I've been on Venetoclax for a year and a half just 2 pills half the usual dose) and I've been feeling great if a little tired, but there again I've just turned 70 and expect to remain as hyperactive as I've always been. With the treatment, leuckocytes went down to about 2500 but I balance that with Hizentra, every 2 weeks and the occasional shot of Filgrastim. However in the 3 weeks, I went down to under 1 300 leukocytes and about 400 neutrophils :despite Hizentra and 2 injections of Filgrastim, 10 days later the results are still the same...Of course, I have this fantasy (don't we all) about being being cured and not needing medication anymore...Somehow the oncologist does n't feel that way. Any thoughts?
Hugs to all of you!
Carmen
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CarmenfromParis
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The Hizentra IgG infusion just boosts your immunoglobulins to reduce your risk of infection. It shouldn't have any impact on your leukocytes. What's slightly concerning is why your neutrophils are low, despite the filgrastim G-CSF neutrophil boosting shots.
Do you know if you have reached U-MRD and perhaps may be able to stop treatment?
You are already on half dose Venetoclax, so unless your specialist is prepared to reduce that further, the only options are to either increase the frequency of filgrastim injections or accept the higher infection risk with neutropenia. I've had about 200 Filgrastim injections in the last 2 years, including periods when I was having them daily. Hopefully your neutropenia will improve, perhaps with a bit more assistance from Filgrastim, but I think your best course of action is to discuss these options with your specialist, including whether they want to look into why this may be happening.
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Carmen said "I've been on Venetoclax for a year and a half just 2 pills half the usual dose)"
Perhaps what's more relevant is how long Carmen was on the full dose and why it was reduced, but most important is how well Carmen's CLL is being controlled and whether she may be able to stop taking Venetoclax.
I was on full dose for a month but it was so violent on the digestive system that it made any form of life further away than a room impossible, if you see what I mean... But obviously as it is, my blood work is being vacuumed on a half dose...Thanks again
I am not trying to play doctor, although I believe that if Carmen is UMRD and given they have been on it for more than 12 months, there should be no reason to continue venetoclax. If I am not mistaken, venetoclax is usually reduced or temporarily halted when neutropenia requires a filgrastim.
As yet, treatment has never been halted during Filgastrim episodes. Having read all your wise mails, I have just written to my oncologist about UMDR... I'll keep you posted! Thank-you Smakwater!
Thank-you Neil- Oncologist never mentioned the idea of stopping; I was thinking the same thing today: either more Filgrastim or greater possibility of infection: not such a great idea in COVID days!
BTW, I could not for the life of me find any option making my post private...
Does Filgrastim ever stop working ? Thanks again, Neil!
G-CSF drugs like Filgrastim are in fact a messenger protein, (specifically a cytokine), which are close, if not identical in structure to cytokines our body makes to regulate neutrophil production. If they stop working, we are in the concerning position of not being able to naturally fight off bacterial and fungal infections. This can happen for a range of reasons; CLL infiltration of our bone marrow, crowding out room our bone marrow needs to make blood cells, including neutrophils as well as bone marrow suppression from a wide range of drugs, including all CLL treatment drugs and even sometimes antibiotics and NSAIDs.
I've had around 200 Filgrastim injections and at times my bone marrow required daily injections to force neutrophil production. When my bone marrow was considerably cleaned out and before I was on the maximum dose of Venetoclax, my neutrophil production was responding brilliantly to just one injection. It takes about 10 days for neutrophils to appear in your blood after your bone marrow restarts making them.
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Worried
Would appreciate your input!
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