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
Agreed Neil. My PB FISH last week didn't even find enough Trisomy12 to meet the cutoff of 7%. My specialist believes that will change when they run the FISH on the lymph node biopsy. In keeping with the heterogeneous nature of this disease mine is particularly nodal. Which is part of my frustration. Blood tests tell them nothing so I get CTs, PETs and biopsies. Bigfoot
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
4.8 to 7.7 in 7 years.
But that is not relevant for anybody else as we are all different.
I’ve always understood that CLL is heterogeneous- its patterns are peculiar to each of us. I believe that a cacophony of viral infections drove mine from virtually dormant to virulent in the space of a year or so. That’s my subjective understanding anyway.
With hindsight my CLL has flared up 3 years ago at the time of Covid-19. Coincidence or is there a connection?
That is interesting, I wondered if there are "triggers" than can cause a watch & wait to become active. Before I was officially diagnosed, I had severe night sweats, low grade fever 99.6-99.9 (mind you this is during COVID, so that was fun!), extreme fatigue and I had a chronic skin condition breakouts on my back, shoulders, neck and face. Was put on antibiotics, with no luck. Went to dermatologists for more antibiotics and had biopsy done to find out it was folliculitis. 2 years with this! Dermatologist wanted to put me on Accutane, which I finally said no, all the antibiotics were making my stomach nauseous I didn't want to deal with Accutane effects. It finally went away on its own. I just bathed in Hebaclense daily! Was the skin a trigger and the CLL be the reason why it lasted as long as it did? I know there are so many factors to take into account, it's just hard to wrap my mind around all the potential future issues. I guess that's the normal part of life, with an extra added pump in ours.
Early days for you Presto. As you will now appreciate, we are all different and it's impossible to project your future progression from someone else's historical progression curve, even if you share the same CLL cell genetics.
Incidentally, your particular version of trisomy12 seems to break the mold, in that "trisomy 12 is more often observed in CLL with morphologically and immunologically atypical cells, displaying CD5 negativity or FMC7 positivity and strong surface immunoglobulin staining; trisomy 12 is present in proliferating cells and seems to be associated with the absence of mutation of the Ig variable region genes" atlasgeneticsoncology.org/h... while, according to your bio, your trisomy 12 exhibits none of the above.
It could be that mutated IGHV and absence of "high risk" mutations will be the dominant factors in giving you a slow rate of progression and a long time to treatment. I hope so, but really it's far too soon to make a wish into a prediction.
Often trisomy 12 is only mentioned in passing in treatment guidelines. It is certainly not included in the CLL-IPI. According to my research (affected myself), trisomy 12 decreases the time to first treatment, but generally responds well to therapy.
pmc.ncbi.nlm.nih.gov/articl... (2018, so somewhat outdated)
Thanks for the reference Zweistein. I have no special knowledge about trisomy 12. You would probably benefit from chatting with healthunlocked.com/user/Sey...
I was diagnosed in 2012 with WBC of 40. It went up to 60 over the next 2 years. Then it suddenly dropped to the low 30's. It has stayed between 19 and 30 for the last 8 or so years, generally trending down slowly for the most part.
Good morning Presto51.... I've read all the replies to your question - and I think.... well, I must be stupid. I have no idea what my deletions are or trisomy 12 or any of that.. street light effects.. I guess my doc said that watch and wait for me is a long road.. Told me it would be good idea to get more exercise, eat healthy, cut back on the alcohol.. I was diagnosed in 2018.
I know that we are all different - but we do all have the same cancer, right? With all the data out there - there must be an average rate of increase to compare yourself to, right? To that end - I was diagnosed when my ALC was 20,000 and at my last check up in Oct 24, I was at 47,000. The first few years, count went up 4,000 each year.. and the last couple checks it is closer to 6,000 year. I'm 7 years on W&W...
Hope that your journey is similar - a long time on W&W. Take care of yourself... mental and physical..
What is tested depends on the treatment guidelines, which vary from country to country and also over time. My oncologist's laboratory is affiliated with a university and I believe that some parameters were collected for research purposes rather than because they have an impact on future treatment.
Oh.. and my counts have gone up consistently.. every check up it has been up..
After all, the increase is approximately linear and not (strongly) exponential.
Hello Presto51
My ALC was doubling every 2.5 months and never reversed or plateaued. Having said that, life is good I am on my 8th year since diagnosed. We are all different, I recall my WBC went up 52K in one month, stopped watching after that, more interested in RBC, hemoglobin and platelets. Blessings.
Hello, Presto51! My mother (68) has CLL. She have Bendamustin monotherapy in 2019, and she is was remission and sexond W&W since then.ALC went from 2 (2020) to 10.5 (now). Doctor waits until she needs new treament (in our country it probably will be Ibrutinib, that is new in our country).
She is diagnosed in 2018, I can't remember what was ALC count, only that her total leucocite was 200 (normal range is 4-10), but, she - as retired nurse (!!!), did not done her annual medicine check-ups for 13 years before that.
When will be the next treatment depens of ALC speed up, of B-symtoms, spleen, nods, and other blood counts.
Many people doesn't follow their ALC, just % limphocite, which is less important.
People on Healhunlocked knows and helps more that any doctor. I am happy because I find this site. You can ask anything, and someone hels you in a few minutes.
Diagnosed in 2015 with ALC 15. The highest was 22 in 2023 and lowest was 11 in 2022. The majority keep finding their way back to 15 where it is today. I'd say 15 is my angle of repose on the trend-line.
Fourteen years into my CLL journey, very slow progression, and in the UK we do not have the tests which are carried out in other countries which indicate in depth the likely progression type etc. Only when nearing treatment from high ALC count are appropriate tests done. So many of us are in the dark about our personal counts.
I have monitored my readings, so know in the blood a slow count increase was reduced temporarily by chemotherapy when I had ovarian cancer. My haemoglobin is trending down and likely to be causing me concern. which I will discuss with a new consultant as I have moved to a new area.
I know I have been one of the lucky ones, and have so much sympathy for the many companions to whom I am unknown on this journey, That we care about each other is what makes this site special to me.
Bubnojay
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