I was diagnosed with CLL in early Dec 2023. I am not fully asymptomatic as one of my underarm lymph nodes is mildly enlarged. I also think I feel my spleen though it is considered of normal size per ultrasound.
At the time of diagnosis, my absolute lymphocyte count was 10.9K. At the 3 month follow up (March 2024), it was 10.5K (essentially flatlined). But now, at 6 month follow up (June 2024), it was 13.7K.
In addition, all the rest of my bloodwork was normal except for a borderline ferritin until now. My basophils are up from .1K/uL to .2K/uL (which in Kaiser is considered abnormal).
Here are my questions:
1) Is it most people's experience that lymphocytes climb unevenly (not necessarily linearly)?
2) I think I know the answer to this, but do lymphocyte counts go up and down in a year or over years? If so, by how much?
3) Could these changes in blood work be evidence of infection? I have had a lot of dental stuff to deal with, including the repair of an old root canal that had an infection. However, the endodontist said that this shouldn't cause an increase in white blood cell counts as it looked to him to be a localized, not generalized infection.
4) Do vaccines also boost lymphocyte count? I had my 2nd shingles vaccines, which was a butt kicker, in early May.
Thank you in advance.
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sleepyjean75
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You are asking the same questions I was when I was diagnosed. Someone once told me not to stress over the increasing lymphocytes as that is the nature of the disease, they will go up. It's hard...mentally, it's really difficult but it is a fact. I accepted it and made my peace with it, it didn't make it easier...your lymphocytes can bounce, 10 and 13 is more or less the same number. You could have a lower or higher number if you had another blood draw on the same day. Look for trends, not a one off reading. My lymphocytes went from 40K to 16K in a space of 6 weeks and from over 90K to in the 70s after a covid vaccine. I started treatment when they were around 140K and it wasn't the high lymphocyte count that triggered treatment but a failing Hb, enlarged spleen and reoccurring infections. CLL is such a heterogeneous disease that I would really advise you to focus on the overall picture - all blood numbers (lymphocytes, neutrophils, Hb, platelets), enlarged nodes, enlarged spleen, CLL related symptoms - night sweats, reoccurring infections, ...you are very likely to be in w&w for years...and yes, vaccines and infections can effect your numbers but your lymphocyte count will most likely continue going up. The slower, the better. I hope the pace of your disease is very slow. 🙏🏻
I’m new to the group and feel very on my own suddenly even though I’m surrounded by close friends and family. I’m 65 and was diagnosed 15 years ago. Have been tested every 3 months with no change and now suddenly my WBC has rocketed . Had a scan a few days ago. Waiting for results. Now losing weight and waking up with sweats , have a slightly enlarged spleen. Doctor said I’d be starting first treatment very soon . Difficult to know quite what to think and do. Shall I cancel all plans once treatment starts? Would really appreciate any advice as I don’t know anyone with CLL. Thanks
While you have only recently joined, I see that you have had a very long period in watch and wait, so now having to contemplate treatment has caught you somewhat unawares. One advantage accruing from your long watch and wait is that the new targeted treatments have a lower side effect profile than the treatments in use, back when you were diagnosed. When you learn of your recommend treatment, you'll be able to post and ask for others' experiences and search for them.
Thank you for that Neil, it would be good to hear how others have done with the first line treatment . Are you a CLL patient or a doctor (or both) ? It seems a very complex illness
CLL being such a heterogeneous illness, it can impact our health in many different ways. Many of us have maintained our HU bios, sharing our journey with CLL as I have done. Just select the avatar by a person's post or reply to read what they've shared.
Thank you I didn’t realise I could see peoples journeys . What amazes me is how many treatment options are available- sounds like you have been quite sick but it’s so good that the medics are still finding ways to help you. This gives so much hope . Thanks so much
Hi Dusty I've been on treatment for 9 months after a similar watch and wait. I feel much better with treatment almost a normal lifestyle with just a few annoying side effects. I'm on Ibrutinib and Venetoclax.Good luck with your journey
Thank you Tony- I’m pleased to hear this - so are you back to “normal” with your life and able to all the things you did before? I’m not sure if I should cancel social events, holidays, concerts (I’m a musician) etc once my treatment starts . Did you? How long will you be on the Ibrutinib?
Sleepyjean, your ALC results are remarkably stable! Causes of variation besides changes in your CLL tumour load and distribution are the time of the day, the impact of illnesses, vaccinations and medications and then there's the calibration and reproducibility of the test equipment. With a typical reproducibility of +/-0.5, count of 10.5 and 10.9 can be effectively considered identical results. Trends are what's important, including for your basophil count.
