Sorry all, I am making up for the lost time that I haven't been on here. LOL
I am curious, for those who are, or were, in the watch and wait stage, how much did you abs lymphocytes go up either 6 month or yearly intervals. Did they flactuate a lot? Or do they consistently go up little by little? Mine has been about 1 point every 6 months or so. I know they say it's typical to rise little by little, but curious as to how much for others.
Hope everyone is well!
As with everything CLL, while you will find some similarities in a general sense. we all have high lymphocytes, but the odds of any two having the same level of high or of them traveling up at the same rate are very low.
I was diagnosed in 2001 with 20,000 lymphocytes. In 2021, I had (if I remember correctly) maybe 80,000. My low platelets and and enlarged spleen were reasons for needing treatment--but, those took 20 years to get there, too. The spleen never bounced back down from going higher that I remember--though the platelets bounced a lot.
I, like you, have the 13q14 deletion--but it is my only deletion. You have a different profile with Trisomy.
Like clllady25 said…there might be some with similar changes in counts, but everyone is different. I was diagnosed in 2016. ALC of 18.5. By 2020, it was 31.5. Fell to 18.3 in 2021-22 and now at 23. All other counts have remained in normal range. The longer you go in w&w, you will understand the “pace” of your disease. Some progress quickly and others at a snail’s pace. There are some on here with ALC 5x of what mine is and still are treatment free.
Be well!!
Here is an article about different CLL growth patterns:
pmc.ncbi.nlm.nih.gov/articl...
We found that the presence of del(13q) is associated with logistic growth, while trisomy 12 was associated with exponential growth.
That study is the best I know of with regard to showing the different ways the Absolute Lymphocyte Count (ALC) can change over time in CLL. It can climb exponentially, plateau, even drop. There's around a 2% chance of spontaneous regression/remission for those who are IGHV mutated, but that unfortunately rarely happens in those who are IGHV unmutated.
We also need to remember that the CLL tumour load in the blood is just one part of the total CLL tumour load. CLL is a very heterogeneous disease! People with the Small Lymphocytic Lymphoma presentation have such low levels of CLL cells in their blood, their ALC (and hence WBC) is in the normal range. Further there's not necessarily a correlation between what happens in the blood and what happens elsewhere. While our spleen, nodes (typically around 500 or so) and bone marrow are where CLL cells mostly tend to accumulate, they can also accumulate in the liver (not uncommonly) and other organs. People with 11q del are more likely to have a bulky node presentation - and that can become obvious in their neck nodes (glands) as they progress.
We need to be aware of the Streetlight effect: en.wikipedia.org/wiki/Stree... Even CLL researchers got caught out. Blood cancers provided the ideal cancer research tool back in the 70s, because it was so simple to monitor changes in the DNA structure of the blood cancer over time (clonal evolution) compared to monitoring solid tumours; a simple blood draw vs a risky biopsy. Through that research, very successful life saving chemotherapy treatments were developed. For a long time, CLL researchers thought that CLL cells sampled from the blood were representative of how CLL cells functioned in the nodes, spleen, bone marrow, but they hadn't appreciated that CLL cells are in a dormant mode in the blood and actively signalling to establish and maintain their supportive micro-environments elsewhere - not to mention causing our fatigue. CLL cells are extremely easy to kill in in vitro testing - checking for changes when you observe them through a microscope after exposing them to a trial substance. Success there unfortunately poorly predicts what happens when CLL cells encounter the same substance in their protective micro-environment. That's in part why in vitro testing is a poor predictor of human clinical trial success.
Attached: From your referenced study. A picture is worth a thousand word.
Neil
That is the figure I meant. Btw, the scale is linear, not log. The label log stands for logistical growth.
Corrected, thanks. I've included the first image of the "samples displaying: a, logistic growth (n = 43), b, indeterminate growth (n= 30) or c, exponential growth (n = 12)" from Extended Data Figure 2. Growth kinetics of CLLs from the extension cohort.
To the AussieNeil point about SLL presentation, my ALC on diagnosis was 5.6 and last week it was 1.7. My lowest was in September at 1.3, but my nodes are growing steadily. My bone marrow is 10% infiltrated.
Bigfoot
10% bone marrow infiltration is low, but that could a result of your SLL diagnosis, which starts in a node. Typically, with CLL, which arises in the bone marrow, newly diagnosed people have around 25% infiltration.
Neil
I was diagnosed in 2008 with Lymphs around 14-15 Over the next few years it gradually climbed to around 39-40 Then it regressed to the low 30s and stayed that way for about 10 years but in the last year it has gone up to 36 and then 40 on my 6 monthly blood tests. I am still symptom free and no enlarged spleen or lymph nodes but these are only checked once a year
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