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 ?
Written by
jillybird13
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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.
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
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