I've attached a sample of ALC counts for 21 early stage CLL patients.
Neil
Lymphocyte counts (ALC) vary considerably over time when we have CLL
Thank you, Neil. FYI, ALC did go from 10.5/10.9 to 13.7K. That was the concern. Still, the graph you posted still shows that level of variability to be typical in early CLL. Do you have any thoughts on the rise in basophils (.1K to .2K)? Do those also vary in this disease, especially if you've had a recent infection?
What's Kaiser's reference range for basophils? My lab has <=0.1 as the upper limit, so 0.2 isn't much above the upper reference limit. Certainly ask your oncologist about them, but perhaps it's allergy related? my.clevelandclinic.org/heal...
Remember, it's trends that are important with CLL.
Thanks, Neil. Kaiser's upper limit range is also .1K, hence the worry. But I do have allergies and asthma, so that is always a possibility. Someone mentioned iron deficiency as part of an elevated basophil. Do you know anything about that?
I haven't heard about iron deficiency causing basopenia. I would have thought that anaemia would be more of an issue if your body lacked sufficient iron.
Hello Sleepyjean, these are good questions. I think your questions can only be answered generally because cll is not like a lot of other illnesses that follow much the same course for most people. The course of cll can vary wildly among people, it can even vary greatly among people with similar genetic versions of cll.
In general terms, left untreated, most all of us will see our lymphocytes rise over time, our nodes grow over time, our hemoglobin decrease over time and our platelets decrease over time.
Generally speaking, people with 13 q cll will see changes happen slowly over many years while people with more aggressive cll, like 17p, will proceed to treatment faster. Exceptions to the rules are common with cll, by way of example I have 13 q cll that progressed rather rapidly with me, giving me but a 2 yr watch and wait.
The pace of cll can change as well. If one starts out with good genetics and slow growing cll, it’s likely to stay at a slower pace. Cll that grows rapidly will typically stay on that course. Once again, exceptions to the rules are very common, such that our cll can start out slow, but suddenly and with no apparent rhyme or reason, start to progress more rapidly. And it can slow down too, but thats less common Some people even report spontaneous remissions, I think thats quite rare though
Rapid progression is a relative term, even aggressive types of cll are typically much more slow growing than a lot of other type cancers. Most other cancer types dont allow for any watch and wait, treatment for most cancers can come within days or weeks of diagnosis.
Yes it’s possible ones wbc can jump with an infection, particularly at the low levels you describe. My wbc at diagnosis was something like 70k, so in my case an infection didn’t cause that. A vaccine can cause a wbc bump too.
The best predictors for you in your early stage as to how your Cll might grow would be your FISH status and IGHV status. People with 13q cll do better, on average, than people with other genetic versions of cll. People with mutated ighv cll are usually in watch and wait longer than folks with unmutated ighv cll. Good luck.
Thanks for this. Super helpful. As I understand it from my FISH, I am IGHV mutated without 17p but do not have the 13q deletion. I wonder if this puts me in a less predictable risk category. But still helpful to get the perspective that numbers change a lot even over short periods of time.
With respect to #1 & #2, please remember that part of the problem with CLL is that lymphocytes *don't die normally, they take longer than usual.* So for the 1/3 of us that don't get node or marrow infiltration, numbers may stay more or less stable. They may hover around one number, or fluctuate between 2. These people never end up getting treated.
So the point with these folk, is that their CLL variant dies faster than it can accumulate in large numbers. A number of us with CLL experience the opposite. The CLL not only rises in number, it starts infiltrating marrow or spleen, and with other cells being affected we need to start treatment, regardless of what the lymphocyte count is. Plus sometimes people like me, who generally accumulate cells faster than they die off with accompanying marrow infiltration, may experience a somewhat larger lymphocyte die-off occasionally.
#3, even normal healthy people may or may not have a rise in lymphocytes with a localized infection. No way to know ahead of time. It's often a rise in a subset of lymphocytes that indicates an infection, even if numbers are normal/stable. Same for #4. Some people get a rise in lymphs, with swollen nodes; others don't. It's probably more helpful to start noting how you, personally, react to vaccines or when you get a cold or other viral illness, let alone bacterial infection. Changes from your personal "usual" can be more significant.
P.S. Many people react to the shingles vaccine, CLL or no.
Thanks, SofiaDeo. This is super helpful information. I have noticed that I get swollen lymph nodes when getting vaccines now. In retrospect, it was probably an early symptom of the CLL before I knew that I had it. It didn't used to happen in the past. That and a few other things lead me to believe that I had CLL for 2.5-3 years prior to diagnosis.
