What can cause some with extremely high ALC/WBC counts to continue on 'watch and wait' while others with relatively low #s need treatment?

[gemit2000]

I've read a few posts describing how one's 'watch and wait' status may continue even as lymphocyte and white blood cell counts climb into the hundreds (i.e., hundreds of thousands) while others registering a fraction of this may need treatment. However, I don't understand the physiology behind such paradoxical occurrences. What allows a body to tolerate such high leukocyte numbers yet avoid node enlargement, fatigue, night sweats, anemia, thrombocytopenia, frequent infections, autoimmune disease, etc.? Can prognostic tests differentiate between those whose disease as well as numbers will likely remain stable for long periods vs. those whose disease will likely remain stable while their numbers, however, continue to grow to "extremely" high levels?

[Newdawn Administrator]

Hi Gemit,

I found this article from Dr. Jeff Sharman really helpful in explaining these issues. His other blog articles which you can click onto from his page are very enlightening too.

cll-nhl.com/2012/12/when-to...

Newdawn

[AussieNeil Administrator]

Gemit2000, that's a very good question! If only we knew! You've probably noticed that unravelling the influence of the different genetic lesions behind the development of CLL and the resultant complexity in how it presents itself and progresses is still a developing science. The quick answer is it depends where the cancerous B-Lymphocytes prefer to congregate and how actively they interact with other body processes. If they just collect in the blood, then the patient may be able to get to high ALCs without needing treatment, especially if there are no auto-immune complications. If they congregate in the spleen or the bone marrow, or in growing nodes in critical places then you'll start to see symptoms that eventually warrant treatment. (This is appropriately reflected in the staging criteria for CLL and SLL.) The causes of fatigue and night sweats don't appear to be well understood, but it seems the messenger proteins (cytokines) between B and T lymphocytes, etc are behind these symptoms.

Neil

[gemit2000 in reply to AussieNeil]

Given that no one knows, that's a very good answer!

Looking back over the 3 years since my elevated numbers were discovered, I see that my ALC is now about 2.5 times higher while it's been a year since my first swollen node was discovered which was and still is less than pea-sized ( BB sized?). Meanwhile I have no other symptoms. This still leaves me wondering what "type" I am and hence the question.

Im still hoping that I'm the type who has many many years before treatment is needed no matter how high my ALC count goes so that when the time comes there is some non-cytotoxic oral therapy combination that has replaced FCR as the approved gold standard.

Thanks for all the time you spend sharing your expertise.

Gene