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Anyone have chronic lymphocytic leukemia (CLL)?

Blood Cancers & Disorders | Last Active: 30 minutes ago | Replies (303)

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@loriskt The regimen you speak of is Acalabrutinib (Calquence) +Venetoclax (Venclexta). It's typically prescribed as a time limited treatment with 2 cycles (28 days) of Acalabrutinib alone (the reduce or debulk the cancer burden) followed by 12 cycles of the drugs in combination. The biggest logistic challenge is that in cycle 3 the Venetoclax has to be given in a weekly ramp up from 20mg per day to 50mg, 100mg, 200mg and finally full dose 400mg with a good number of required blood draws and doctor visits. This minimizes the possibility of Tumor Lysis Syndrome (TLS) where the kidneys can't process the rapid die off of CLL cells. I'm on a similar regimen in a Mayo trial, but it uses even a newer combination of Pirtobrutinib + Venetoclax. This drug combination has worked beautifully and I've experienced no side effects. Proving just how far cancer treatment has advanced.

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Replies to "@loriskt The regimen you speak of is Acalabrutinib (Calquence) +Venetoclax (Venclexta). It's typically prescribed as a..."

@tomatack
Thanks for that information. Were you at the stage where you needed the treatment? My doctor hasn't actually mentioned "stages" to me. She just says that when my lymphocyte numbers double within "x" months (forgot how many), it's time to look at treatment. She mentioned treating with Rituximab, but said again that there's no way of knowing if the fatigue is from CLL or not, but the fact that it keeps getting worse suggests it. In fact, like other people here have been told by their doctors, she has indicated that the fatigue is probably not from the CLL and there's no indication for treatment yet. I beg to differ. When you are always feeling like you have run a marathon and can barely make it from the store to your car, I for one will try anything because the quality of life I am experiencing is just not okay (I'm 72). Had you been experiencing a lot of fatigue, and have you noticed a difference since starting the regimen? Or, I imagine it might be the case that it is too soon to tell?