But I think most helpful is to conceptualize the changing numbers being a part of the cell accumulation v cell death process.
Your doctor will be looking for doubling over six months. Counts can vary due to infection, and also differences in the machines that measure the count. Unfortunately with CLL there will be upward trend, but it can be a very slow process. The fact you have swollen nodes shows there is progression of the disease.
For what it is worth, my shingles vaccine sent my ALC up roughly 25-30% in the month or two after I received it. It settled back down afterwards and never reached those high levels since.
Super helpful to know. I figured it could possibly part of the vaccine given the swelling that happened in my lymph nodes post-vaccine, but I had no idea it could go up by 25-30%!
Good morning. In May of 2016 my Lymphocyte count eclipsed the 5000 B cells per ul and my wbc was only 9.7. Technically I had CLL; however the DR said we didn't need to do anything yet. I had not found this site at that time so I didn't have access to all the expertise that makes this a fantastic place for technical and emotional support.
Not knowing very much at the time and having had cancer 20 years earlier I decided to go to Moffit cancer center and see a specialist. So 6 months later I go to Moffitt and they of course redo all the tests. The specialist walks in and says I had MBL not CLL because my B cell count dropped below 5000 and my wbc was only 8.7. So yes your counts will fluctuate but everyone is different.
I then began watch and wait. I went to a hematologist and we did blood tests every 6 months till 2022( 6 years). What I learned during this process was they focused on my hemoglobin and my platelets. I returned to Moffit for a second opinion in Nov 2022 . My wbc was 20.5, my platelets were 112, my HGB was 11, my spleen was enlarged and I had swollen lymph nodes.
My bone marrow infiltration was 80-85 %. The specialist at Moffitt and my hematologist said it wasn't time to start treatment. I'm freaking out now. I remember the specialist at Moffitt telling me he had patients with their wbc over 200,000 and they weren't in treatment. Bottom line -their are many factors in deciding when to start.
In my case it was 7months later. (JUNE 2023) My WBC was 31,000, platelets 77 and HGB was 9.3, bone marrow infiltration was 90-95%. Started V+O treatment. Now in June 2024- wbc 6.0,platelets 219 and hgb 12.6. My experience with this treatment was phenomenal. We will be testing for remission later this fall . Good luck to you . Remember 35% of the people technically having CLL never need to be treated.
Hi Rico49, thanks for sharing your story. I wonder about the statistic that 35% of people never need treatment. Does it apply to younger folks? I would think that because CLL is often a disease that people get in their mid 60's to early 70's, it is true for this demographic that they will never need treatment. However, for the younger ones of us (I am 48), I find it really hard to conceptualize never needing treatment. But I do remain optimistic about the medications and the possibility of a "cure" for some.
I watched a video on you tube from the specialists at Dana Farber that covered the 35% but haven't been able to find it . I did do an AI copilot search and this is what it said.
"Yes, indeed! Approximately 35% of people diagnosed with chronic lymphocytic leukemia (CLL) never require immediate treatment. If the CLL doesn’t cause symptoms and doesn’t show signs of progression, doctors often recommend watchful waiting instead. This approach involves regular monitoring with blood tests, but no treatment is administered until necessary. So, some individuals with early-stage CLL may never need treatment for months or even years3. " Hopefully that will be you.
The problem is they don't know who's in the 35% pool! There are so many advances in this field with new drugs. Two have come out since I started watch and wait in 2016. I expect AI to improves things even more.
I asked my hematologist what options I have if mine comes back. He said I did so well that I could actually have the same treatment. Hopefully my remission will stay around 3-4 years. I'm 75 and back to better blood than I've had in years.
No, the 35% really doesn't apply to younger folks.
And it makes sense why -
1. We developed cancer far earlier than someone diagnosed in their 70's/80s, so we are more likely to have a more aggressive type of cancer than the norm for any type of marker.
2. We have WAY more years to live, so if your genetic marker profile wouldn't normally need treatment for 10-15 years and you're 40 vs 80 at diagnosis, well, statistically, the younger person is likely to live to need treatment and the older person is not.
So, if you are diagnosed under 60, you more likely than not will need treatment before you pass if you live a normal lifespan.
If you are diagnosed under 50, you are almost certain to need treatment before you pass if you live a normal life span. That treatment may be a decade or two away, but it's likely to arrive.
If you are diagnosed under 40 and you never need treatment, you should play Powerball.
You are one of the lucky ones, your absolute lymphocyte count is stabilizing and increasing very slowly. It is all about the blood result trends. I have very aggressive CLL and my absolute lymphocyte count never stabilized and graph looked like a hockey stick, 11K to 200K+ in 14 months. Blessings.
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