iwcll guidelines to treat, I have highlighted the lymphocyte portion, good luck to you:
Active disease should be clearly documented to initiate therapy. At least 1 of the following criteria should be met.
Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia. Cutoff levels of Hb <10 g/dL or platelet counts <100 × 109/L are generally regarded as indication for treatment. However, in some patients, platelet counts <100 × 109/L may remain stable over a long period; this situation does not automatically require therapeutic intervention.
Massive (ie, ≥6 cm below the left costal margin) or progressive or symptomatic splenomegaly.
Massive nodes (ie, ≥10 cm in longest diameter) or progressive or symptomatic lymphadenopathy.
Progressive lymphocytosis with an increase of ≥50% over a 2-month period, or lymphocyte doubling time (LDT) <6 months. LDT can be obtained by linear regression extrapolation of absolute lymphocyte counts obtained at intervals of 2 weeks over an observation period of 2 to 3 months; patients with initial blood lymphocyte counts <30 × 109/L may require a longer observation period to determine the LDT. Factors contributing to lymphocytosis other than CLL (eg, infections, steroid administration) should be excluded.
Autoimmune complications including anemia or thrombocytopenia poorly responsive to corticosteroids.
Symptomatic or functional extranodal involvement (eg, skin, kidney, lung, spine).
Disease-related symptoms as defined by any of the following:
Unintentional weight loss ≥10% within the previous 6 months.
Significant fatigue (ie, ECOG performance scale 2 or worse; cannot work or unable to perform usual activities).
Fevers ≥100.5°F or 38.0°C for 2 or more weeks without evidence of infection.
Night sweats for ≥1 month without evidence of infection.
ashpublications.org/blood/a...
Thanks for the thoughtful and comprehensive reply. I shall ask the doc those questions. I think he's a great doctor. Maybe he knows something he's not telling me.
Please consider downloading the template the CLL Society provides for free, and fill it out with at least your past 12 months of the parameters there. No one uses percentages of anything, in determining whether or not to treat. You can ignore those fields if you like.
*The cell counts and their absolute numbers* are what a doc should be looking at, and how they are trending, as well as how fast. Lymphocyte doubling time of less than 6 months/rapid rise in 2 months alone can warrant treatment, but that's not happening to you right now, correct?
The various cell percentages are in the template, but they are used more as an indicator of how infiltrated your marrow may be; they are not used in treatment decisions. Also, a few other symptoms (as noted by CajunJeff) may also indicate if treatment time is close, which are posted in the "guidelines link" that Skyshark provided.
cllsociety.org/cll-sll-pati...
If you do not meet the Guidelines for treatment, you probably should not start treatment. You haven't noted if your immune globulins are zero, nor history of infections. I've seen someone start with zero immune globulins along with high amount of bone marrow infiltration, even though the other cell lines routinely monitored (RBC, neutrophils, platelets) were low normal. Nor is your age, any other diseases, or other things potentially affecting treatment been stated. One's entire medical history is assessed, not just a few things from a lab report.
Ask your specialist the factors *why* they think you need to start, if learning the treatment guidelines and viewing the trends of numbers of certain cells, doesn't make it apparent why your treatment time may be near.
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