[ Dx 2013, 13q, mutated, basically asymptomatic]
Sept lab results were personal worsts (both red & white enough to make one blue). ALC near 100K, RBC, Hgb, & Plt all abnormal for 1st time. But it was the anemic hemoglobin # (by which I mean the # indicated I was anemic), that seemed to trigger the decision to treat ( 2 yr fixed duration VenG); HGb had gone from 13.2 in June to 10.0. They say a drop of .8 is cause for alarm so this being 4x that seems more like it was a 4 alarm fire (or an alarming lab error).
Yesterday I took tests prior to Tx - Haptoglobin, Coombs, & Hep B came back normal & could say the CBC was normal too or back to my old abnormal normal resembling results from all the other tests in the last year or two. My Hgb is back to 13.8, right where it was hovering since 2016. The one outlier now is the one being used as the basis to start Tx.
I'd been fully accepting of the decision to start Tx, especially liking this powerful V+G combo that might free me from the land of the immunocompromised (& from that 'kinky" feeling of being 'so tired, tired of waiting, tired of waiting'). And Tx would fit quite nicely into my new empty life of Covid. In the past I surely would have resisted the decision to treat based on 1 test (happened in 2014 when told I should start Tx due to my ANC going from 4.0 to 1.0; never saw that doctor nor a an ANC of 1, 2 or 3 again). But now I'm kind of feeling if the doctor reverses his Tx decision, I might resist that!
Whether to treat is my new day old question. My original (week old) issue I planned to ask here was if I should insist on genetic testing. I explained to his office what I knew about the importance of at least a 2nd FISH, but they said the doctor said I didn't need them. I linked them to the CLL Experts on CLLSociety.org's "Test Before Treat" page - cllsociety.org/2019/11/expert-cll-doctors-speak-out-on-test-before-treat/ - where elite CLL doctors gave testimonials in universal agreement that everyone starting a course of Tx for CLL does need them.
However I did note these recordings were made at the Dec '18 ASH and wonder if they are still appropriate. Seems to me the tests main purpose is warn patients off chemotherapy if tests show new abnormalities. But what if chemo was not going to be a Tx option. It wouldn't be for me. So if I'm to be treated, whether now or later, is my doctor correct that since I'm headed for VenG, genetic testing would be unnecessary?