I have finished my infusions am I am just on venetoclax.
The problem is I am on a max dose of 200g per day rather then the 400g because my white blood cells count has again dropped and I am having to have three jabs per week of filgrastim (Zaria)to boost my white cells.
This is my third booster session.
My treatment is the one year time limited treatment. Has anyone any idea how taking reduce doses of venetoclax will effect my chances of putting the cll in remission at the end of the year.(48 weeks).
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Farleytiff
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Another member here told me her specialist once commented to her, that he had a number of patients on 200mg.
When cancer drugs come to market, it's with a lower number of patient trials than for something like a diabetes or allergy drug. So oncs often titrate the dose to effect, knowing that dosing recommendations haven't been gotten from thousands of patients .
Whether or not a dose that prevents severe neutropenia or other severe side effect but still will kill the cancer, is a patient specific type of thing. I've seen a few posts here about people who were on lower than 400mg who reached uMRD. I wish I had a better answer, but there it is. In the US some docs are doing MRD testing to guide treatment, IDK about the UK. MRD guided treatment is a new-ish concept, there aren't clear guidelines for exactly how to do it to get the "best" results.
The best centres in the UK with easy access to accurate testing are doing MRD guided Venetoclax treatment on bone marrow. However, for first line treatment with VO, I doubt that treatment would be stopped before the year is up unless the neutropenia was causing infections. As always it's about that risk/benefit balance and it can be tricky.
I never quite understand why some doctors lower the dose and some don't...I had the same problem, was neutropenic from day 1 on the same treatment. I stayed on a full V dose but had regular zarzio - quite intense in the first few months, then 1x a week and then 2x-3x a week towards the end as my counts dropped again. I was taken off them 1 month post treatment and haven't needed them since. My counts are all in a normal range. My CLL doctor never even considered lowering the dose, even though I had a few episodes of severe neutropenia...it's interesting how different doctors treat us differently, isn't it.
I am on Zarzio3 times a week. Just finished a previous treatment of Zarzio which I was on for 4 weeks 3 x per week. On 12/2 wbc 2.9, 11/3 6.4, 28/3 36.8. ! at which stage I came off Zarzio.
If you check the official sites, they include protocols for using G-CSF, adjusting the dose, or even temporarily withholding medication to manage cytopenias. It gets interesting when your treatment involves two or more medications and the manufacturer of one drug recommends using G-CSF shots while another drug manufacturer recommends drug dose reduction or temporary withholding their drug and not using G-CSF shots. That's where the experience of a CLL specialist becomes invaluable in recommending an approach they have found works best.
I would like to think that doctors are dosing differently because they are treating the individual according to all the factors in the individual treatment matrix that are not necessarily trial parameters. E.g, absolute fitness profile, co-morbidity and severity, body mass etc...
A contrasting example would be to compare a 40 year old person having a healthy diet, a high activity level, and no other health concerns nor on any other medications to an obese person with diabetes, hypothyroidism, poor diet, high blood pressure, low activity, and taking several related medications including an anti-depressant. Not to mention the male/female component.
I like the idea of individual treatment within a medical standard, however, it is a matter of earned trust knowing that doctors are human as well. This is one reason to consider pursuing knowledge relative to our individual condition and then self advocating respectively.
Science would like like to present itself most absolutely, yet, one has not far to look outside the box to know that it is a bit tricky to make such a claim.
Some of the best tasting recipes are a pinch of this and a pinch of that given the unsaid rule that everyone knows what a whole box of salt does to a pound of biscuits.
I agree with Smakwater, I have seen docs treating other cancers (not CLL but the principle would be the same) who vary the "standard protocol" based on something about the specific patient.
There's a fine line between giving the patient the maximum amount of medicine to kill off the cancer, without affecting the bone marrow/other cell lines disproportionately. Some patients have more marrow suppression or other adverse effects than others, it's hard to say exactly "why". So I've seen where a doc always tried for the higher dose, but if a patient couldn't tolerate it, the dose was lowered. The risk of resistance is higher with a lower dose, but if a patient can't tolerate it, that's what you have to do.
I think the younger patients, who overall have a more robust immune system, will get more of a "push" towards full dose, than someone who is older, or has other diseases, or something else going on such that they are having more problems on the higher doses. Someone younger like yourself, a doc will want to push hard to avoid resistance IMO. Someone who is in their 80's, and likely won't live another 40 odd years, the goal will be to back off the CLL enough so the patient isn't being affected by it. So an 80 year old having lots of cell suppression, has a better quality of life overall by cutting the dose such that any side effects are lessened. Whereas someone like yourself, pretty young, the goal is to tamp that CLL critter down as much as possible.
Treatment interruption for AE occurred in 134 of 194 (69%) patients, most commonly due to neutropenia (84 of 194; 43%), per protocol requirements. Treatment interruption had no impact on PFS or OS, regardless of duration. Dose reductions were required by 45 of 194 (23%) patients, but had no significant impact on outcomes. In MURANO, premature discontinuation was associated with suboptimal outcomes; venetoclax treatment modification was not.
There are dose reduction reports for BTKi drugs. The conclusion was that completing the first cycle was important. Once the receptors were occupied treatment was effective with reductions.
Phase 2 trial ReVenG started in April 2022 and is still recruiting. I've not seen any reports yet other than the trial design. Primary completion '25 and completion '27. Patients must have a minimum of 1 year progression free after EOT of 12 cycles V+O (minimum 9 months). Patients will be split into 2 cohorts. Cohort 1 for those with >=2 years progression free from EOT and cohort 2 for 1-2 years PF from EOT. Cohort 1 will get12 cycles, cohort 2 24 cycles, extended if dMRD at C15. As V+O is relatively new I expect that there will be few >3 years after EOT. This will recruit high numbers of TP53 and IgHV unmutated patients to the study and as all have progression free survival less than median results will be worse than real world. It's unlikely cohort1 will do better than first time but cohort 2 with longer time on Ven and MRD directed should.
As most if not all will completed the full 12 cycles of V+O on first line it's unlikely they will find problems with toleration resulting in discontinuation.
I am on my last month of V dosage of 200 almost the whole duration. I will have been on it for 16 months vs the twelve. So maybe expect to stay on it longer than the year they project. So far my labs have been great but we shall see when I get them done in July. Just hang in there Farleytiff ! 👍
I would hesitate to second guess doctors. I was restricted to 300 mg venetoclax during V&O treatment because of being on 2.5 mg bata blocker. My CLL Specialist insisted after me explaining that bata blocker was precautionary, that I go to 400 mg venetoclax. So there are dosage restrictions based on other health issues, however I also have very aggressive CLL and CLL Specialist may have felt I would not get to remission without 400mg dosage. I was taken off bata blockers due to having 28-32 BPM heart rates at about two months into venetoclax . But now that I have completed one year V&O treatment, my blood pressure is moving up beyond normal, back on bata blocker. So, a lot of things happening. Blessings.
In my first experience with V&O, I too had to go on a reduced dosage of V (25%). I did reach uMRD after a year. Unfortunately for me the remission only lasted 1 year. I then repeated V&O, but the second time it didn’t work and I am now back on my second type of BTIK blocker.
My experience has been more negative than most. I’m on my sixth season of chemo and fifth different chemo medication.
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Finished 1 year V&O
Rising white cells
MRD blood test after Venetoclax treatment 
Poikilocytosis and Burr cells
