I've watched all the videos on Patient Power and Cll Society. I've read what I can. And now sifting through my initial blood test results is alarming me. Mind you now I haven't even yet seen the specialist--two top specialist appointments are scheduled over the next three weeks--and I don't know any staging or details but here's what I know from hematologist report:
No tp53 del
no 17P del
IVGH NOT mutated --ugh
no trisomy 12
positive for cd38
neg for cd49d
beta 2 micro was 4 (that's high!)
no info yet on zap 70
So as far as I can discern this is a mixed bag so far of good news and bad prognosis, i.e. meaning I might be in for an aggressive progression. I suspect I should calm down and wait for the experts to complete this mosaic and interpret it all for me. Meantime though, would be grateful to hear what you all know about these markers and also how you stay positive and calm when the results are disappointing.
Written by
Sunfishjoy
To view profiles and participate in discussions please or .
Hey Babs - this world is changing so dramatically that those prognostic indicators just don’t have the same meaning as they did even a year ago. The novel agents have upset the prognostic and survival statistics beyond belief.
Forget what you’ve read online or even in the guides that were put out 2 yrs ago - they’re out of date. Try thinking of those markers simply as a guides to choosing treatment - not survival. Things are looking up in the treatment world my friend and we’re fortunate to be riding the wave.
People are now surviving longer than ever before - even people who are 17p- and unmutated. Before I was diagnosed I used to say I’d live to 97. Now I say it’s probably more like 93 lol.
Update: I’m being tested and screened by two cll specialists and the early results suggest I do not have cll. But no idea right now what I do have. Maybe another b lymphoma like mzl or lpl. I am three months now down this rabbit hole of seeking a diagnosis and as bewildered as when I began. Blood tests at four labs at four different nyc hospitals yielded four different lymphocyte levels. I feel good but still get low grade fevers most days. One doctor thinks I have a tick borne illness that would explain enlarged spleen and fever. I wonder if anyone else has had this issue.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
