Fluctuating Labs Post-Treatment?

[DRM18]

Hi everyone,

Just wondering: I've been done with O+V for around ten months now, URD-neagative thankfully, get labs done every six weeks, and ... seems like every time my labs are normal, the next time they're all lowish, then the next time they're more normal, then the next time on the high side of low, etc. And my ALC has never really broken away from the high side of low. No stability!

My doc says it's normal, to be expected, but hey, many of y'all seem more knowledgeable than him, hence this post.

Cheers!

--Dave!

[AussieNeil Partner Administrator]

Your ALC is on the high side of low because both venetoclax and obinutuzumab have eliminated your B cells in addition to your CLL cells, which is why you are unlikely to respond to vaccines for up to a year after your last obinutuzumab infusion. Venetoclax also knocks down your T lymphocytes slightly. CLL also can play havoc with your CD4:CD8 (helper:cytotoxic) T cell ratio and that can take a while to recover. I'm seeing the same pattern.

You can get a better idea of what's happening with an immunophenotype flow cytometry test, which should report your individual lymphocyte counts by type (B, T and NK).

What other labs are bouncing between normal and lowish? If they are in the reference range, or even if they are a bit below it, your doc's comment is correct. 5% of healthy people have good (for them) blood counts that are just outside the reference range, plus a complete response after treatment accepts that lower than typical results are still acceptable, e.g. commonly platelet counts can be safely lower than 150, though ideally above 100.

Neil

[DRM18 in reply to AussieNeil]

Thanks, Mr. Neil,

It's just my WBC, ANC, and ALC that fluctuate maddeningly. Platelets have always been normal, even during treatment.

I was only asking because, in early December, all my numbers (save the ALC) were good, only for me to learn, a day ago, that the whites listed above all dropped to high-low (save for the ANC, which is low-normal). Fickle!

But I suppose low numbers nearly a year after treatment are preferable to sky-rocketing numbers ...

--Dave!

[AussieNeil Partner Administrator in reply to DRM18]

Sounds typical behaviour . It's only when you have plenty of blood tests that you appreciate how dynamic blood counts can be, even over a day. That's why its best to follow a consistent schedule with sleep, exercise and diet, including drinks/hydration prior to blood tests and have your tests at the same time of the day at the same lab.

Neil

[Smakwater in reply to DRM18]

Although I cannot provide the biodata, nor am I saying anything relevant to someone else's individual treatment response, I can attest in laymen's terms to what Neil has stated.

The first two years post treatment, my labs show improvement and increased stability, however, during that time I would see occasional and unexplained odd shifts in the counts and more so with the white. I once had monocytes jump above 12% while everything else appeared normal? No fever, no other symptoms? - "Panic"! Then within 6 weeks they returned to normal. My labs last week (3 years post treatment) are all in range.

Even with the Big Dog Research Gurus, there is much yet to be quantified clearly.

Hope your trend continues in your favor!

JM

[DudeATX]

New to all this. When you say you have been done with venetoclax and obinutuzumab - I thought these BTK drugs where something we took until toxicity or they didn't work any longer.

[DRM18 in reply to DudeATX]

Hi Dude,

V + O aren’t BTK inhibitors; instead, the V + O protocol lasts for a year: around 6 months of mostly monthly O IV infusions, the rest of the year filled out with daily pills (V). The hope is, once someone’s been done with V + O for two years, should they need re-treatment after that two-year mark, V + O might be repeated.

Anyhow I’m just a nobody who underwent the treatment (successfully). Others here can give you a much more researched response.

Hope you’re doing okay!

—Dave!

[DudeATX in reply to DRM18]

Ahhh - ok. Still climbing the learning curve. Good to know. Thanks.

[DRM18 in reply to DudeATX]

Feel free to message me any time if you have questions!