So we've had our second consultation, 5months after first and lymphocytes are up to 19 from 11 and wbc is at 25 from 14. Consultant didn't seem overly worried before wbc goes to 40 and lymphocytes to 30.
He suggests they might stabilise as first two years cll tends to try to find its way and not always fly up.
More interested in the low iron as hgb at 10.9 about to get first iron infusion now.
An Eric (I think) test is due back soon which is apparently better than a fish one.
Wife is very keen to be able to do something to fight it all, or at least have the feeling of fighting it which I can understand.
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NewCll
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Don't look at WBC, or percentages. Look at actual lymphocyte numbers, and neutrophils, possibly monocytes or other cells. There isn't a lymphocyte "number" that get treated. It's more like, how fast is it growing, are other things (neutrophils, Red Blood cells, hemoglobin, platelets) affected, and how you physically feel. But with your iron parameters tanking to needing infusions, you are looking at treating sooner IMO. Since most all our treatments can also afect these cells like the CLL itself does, giving yourself some space in case they drop further is a wise precaution IMO.
My understanding is that ERIC recommends specific types of tests, including certain flow cytometry ones, to improve CLL patient outcomes, I think these (flow cytometry) are often done first, before FISH. I think ERIC recommends a TP53 and IGHV mutational assessment before FISH.
At this point, optimizing your nutrient intake with a varied and balanced diet of pure whole foods, avoiding junk/processed/chemical stuff, and getting exercise will be the best things to do proactively. On top of doing an infection control risk assessment; do you have pets that you need to consider the dirt/germs they might bring into the house? Do you have a place to leave outside shoes/clothing to swap for "indoor only" items as you enter the house? Any air cleaners/sanitizers available, even if just for the bedroom? How will you sleep separate when one of you are potentially infectious, if this is even possible?
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Can someone help me to understand my blood results. Seems I will need treatment soon
Update #3 Treatment Begins
