Understanding prognosticators early on - CLL Support

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Understanding prognosticators early on

Sunfishjoy profile image

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.

16 Replies
Newdawn profile image
NewdawnAdministrator

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.

Best wishes,

Newdawn

Sunfishjoy profile image
Sunfishjoy in reply to Newdawn

Thanks Newdawn...much appreciated

Smakwater profile image
Smakwater in reply to Newdawn

Although less concerning statistically in recent study, Cd38+unmutated+13q would still be a motive for vigilant observation.

Smakwater profile image
Smakwater in reply to Smakwater

Sorry,meant 11q.

Newdawn profile image
NewdawnAdministrator in reply to Smakwater

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.

Regards,

Newdawn

Sunfishjoy profile image
Sunfishjoy in reply to Newdawn

But if I am to be treated there’s a bright side:

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

Newdawn profile image
NewdawnAdministrator in reply to Sunfishjoy

Absolutely Babs! 😊

Ibrutinib has been an absolute game changer!

Newdawn

Smakwater profile image
Smakwater in reply to Newdawn

Not sure myself, as no cll diagnosis should be observed casually.

Thanks for the spanking. Sometime I get to big for my britches.

Newdawn profile image
NewdawnAdministrator in reply to Smakwater

Lol!

No spanking intended! 👋

Newdawn

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.

Thanks for asking!

Newdawn profile image
NewdawnAdministrator in reply to Sunfishjoy

Oh you didn’t make reference to 11q on your post Babs. I’ve edited accordingly and you need to check that out with your specialist.

Do you have particularly bulky disease?

Newdawn

Newdawn profile image
NewdawnAdministrator

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.

Regards,

Newdawn

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.

Sunfishjoy profile image
Sunfishjoy in reply to lexie

Good advice. A little knowledge is dangerous and keeps me up at night!

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!

Sunfishjoy profile image
Sunfishjoy in reply to Billhere

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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