I was diagnosed last May. My blood numbers are not too bad. My concern is neutrophils. Started last May @1.9 and this Jan. was .9.

[Chicagogirl]

Do they ever recover or or go back to normal on own? My Dr says I might need some intervention if they drop <.5.

Thanks

[Cllcanada Top Poster CURE Hero]

Here is a good page that discusses neutropenia in CLL.

updates.clltopics.org/2058-...

[AussieNeil Partner Administrator]

Thanks Chris for referencing Chaya's topic on neutrophils. Chicagogirl, from personal experience, I can say that neutrophils may recover to some extent. Vigorous exercise can also boost them for a few days.

Neil

[Chicagogirl]

Thank you very much. Actually, I had read the CLL Topics article. Very informative. Doesn't indicate that neutrophils can rebound without drugs like Neupogen. As far as exercise, I am a runner (will be 64 in April) and ran marathons up until 2010 when things seemed to unravel. In hindsight, I figure I must have been developing CLL at that time and didn't get diagnosed until 2013. In any case, I still run but have not trained or run a marathon since 2010. I'm hoping that the running I still am able to do helps in all kinds of ways. I have not had any serious infection, but my neutrophils are averaging about a .1 drop per month. My next blood draw is in April. At this rate I will be around .6.

I understand this is not good and was hoping that maybe the neutrophil counts can go back up on their own. I don't get the feeling from your posts that this is usually the case. Thanks for the support and info.

[AussieNeil Partner Administrator in reply to Chicagogirl]

If you don't run regularly, l recommend you have your next blood draw at least a few weeks after a long run so that you get a better idea of how low your resting neutrophil levels can drop. That way your haematologist gets a better picture of your CLL and you'll know how seriously to follow protective behaviors when you are less active.

Neil

[Cllcanada Top Poster CURE Hero]

I think you need to get to the root cause... then decide where to go next... perhaps a bone marrow biopsy?

Here is an extensive website on Neutropenia

neutropenia.ca

You should also consider a Neutropenic diet and safe food handling practices...

upmc.com/patients-visitors/...

[Chicagogirl]

Thanks much for the suggestion about timing my longer runs. I'm a little worried about how low they might go anyway. I guess it would be best to get the most realistic picture. I asked my Oncologist about the .9 neutrophils in Jan. He hasn't seemed too concerned and hasn't recommended any lifestyle changes. His suggesting he might have to do something if they drop below .5 was the first sign he might be worried even tho I've neen "moderately" neutropenic since last fall. Have not had a BMB.

[Cllcanada Top Poster CURE Hero in reply to Chicagogirl]

I think you would be well served to see a CLL expert doctor sooner rather than later. Here is a list of a few.

cll-nhl.com/p/cllnhl-doctor...

[Chicagogirl in reply to Cllcanada]

Thank you very much for this. I plan to look into at least a "second opinion". I will also ask my oncologist more about his background and what he considers his specialty to be.

[Ernest2]

Many thanks for that everyone.

Interestingly I've just got two sets of blood tests that I think illustrate Neil's point.

About 3 weeks ago I had a really tough weekend helping a family member (with health issues) move home from one flat (top floor) to another (1st floor).

Professional removers, but you get to do the unpacking and all the other stuff of course.

Weds of following week (3 days later) bloods were:

ALC = 146, HG 14.1, Neutrophils 3.08 (thats in the healthy range for the Neuts of 2 -> 7)

The next w/e I took it easy ! (I will never move home myself)

Weds of the next week more bloods (I'll write another post on reasons for that hopefully in a few weeks) very similar as you would expect except for the Neutrophils:

ALC = 144, Hg 14.0, Neutrophils 1.49

So that's the drop you can get by putting your feet up for a week or two.

Only conundrum is to increase my exercise levels significantly I think I'd have to give up work (I needs lots of recovery time & sleep after the exercise I do get)

Many thanks,

Ernest

[Chicagogirl]

To Ernie,

Thanks for sharing that interesting experience with neutrophils. I had no idea what running might be doing to my numbers. Now I'm wondering if I should try to boost my numbers temporarily with a run for my next blood draw, or let them go to wherever they would normally go. I would like my oncologist to get an accurate read on my status, but I'm afraid I wont be able to get my numbers back up.

CLL is a tricky business ......

[Chicagogirl]

I apologise for the name change. Ernest, not Ernie.

[Ernest2 in reply to Chicagogirl]

Ernie is no problem at all.

It's time the name had a new lease of life.

Ernest / Ernie

[Cllcanada Top Poster CURE Hero]

I came across a few abstracts that may be of interest...

ncbi.nlm.nih.gov/pubmed/146...

ncbi.nlm.nih.gov/pubmed/125...

Full Paper

ajcp.ascpjournals.org/conte...

Full Paper

onlinelibrary.wiley.com/sto...

[Chicagogirl]

Thanks to all for the great info/advice. This is a work in progress. I am in the process of figuring out my status and what is appropriate for me. Your knowledge and experience are very helpful.

Ernest, appreciated your background story. Good thoughts going your way.