Venetoclax ramp up : My mother has advanced CLL... - CLL Support

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Venetoclax ramp up

Kat1969 profile image
8 Replies

My mother has advanced CLL and has just begun taking Venetoclax. The doctors have decided to accelerate the drug ramp up to take only ten days to get to the 400mg, whilst under medical supervision. I was wondering if anyone had had a similar experience and how well the journey went

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Kat1969
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8 Replies
Justasheet1 profile image
Justasheet1

Does Mom have relapsed 17p? Or is this being done through a clinical trial?

Jeff

I think it is a very poor decision, who is recommending this? No patient was more far advanced than I was at diagnosis but the normal ramp up is 1 week @ 20 mgs., the next week @ 50 mgs, the following week at 100 mgs and week 4 @ 200 mgs. Then a determination is made about the 400 mg. maintenance dose.You should be questioning this very strenuously. Have you been advised about TLS or Tumor Lysis Syndrome? Ask some questions before you continue would be the prudent thing in this case.

closh profile image
closh

That is a strange approach - Venetoclax, even in the 20mg dose, kills off a lot of CLL cells. The slow ramp up is there to ensure it doesn't kill off more than your renal system can handle. The 5 week standard ramp-up period often knocks off most of the CLL cells in the blood and then higher dose then just whittles away the remaining cells; particularly those in the bone marrow.

I'd want to be convinced about the urgency - what is there in your mother's case to justify such a risky approach? Everyone who takes V has advanced CLL ...

Graham

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

I agree that this seems a little extreme. Will your mother be hospitalized and receiving lots of hydration? Personally I wouldn't even discuss it if that were not the case, though I don't think that I would agree to this even if it were.

Mansy profile image
Mansy

Even under hospital IV hydration and close monitoring/blood tests, my first dose of 20 mg of venetoclax, shot up my uric acid into worrisome levels.

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MsLockYourPostsPassed Volunteer

I'd love to know how much experience this doctor has had with Venetoclax.

casanova profile image
casanova

I totally agree with previous comments. I had a four week ramp up, was closely monitored but still had to be hospitalised on a couple of occasions due to uric acid, potassium levels etc not being good. Ten days sounds too rapid.

Maureen UK

thb4747 profile image
thb4747

Hi Kat, I’m on week 4 of the ramp up and 5 weeks is now the standard protocol for ramping up Venetoclax to 400mg. I’m advised that when the drug was first trialled, they started people on 200mg and 3 of the participants died. So I agree with everyone above - do the full five weeks. The drug will work wonders even at the lower levels.

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