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
Ldh 180
Additional info added by Admin;
13q is negative. 11q13 is positive. 11q22 is neg. WBC is 5.8
ALC 1.4 (hemotologist thinks I have SLL so blood would not be high); bone marrow biopsy indicated 40% cll cells
platelets 128
IGM is low 40mg
Mind you, this is from blood and bone marrow tests done by hematologist. But I am seeing two CLL specialists, one next week and one in July. I assume they will complete their own lab studies
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.
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Sunfishjoy
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It’s totally normal to panic when we see ourselves expressed as genetic markers Babs but yours are not too bad at all from the limited information available. Many on here would love that outcome! You’ve dodged the worst marker in 17p/TP53. That’s a positive! They don’t test them all which is why it’s never a complete picture on which we should plan our lives. There’s still questions to ask.
Ok so you’re unmutated but with the advent of new treatments, that doesn’t have the same negative significance that it once had.
We can’t change the hand we’re dealt only the way we play it so don’t let a set of numbers define you. There’s too much they don’t know and we are all unique individuals.
Not sure what you mean by ‘more vigilant observation’ Smakwater.
Unfortunately unmutated ‘cuts no ice’ in the U.K. They rarely test for it and don’t make treatment decisions based on mutational status. Quite wrong in my view but it isn’t given the clinical significance it deserves.
I see you’ve just amended that to 11q in which case I’d absolutely agree. Unfortunately that deletion wasn’t made known in the original post.
11q Deletion (del11q) Is Not a Prognostic Factor for Adverse Outcomes for Patients with Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma (CLL/SLL) Treated with Ibrutinib: Pooled Data from 3 Randomized Phase 3 Studies
Hi Scott...13q is negative. 11q13 is positive. 11q22 is neg. WBC is 5.8
ALC 1.4 (hemotologist thinks I have SLL so blood would not be high); bone marrow biopsy indicated 40% cll cells
platelets 128
IGM is low 40mg
Mind you, this is from blood and bone marrow tests done by hematologist. But I am seeing two CLL specialists, one next week and one in July. I assume they will complete their own lab studies.
It might be an idea to include the additional prognostic info you have on the post you put on the American site Babs because the detail above doesn’t give a complete picture on which people can reliably advise.
I’ll include it on here for you.
You can edit your post on both sites by clicking on the downward arrow next to ‘more’ on your post.
Beware of the do-it-yourself understanding of your results. I read my Zap 70 backwards somehow and had assumed a poor prognosis until my appointment with the CLL specialist who explained all to me.
What’s great to see is how thorough your hematologist is and the depth of the early evaluations. Treatment drugs and knowledge on trial results is positively changing the outcomes and choices. Having such a cooperative and willing medical team affects your outcomes and gives you knowledge and tools. Once you add a true CLL expert to the mix, a plan will take shape. Regardless of our markers, most of us, and seems including you, have a chronic cancer - better than an acute one by a million miles. You do not have an emergency on your hands. The number one side effect of SLL/CLL while its generally low-grade is psychological distress. This site has THE best folks. Stay tuned!
Thank you for your lovely and uplifting response. Yes, my hematologist has been supportive and kind. Yet I guess it will be the CLL experts who step in now. I do feel lucky to be facing this now when there are new drugs that seem to be helping so many. My daily drug right now is staying positive.
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Cll specialists
Bone marrow 
Still on hold for stem cell transplant
Scared !!! 
Ibrutinib plus fludarabine, cyclophosphamide, and rituximab as initial treatment for younger patients with CLL
