WBC levels...

[kls13]

I was diagnosed with CLL last November, but have probably had it for at least 3 years prior after looking at past blood tests with my MD. When I was diagnosed, my absolute lymphocyte count was around 7K. Now, less than a year later my absolute lymphocyte count is at 16.5K. My MD was concerned since it had doubled, but he says my counts are still very low. I am concerned because I feel like my lymphocytes are increasing to about 1000 a month. What is everyone else's experience? Did your increase this fast? faster? Am I being paranoid? I am still waiting and watching. I am just curious when your doctor's starting treating you. What were the symptoms?

[Big_Dee]

Hello kls13

Sounds like you are in great shape. My first W&W was only 14 months and WBC was doubling every 2.5 months. I recall one month that WBC went up 52k and I am still here 5 years after being diagnosed with CLL and now undergoing second treatment. Good things going forward to you!

[Sushibruno]

hello kls13, treatment time depends on allot of things. Yes doubling, But it's not concerning if u double just once I doubled only once then stopped. Now if u keep doubling at every 6 months It's a diffrent story also treatment depends on your hemoglobin , platlets and other results trending in the wrong direction. Even though these numbers can go up and down for many years. Its when the numbers keep going down that the doctors watch you very closely. Good luck to you. Also your lymphocyte count will increase and even decrease like I said up and down. I went from a low number to 274,000 in 5 years. Im starting my first treatment soon.



[Sushibruno]

absolute lymphocyte count is not the same thing as white blood cell count. They don't start treatment based on your WBC Anymore.

[Newdawn Administrator]

Trends are what’s important kls and doctors rarely show much interest until the ALC (absolute lymphocyte count) reaches 30 and starts to consistently double every 6 months. Your levels are still very low and certainly not grounds for contemplating treatment. My ALC certainly increased more every 3/4 months than yours has in a year and I was on W&W for 7 yrs. If your MD suggests treatment based on lymphocyte count alone, you need to run to more specialist advice very rapidly!

Your presentation is actually quite slow particularly if you think you’ve had CLL for 3 yrs prior to dx. No need for concern based on what you’ve said.

Newdawn

[scryer99]

My 6 month progressions have been 5 (at initial diagnosis, had high-count MBL for all of 4 months beforehand) to 20, to 50, to 125. And still no firm treatment plan as of last week.

My personal experience has been that as things progress, numbers that seemed really big at the time tend to look pretty small in retrospect.

Treatment tends to be indicated more by "something else breaking" (spleen, lymph, platelets, RBC, weight loss) than by the number itself. It's more an indicator of how frequently they need to check the other stuff. And I am probably relatively close to initial treatment but that has more to do with platelets and spleen than the counts by themselves.

Hang in there. CLL is a complicated disease and the psychological impact of that is pretty large. It's hard to live in constant uncertainty.

[wizzard166]

Hey Kls13

I just replied to a very similar question in today's posts, so I'll copy my reply here:

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.

Carl

[FloridaGal2]

Hi kls13. My WBC and Lymph count are also going up...went from mid teens to mid 20s in 6 months. All other numbers are in range. I too am worried about the jump in numbers but reading the narratives of these “seasoned” CLL patients certainly makes me feel a bit better as well. I noticed several years ago my WBC count was trending high and mentioned it to my doctor but he wasn’t concerned. In Apr 2021 it was inceased with smudge cells present and he sent me to hematologist where CLL was confirmed. I’ve learned to listen to the experts and calm myself with their wisdom.

[MisfitK]

How do you feel? If you feel fine, you're doing completely fine in watch and wait. Your ALC count is a complete non-concern. As a previous poster said, most docs don't even blink or check rates in any serious way til your ALC is over 30K, unless you are exhibiting a lot of "B" symptoms (aka, my "how do you feel?" question).

For the record, since I just got my trend lines for my ALC this week, here are all my test levels since my official diagnosis (yeah, 6 week appts sucked in the beginning, but I fit the profile of someone who would "fall off a cliff" and then I didn't:)...

June 2020 (at my Primary Care) 7.5K

July 2020 9.36K

Sep 2020 10.05K

Oct 2020 12.05K

Dec 2020 10.74K (this one got me to 3 month appts vs 6 week ones

Mar 2021 11.16K

June 2021 13.92K (this was after Covid 1st shots)

Sept 2021 13.81K

Jan 2022 19.08K (this was after Covid boosters)

Apr 2022 17.61K

July 2022 15.46K

Nov 2022 18.36K

So, as you can see, it's easy to go up when it's low b/c it's an overall low number, but then, you can level out and just stay on a linear progression vs an exponential one. For me, my goal is to go to 10 years W&W, b/c in 2020, data said that was almost impossible for my markers and age, but it's good to set a goal you have to work for, when you put yourself on a really healthy lifestyle path, and still have kids at home:).