When my 46 y/o husband was diagnosed with CLL in March, 2005, the oncologist told us "the average" CLL patient can go 10-15 years post-diagnosis before needing to start or even consider treatment beyond the "watch-and-wait" phase. And when treatment can't be prolonged anymore, it's usually due to one or more of the following: WBC is >/= 100,000 and remains consistently elevated above 100,000(vs the back-and-forth/rise & fall pattern); the spleen &/or lymph nodes are enlarged/enlarging; patient c/o new-onset fatigue &/or night sweats; and/or other specific blood tests show abnormal results, such as: low RBCs, which indicates anemia, or a low platelet count(aka thrombocytopenia), which puts the patient at greater risk for bleeding & bruising. Additionally, abnormal results of either or both of these 2 tests could signify progression of the leukemia & that it has "taken over" the bone marrow, thus compromising the marrow's ability to produce normal components(such as platelets or RBCs) while also pushing out the ones already there.
BUT!!!!!! Now that I've mentioned all of this, you can't live-and-abide by it, either, because each patient & situation is different. Also, there are specific staging systems (like Rai & Binet) & other diagnostic tests(bone marrow biopsies & aspirations, for example) that help oncologists decide when is the appropriate/necessary time to begin treatment and which treatment will be the most effective or best course of action for the specific patient & their leukemia.
Going back to my husband, he is 3 years, 2 months post-diagnosis and wound up having to start chemo in February(2008) because of enlarging lymph nodes; an enlarged spleen, which was & still is easily palpable; & increasing fatigue. However, on the 1st day of the 1st chemo treatment(2/4/08), his WBC count was only in the 50,000 range. This is why I heavily stress that every patient's situation is different and, therefore, you can't always go by "the average" patient theory. My husband & I did....until January(2008), when we were told by the oncologist that it was in my husband's best interest to begin chemo ASAP. Nothing like having the floor ripped out from beneath you at, what you're expecting to be, a "routine" 3-month appointment(as if any oncology appointment is ever "routine").
I thank you for your comments . I believe I had been suffering the effects of CLL for about the last 7or 8 years,I was working a very hard labour type job in the Building industry and just thought I was getting to old and perhaps not eating right,but during the last year I was falling to sleep during my lunch break or going home at 2.30 and falling asleep when I got home.I decided to take some time off and travel through Europe for 3 months and while away I noticed that my backpack would leave me with shocking bruises that scared the hell out of me ,they would bleed and take a long time to go away.It was then I decided to seek some help and was diognosed with the CLL. I wish you both all the best.Dennis Hughie-Williams,Perth w.Australia
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