When second therapy line will start?

[Taupe7]

Hello, my mother has CLL, diagnosed in November 2018, she was 62 years old. In was very fast, so she had Bendamustin monotherapy since April till October (6 cycles). She was in remission, ALC count and leucocites start to rise. In November 2024 ALC count was 10.54 (leucocites 13.5), now ALC is 18.7, leucocites 21.2.I attach blood test results.

She had one lymph node on her neck and one under arm (that one is small, haematologist does not always palpate that one, it grows and shrinks. She has ultrasound of abdomen in several days, and then visit to her haematologist. She has no B symptoms.

In my country Ibrutinib is available since last year.

She is afraid that she will needed nee therapy soon. She is very nervous, I don't know how to help her. Any sugestions?

[AussieNeil Partner Administrator]

The only blood counts that are really out of range are lymphocytes (raising the white blood count) and a slightly high glucose result. If your mother wasn't fasting before her test, that's probably not a concern. Ignore leukocyte (white blood cell) percentages, because they are distorted by the raised lymphocyte count, which is normal with CLL.

There is nothing in those results indicating your mother needs treatment. Her haemoglobin, platelets and neutrophils are fine and you say her nodes are small. It could be many years until she needs treatment. Lymphocyte counts can climb into the hundreds quite safely. It's how fast they climb, particularly when they are over 30, that is monitored. Doubling in under 6 months is what concerns doctors.

Neil

[Taupe7 in reply to AussieNeil]

Thank you, Neil. ALC count have doubled in less tah a 6 months, that's why she is worried. Everything else seems fine. Last time was the same, only ALC (nd leucocites) were rising very fast, and she is pale and exhausted.

[AussieNeil Partner Administrator in reply to Taupe7]

Her lymphocyte is only 18 and as I said, well below the threshold of 30, the point at which CLL specialists become particularly interested in doubling time. Good CLL specialists then look for confirmation from other indicators before suggesting treatment, so monitor more frequently.

Paleness can be caused by anaemia, but your mother's haemoglobin is excellent, particularly for someone with CLL.

Perhaps her regular doctor should look into other causes for why she's not feeling the best?

Neil

[Taupe7 in reply to AussieNeil]

We don't have CLL specialists in my country, onli haematologists. Thank you, Neil.

[NMgal]

Hello Taupe7,CLL and be a confusing disease! We've all experienced the anxiety and feelings of being overwhelmed at times. This site is a wonderful resource for those with CLL. I hope your mom has a good hematologist or CLL expert to rely on. It is somewhat strange to be told you have cancer and then you just wait around for treatment! That is the norm as I'm sure you know with CLL. Wishing the best for you and your mom, Lorna

[lankisterguy Volunteer]

Hi Taupe7,

As the other replies indicate, the ALC results are not used for starting treatments, whether the first or subsequent treatments.

The rising white blood counts ( ALC & leucocites) only indicate the "tempo" of the disease but there is no triggering number, and in my (No medical training) opinion, your mothers white cells are rising very slowly. As  AussieNeil says some patients have ALC 10x to 20x higher than your mother's results before they need treatment, but others need sooner.

There are many different symptoms that can indicate that treatment with ibrutinib/Imbruvica will help the patient by reducing those symptoms.

This pinned post healthunlocked.com/cllsuppo...

has several videos that explain all the variables that the haematologist and patient should consider. You may want to share some of them with your mother.

This video is my favorite: youtu.be/sPS9rE9Tfwo(Not working as expected?)

And since 2018 when Dr. Lamana recorded this, we do have data that shows patients survive just as long if treatment is delayed until symptoms drive treatment per: patientpower.info/video/chr...

Len

[CoachVera55]

Yes I agree with everyone, I don’t see signs of a need for treatment. Near normal bloodwork & small lymph nodes does not equal anything but Medication Break Continuation (2nd Wait & Watch). I feel that CLL is more of a mental game of knowledge; know your normal levels, know the progression, know the triggers & know how to stay away from the triggers.

I just know that my body is weaker than others & even weaker after 13 months of 1/2-1/4 dose of Zanubrutinib. I stay masked most of the time, I treat symptoms early with natural remedies & I hydrate/rest more. I eat clean & workout daily. Its something we have to live with but thank GOD we are living. Also there will be even better meds available when your Mom actually does need treatment.

She may need professional therapy, do whatever it takes to adjust because its not easy on top of everything else we have to deal with these days. #GODSPEED🙏🏾