How to understand prognostics...making me insane

[Sunfishjoy]

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.

[Hoffy]

Not Mutated is good. Unmuated is not as good .

Other markers seem better good,

Everyone is different though,

Be well,

Hoffy

[HopeME in reply to Hoffy]

Hoffy: If he is not mutated then he is unmutated which is less desirable. I think your comment is confusing the matter.

[Hoffy in reply to HopeME]

Good point - yes- you are correct, Too many double negatives ...

Thanks,

Mark

[Jemorgen]

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Forget what you’ve read online or even in the guides that were put out 2 yrs ago - they’re out of date.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.

[Sunfishjoy]

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.