Watch & Wait-WBC & Abs.Lymph. Dropping Slowly

[Splash24]

Just curious, have many had WBC and Abs Lymph. counts continue to fall slightly over a period of 4ish years? Trying to get a feel for this. Thanks!

[cllady01 Former Volunteer]

Splash24, you have not shared anything about your CLL, if you do have information about the deletions, your WBC and ALC it might help others to relate to what you are asking.

It is not unusual for CLL patients on Watch and Wait to have blood levels go up and down if not stay the same all the time--considered stable if there is not large leap in Absolute Lymph Counts after they have gotten to a count of 30.

Do you know that you have full blown CLL or are your levels what is called a precursor to CLL, monoclonal B-cell lymphocytosis as described in the following link?

pubmed.ncbi.nlm.nih.gov/221...

[Splash24 in reply to cllady01]

Thanks for your reply, yes I do have CLL, I was aware that numbers do bounce around, I was just trying to get a feel for how common it is to have numbers reduce and stay there for 3-4 years.

[cllady01 Former Volunteer in reply to Splash24]

What numbers are you speaking of? Neuts? Hgb? that sometimes drop low and stay there and it is not unheard of for WBC and lymphocytes to drop from beginning diagnosis and remain lower than first read. CLL is an indolent cancer and very indolent in some--take it from one who has had that experience.

It would be interesting to have you share your experience with those numbers.

[LeoPa]

I don't think you'll find a case like yours easily. Whatever you do you're doing it right😉 Keep at it!

[JigFettler Volunteer]

Hey! How's Canada? I guess cold just now.I did W&W 3 years. My Ls went from normal when diagnosed... I had lymphnodes and normal bloods! ... to 86000 at treatment. But while doubling just under treatment level rate they did flip flop around. 60000 to 45000 once. I thought it was my clean living. 🤔 86000 at highest, 80000 on day of first FCR infusion.

Anyway yes they can, look for the overall trend.

What are your counts doing?

Jig

[Splash24 in reply to JigFettler]

Cold...yes, almost over though!! Thanks for the reply, mine went up very slowly, for 6 years, then down very slowly for 3 years, (WBC & Abs.Lymph) just trying to figure out how common this is or isn't. Obviously these are not the only things that matter, but curious about these.

[JigFettler Volunteer in reply to Splash24]

I am trusting that is a good thing, May I assume that your Hb and Pl are NOT dropping, and your Neuts are stable?

When i was diagnosed I stopped work, adopted the healthy lifestyle in all respects - made no impact on my CLL trending.

[ChristyAnne_UK]

I am 62, UK, W&W 7 yrs. Had phone appt with my haemo couple of weeks ago. She said my bloods were “remarkably stable”, and even lower than when I was first diagnosed. Stupidly, I forgot to ask for numbers this time, but they have always been very low.. barely into double figures. When I see people talking on here about WBCs in the hundreds of thousands, I feel like a fraud!

[Splash24 in reply to ChristyAnne_UK]

Good Stuff, congrats! Curious, have you ever had a bone marrow biopsy? That is the type of info I was wondering about. Thanks!

[ChristyAnne_UK]

Ah. OK. Nope. Just blood counts, so far.

[Splash24 in reply to ChristyAnne_UK]

I was just curious about the BMB, you provided me with an example (blood numbers) of what I was wondering about, thanks again!

[AussieNeil Administrator]

A while back, I read a paper which reported on the common paths followed by lymphocyte counts over time in watch and wait. A few times now, I wish I'd kept a copy of the paper, because I haven't been able to find it since. From memory, they are I think the exponential (familiar to most of us), plateau and sigmoidal paths. You appear the fall into one of the latter two.

Do you happen to know your immunophenotype flow cytometry test results, FISH or IGHV mutation results? You would likely be CD38 and or ZAP-70, negative, 13q del or normal karyotype and be IGHV mutated.

Neil

[Splash24 in reply to AussieNeil]

Neil, thanks for the reply, when I had my BMB(s)several years ago. I am in Canada and they did not do the Fish or IGHV, I remember reaching out to "our Chris" on this site and discussing it with him, it was he who suggested that those tests were not done here....at that time, I am not sure of the case now, as I just have my regular 6 month blood work done and that is it.

[AussieNeil Administrator in reply to Splash24]

Living in Canada, I figured that you might have trouble with the latter test results, but you should have your immunophenotype blood test results available to you, given they are the standard diagnostic test for CLL. I would also expect that this testing was done on your bone marrow biopsies (BMB), so you should be able to see if there have been any changes over time.

I would expect that like Australia, BMBs are not done without good reason outside of a clinical trial, so I'm intrigued why these were done. It might provide some more clues too.

[EugeneL2 in reply to AussieNeil]

Neil, I believe you were referring to this paper from Harvard pubmed.ncbi.nlm.nih.gov/311...

[AussieNeil Administrator in reply to EugeneL2]

Thank you! "We found that CLL commonly demonstrates not only exponential expansion but also logistic growth, which is sigmoidal and reaches a certain steady-state level."

Figures 1 and 2 include quite a few examples that match Splash's description.

Neil