Interpretation

[jillybird13]

Hi .

I’ve had a letter through from my CNS ( I’m on treatment with O and V)

There are a couple of things I haven’t seen before and wonder if anyone can tell me in layman’s terms what they mean . I do remember at the consultation before I began treatment that the Consultant said I might not achieve full remission because of one of my genes …. I think . But I was like a rabbit in the headlights, not allowed to have anyone with me because of Covid so missed much of what was said

The ones I don’t understand even after Googling

ATM and TP 53 not deleted

lgHV unmutated

Clinically significant variant in SF3B1

Hypogammaglobulinemia

Any clever folk out there that can help please ?

[AussieNeil Administrator]

Thankfully, with the recent introduction of newer, targeted treatments like V+O, these test results are nowadays mostly inconsequential. Had you needed treatment a few years ago, your chances of a long remission would have been slim, unless your specialist first ran these tests and arranged a clinical trial to give you access to the newer targeted therapies. (Even on the FLAIR trial, you could have been assigned the older chemo control arm (FCR).

In detail:-

- ATM and TP 53 not deleted

That's a good result, because you need these present (not deleted) and without mutation in CLL cells. They have a very important role in triggering programmed cell death (apoptosis) when a dividing CLL cell's DNA gets affected by older chemo treatments - this is how they work. If you had deleted or mutated ATM or TP53, you would likely not do well on BR or FCR or other older chemo treatments.

- lgHV unmutated

This means you are likely to have a shorter time to your first treatment and you would be unlikely to have a long remission from older chemo treatments (BR or FCR).

- Clinically significant variant in SF3B1

This biomarker might have implications for how well you'll respond to venetoclax. I suspect this and perhaps your IgHV mutation status, is what your consultant was referring to in regards to your reduced chances of a full remission.

- Hypogammaglobulinemia

This is the medical term for low immunoglobulin/antibody (IgA, IgG, IgM etc) counts - part of why our immunity is compromised by CLL. It's common with CLL because (a) CLL cells inhibit the plasma cell (mature B cell) production of antibodies and (b) CLL treatments wipe out all maturing B cells, not just CLL cells, so we have less plasma cells for a while after treatment. Obinutuzumab knocks out B cells and new B cell production for a year or more after your last infusion, so you won't see these counts begin to recover until then - so meanwhile vaccinations and boosters will mostly work on improving just your cellular (T cell) immunity. If your IgG drops under 4 and you have severe bacterial infections, perhaps bad enough to land you in hospital, you would qualify for IVIG or subcutaneous IgG infusions to boost your immunity.

Neil

[jillybird13 in reply to AussieNeil]

Thank you so much , I understood exactly now . I wonder why the medical professionals can’t explain as clearly as you do ? I am not longer as fearful as I was about remission or not as the case may be