I am taking venetoclax, and after inoculating up to 400 mg, I reduced the dose of venetoclax to 200 mg due to neutropenia.
Even so, neutropenia did not improve, so I stopped taking the drug and injected G-CSF. It's been a week since I started the injection, but I haven't seen any improvement in neutropenia.
I have already been treated with Ibrutinib, and my doctor has told me that if neutropenia does not improve, I should transplant it.
If you have such experience or knowledge, could you give us some information?
In my country, CLL has few cases and the experience of doctors is not high.
I want to be convinced even if I do a transplant, and if possible I want to extend the transplant.
I would be grateful if you could get the information as soon as possible.
thank you.
Written by
mogemoge
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Table 4 of this publication by the producer of venetoclax/Venclexta describes the process for managing stage 3 (neutrophil count under 1.0) or stage 4 (neutrophil count under 0. 5) neutropenia. It can sometimes take a few days for G-CSF injections to work.
Note that it can take 10 days to respond if your bone marrow totally stopped making neutrophils. That's because it takes that long for them to mature sufficiently to leave the bone marrow once your bone marrow restarts making them. If you don't see an improvement after 20 days, your doctors may need to follow the protocol in table 4.
Also make sure you are eating extra protein & other vitamins/minerals, so you have plenty of nutrients around to make those neutrophils. A few people here are on 100mg of venetoclax daily because of how it is affecting other cells. If the drug is otherwise working, this is an option. Unlike many other drugs, the study used to determine venetoclax dosing has much smaller numbers of people in it. So the confidence that 400mg will be needed for everyone is not as high. And if you are taking any other medicines that are metabolized with liver enzymes, that can potentiate the effect of the venetoclax.
My husband has been on Venetoclax (combined with Azacitadine 1 week per month) for AML and the drs (Oxford group) have gradually been reducing the length of days per month on this drug because of neutropenia and subsequent infections of patients - from every day to 14 days per month. Even with GCSF it has taken my husband sometimes 4 weeks or more to regain neutrophil production. So don’t panic but take every precaution to avoid any infection or illness whilst you are neutropenic.
My husband is severely neutropenic (below .5 for neutrophils and 1.0 for WBC) and he has been given Granix shots regularly.....his doctor reduced his Veneteclax to 200 mg.....nothing seems to help but we are being very careful about infection....of any kind....His doctor says he may have developed an auto immune disorder....he has a CT scan in a day, and bone marrow biopsy in 2 weeks...hopefully V and O has helped with the CLL because being neutropenic has reduced his lifestyle completely
Having Anemia and fever substantially add to the conversation, yet knowing this, I would encourage you to bring this to the attention of a specialist as soon as you can. Depending on what country you are in, it may be more challenging for you, but please try and get a qualified specialist to coordinate an evaluation of Venetoclax influenced neutropenia coexistent with anemia and fever.
You may even try to have an email conversation with someone through cllsociety.org to get some ideas relative to your geographic location.
I would not be surprised to find out that your venetoclax prescribing doctor alter your dose or schedule.
Or better still a haematologist with a focus on CLL, as haematologists specialise in blood conditions, whereas oncologists focus on solid cancers. There are also haematologist/oncologists.
For some reason, people in the US are more likely to see an oncologist for their CLL, whereas in most other countries, they would see a haematologist. It's rather strange, given the annual ASH conference, put on by the American Society of Hematology, is often where major announcements about improvements in CLL management and treatment are made, as it is probably the biggest international conference venue for CLL specialists. Both of my Australian CLL specialists have attended in person.
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