Happy Friday!

[newcllgirl08]

I was going through my lab results from Wednesday while doing my usual chores at home. I have an appointment with my oncologist on Monday, and although he may have informed me about it already, I noticed that my WBC count more than doubled, and my absolute lymphocyte count went from 5.9 to 18.8. I am not sure if I am supposed to feel any better, but I definitely don't. I feel like I have other pressing matters to attend to, and I tend to focus on them because I feel powerless about my CLL. Thanks for letting me vent.

[gardening-girl]

Welcome newcllgirl, and Happy Friday to you! The Brukinsa that you are on is doing exactly what it is supposed to do! It is flushing lymphocytes out of your lymph nodes into your peripheral blood where they will slowly meet their demise. It may be awhile until you feel physically better, but at least you can relax a bit and let the Brukinsa do its job.

Best Wishes on your new job in Arizona* and keep us posted on your progress. Don't hesitate to ask more questions. There will be others greeting you with links to information that may be of help on your CLL journey.

gardening-girl in Tennessee, USA

*One of my sons lives in Arizona and we can't convince him to move back to Tennessee. 😢

[CycleWonder]

newcllgirl08,

I read in your bio that you recently started taking a CLL medication. Often, the lymphocyte count will rise when you start these medications because the lymphocytes are pushed out of lymph nodes into the blood stream. Mine jumped from 169k to 269k after 4 weeks, and then started dropping thereafter.

[AussieNeil Administrator]

Welcome to our community NewCLLgirl. Thanks for including in your bio that you have just commenced taking the BTKi drug Brukinsa/zanubrutinib. gardening-girl and CycleWonder explained why this happens and why it's a good sign that your treatment is working. I've included plots of how the Absolute Lymphocyte Counts changed in a number of patients staring on another competing BTKi drug, acalabrutinib. This unexpected behaviour caught the specialists involved in the early clinical trials of the first approved BTKi drug, ibrutinib by surprise. We even had reported cases of worried oncologists asking patients to stop taking ibrutinib when the oncologists hadn't read the early clinical trial reports!

As you can see, your lymphocyte count peak is still fairly small in comparison to most in the accompanying graph. With regard to when you can expect to feel better, BTKi therapies work slowly and it typically takes a year or so for most of the CLL tumour burden to be cleaned out and your spleen, nodes, bone marrow and any other impacted organs to recover. Side effects gradually wane year by year, with the exception of the risk of developing high blood pressure.

Track changes in your haemoglobin (for improvement in any anaemia), for when you should start to have more energy. The other important counts to monitor are your platelets (risk of bleeds) and neutrophils (infection risk).

Neil

The lymphocyte count often temporarily increases after starting on BTKi therapy.

[newcllgirl08 in reply to AussieNeil]

I was just shocked by how high my absolute lymphocyte count went after less than 30 days on medication. Oncologist checked my uric acid level to make sure it wasn't tumor lysis and the level was actually slightly lower than the normal, so I guess that's good. Seeing some people at 400+ makes me feel like I8.6 is nothing to be concerned with. Haha

[LeoPa]

I don't understand. You started taking Zanu, with an ALC count of 5.8? What was the reason for the start of the treatment?

[Skyshark in reply to LeoPa]

Numbers say it's SLL. Bio says reported one enlarged lymph node. Where there's one there's more.

[LeoPa in reply to Skyshark]

"Where there's one there's more." - was that confirmed by a CT or is that an assumption? I have one enlarged lymph node under my right jaw less than 1 cm long. It's been the same for the last 6 years. No other nodes were found so far.

[newcllgirl08 in reply to LeoPa]

Definitely confirmed by CT...hundreds of enlarged lymph nodes. I started taking Brukinsa because I had all or most of the B symptoms (severe fatigue, drenching night sweats are the worst of the symptoms). Diagnosis changes from SLL to CLL when bone marrow biopsy was completed and showed high level of lymphocytes. I was just shocked by how high my absolute lymphocyte count went after less than 30 days on medication. Thanks all for replying!

[newcllgirl08 in reply to LeoPa]

Definitely confirmed by CT...hundreds of enlarged lymph nodes. I started taking Brukinsa because I had all or most of the B symptoms (severe fatigue, drenching night sweats are the worst of the symptoms). Diagnosis changes from SLL to CLL when bone marrow biopsy was completed and showed high level of lymphocytes. I was just shocked by how high my absolute lymphocyte count went after less than 30 days on medication. Thanks all for replying!