Venclexta 600 mg: Hi everyone! Is anyone on 60... - CLL Support

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Venclexta 600 mg

Aliona06 profile image
14 Replies

Hi everyone! Is anyone on 600 mg of Venclexta? My father is on Venclexta for almost two years now. Rituxan one infusion every three months was added in January 2019 after signs of progression. Prior to that he was on Imbruvica, that kept him in remission for four years. Now seems like his CLL/SLL is progressing again. His doctor changed his Venclexta dose from 400 to 600 mg a couple of days ago. I haven't seen anywhere this dose to be used in CLL and I'm worried. He feels very fatigued now, no appetite, no energy. I do understand that his body needs to get used to the higher dose, but I'm questioning if is safe, if it's acceptable to be prescribed 600 mg Venclexta daily.

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Aliona06
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81ue profile image
81ue

I see that dose for ​Acute Myeloid Leukemia "when dosing in combination with

low-dose cytarabine"

drugs.com/pro/venclexta.html

Aliona06 profile image
Aliona06 in reply to 81ue

Yes, I saw that too earlier. That's exactly why I'm questioning it. Thank you for responding!

in reply to Aliona06

your fathers progressing. 600 mg may not be normal for cll but it is not an overdose. how old is your father

Aliona06 profile image
Aliona06 in reply to

He's 68.

in reply to Aliona06

it's not an overdose, will it be effective-thats a different issue.

PlanetaryKim profile image
PlanetaryKim

I am no doctor, but if his CLL/SLL is progressing after he has been on venclexta this long, then to me that says he is developing resistance... in which case I don't see how increasing the dosage of a drug he is growing resistant to will help. Is the doctor who did this dose increase a CLL specialist? If not, do try to get your dad into an actual CLL specialist (doctor who treats CLL patients exclusively or mainly).

Aliona06 profile image
Aliona06 in reply to PlanetaryKim

Yes, he is a CLL specialist. He brought my father "back to life" from very bad CLL complications a couple of times in the last fifteen years since his diagnosis. I'm trying not to question his judgment yet, will wait first to see if there'll be any positive results.

81ue profile image
81ue in reply to Aliona06

PlanetaryKim has a good point about resistance. Venetoclax is known for fast results (and causing nausea after the dose which won't help his appetite) so the increased dose should show if it works very soon? Is that what the dr. expects? You can also ask the dr. what other recommendations on the plan b treatment and plan c treatment they have if he can't tolerate the venetoclax dose

Aliona06 profile image
Aliona06 in reply to 81ue

My father's lymph nodes are way smaller this morning. We'll take it as a good sign. Today is the fourth day on the higher dose.

81ue profile image
81ue in reply to Aliona06

That's good news, and it opens up another possible question that others can ask their doctor if increasing venetoclax can help . If the doctor reduces the dose again back to 400mg that would also be interesting.

Nicebaps profile image
Nicebaps

I've been on V 400mg daily for the past 30 months and now it's stopped working. I've not heard of anyone having 600mg. I guess it's short term is it?

Safety wise I read they have tested it up to 1200mg. How was the experience on increasing to 600mg?

Aliona06 profile image
Aliona06

He's actually doing pretty well right now. For about two weeks after the dose was increased, my father was very fatigue, no appetite, developed diarrhea. But then he started feeling better and better. The labs are good as well, except the low platelets (they've been low for years) and slightly elevated BUN. He gained back weight and looks like himself now. Praying and hoping that will last for a long time.

BLP1211 profile image
BLP1211

Great! !

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