This is a follow-up to my last question about taking 200 mg of venetoclax instead of 400 mg. Some people stopped at 200 mg because their counts were good.
If you are happy with your current dosage on venetoclax, I am wondering what is the value of your lymphocyte count? Mine is around 0.65-0.85, but that seems low to me.
Keep in mind the following:
1) Your lymphocyte count is the total of healthy T-cells and healthy and cancerous (CLL) B-cells. All CLL treatments currently available, destroy both CLL and healthy B-cells, as researchers haven't found a way to just target CLL cells. That's why it is possible to have a lower than healthy normal lymphocyte count during and after treatment for CLL.
2) The tumour burden in your blood lymphocyte count is just a fraction of your total tumour burden. CLL cells are distributed via our blood circulation throughout our bodies. They tend to accumulate in our nodes, spleen and bone marrow and less often elsewhere, primarily in our liver, but other organs can become infiltrated too, such as our kidneys.
Neil
Your doctors are probably very happy with this count because it means that there are very few or even possibly no CLL cells in your blood at the moment. To be honest most of your non CLL lymphocytes probably weren’t working that well even before cytotoxic treatment started.
The main measure of lymphocyte function is actually your antibody level (IG level) and if that is too low and you are having infections IVIG may be helpful which some people need even before treatment. Also they may measure your CD4 lymphocyte levels as if they are low that can indicate it’s a good idea to continue on antibiotic prophylaxis.
As AussieNiel said the benefits to us of having lower levels of CLL cells generally outweigh the problems associated with lower healthy lymphocytes.
There’s even some data that at least for post FCR testament a lymphocyte count of less than 1 is even associated with a longer remission and better overall survival.
What is your count?
It varies between 0.1 or 100 and 0.7 or 700 and has done for the last 8 months ever since my first dosing cycle of FCR. I was at 95(thousand) and doubling every three months before I started.
The data suggests That if I can get to theee months post the final FCR and still be under one that makes for a better prognosis for a longer remission. Got to two months so far...
I know it will almost certainly come back (I’m unmutated after all) but why couldn’t I be one of the lucky ones for once?
On Venetoclax since December 2017, as well as Ibrutinib. My ALC is 0.80, WBC is 4.1. Doctor is pleased.
BeckyL USA
Thanks for the reply. Do you take 400 mg of venetoclax and 420 mg of ibrutinib?
I plan to add calquence, which would be similar to what you are doing.
0.8.
My blood count results always reference the normal range for lymphocytes which is between 0.8 to 4.0. So you are at and below the lower end.
I am on the daily 400mg dose of Venetoclax. Having issues with Neutropenia so the highest my lymphocytes have been for sometime is 0.26.
What happens IF you break a venetoclax tablet before you swallow it?
Venetoclax and low white count
Starting Venetoclax mono on Monday
1st week on venetoclax - WOW, not what we expected...
massive fatigue with ventoclax
