I was diagnosed back in late 2018 and have been on a W+W approach till mid-this year when my doctor suggested we start looking at treatment due to my lymphocyte count (just under 400). Thankfully, other than a slowly progressive increase in fatigue there haven't been any visible symptoms.
After considering the viable options based on the cytogenetics, we are going with an Obinutuzumab & Venetoclax one-year treatment plan. My doctor initially had me take a low dose of (50% normal) Chlorambucil for a few weeks to bring down the lymphocyte count into the low 100s.
I have had my first two weeks of Obin (100/900 mg & 1000 mg) and had a question which I haven't been able to find answered online anywhere else.
After the first week of the Obin infusion, my CBC differential showed that my lymphocyte count was below normal (for the first time in over five years) along with neutrophils and monocyte reduction below the lower level of the range.
Given this, what would be the reason to have to continue the infusions for the remainder of Cycle 1 and later the monthly Cycle 2-6 instances? Wouldn't that just end up further pushing me into cytopenia?
Thanks!
Kiron
Written by
kbondale
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That was really the driving factor. While I had some swollen lymph nodes, they were all pretty minor and there were no other physical symptoms. Of course, thanks for the high levels of lymphocytes, my hemoglobin and platelets were somewhat below normal.
No worries - yes, my hematologist has many years of experience treating patients with CLL. While my counts weren't doubling in six months, they had in one year and I'm assuming with the reducing hemoglobin, platelets and increasing LDH she felt the time was right.
I am a distribution outlier as I was diagnosed when I was 49 (I'm 54 now) and in good physical condition (no comorbidities) so that likely also influenced the decision.
Longer remissions from treatment are achieved by eliminating as much of the CLL tumour burden as possible. That's measured by looking for zero CLL cells in 10,000, 100,000, etc, white blood cells, which is designated as undetectable Measurable Residual Disease (uMRD4, uMRD5 respectively). To get down to these levels typically requires a full year of venetoclax and 24 weeks of obinutuzumab infusions (9 in total). CLL cells in your blood are quickly killed off by treatment, but in the nodes, spleen, bone marrow and potentially other organs, CLL protects itself by setting up a nurturing environment. Hence it takes up to a year or even more, to kill off pretty well all the CLL.
Cytopenia is a common effect of all CLL treatments and should be carefully monitored and managed by your specialist. Should any blood counts get into risky territory, they are managed by a combination of dose adjustments, delays in infusions, platelet and packed red blood cell transfusions for thrombocytopenia and anaemia respectively and G-CSF injections for neutropenia. The iwCLL and similar guidelines set the time to start treatment based on minimising the likelihood of requiring those interventions.
I came down to "normal" on first infusion of Obinutuzumab and have been "normal" through to start of cycle 8. I didn't have any prelim treatment.
Like you, I do wonder what the next 7 infusions actually did. It's possibly a hang over from tests for monotherapy or Chlorambucil + Obinutuzumab. Costs a lot of money to trial a different regime and they wouldn't sell as much!
Your bloods will likely stabilize once the O is done and you finish out the V. I was part of a trial and was stopped at 9 months. I am 2 years out from obtaining UMRD status and it's like I never had the disease. Just keep your eye on the prize.
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