Venclexta Question: Can any of my fellow... - CLL Support

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Venclexta Question

Gradyboy profile image
19 Replies

Can any of my fellow Venclexta takers tell me when you reach 400ml is that 4 pills a dose? I see the 200ml is two big pills. I just bumped up to 100ml today. So far so good. I haven't even felt any effects from any of the dose ramp ups as of yet. Fingers crossed.

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Gradyboy
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19 Replies
AussieNeil profile image
AussieNeilAdministrator

Yes, 4x100mg venetoclax/Venclexa pills. It doesn't come in 200mg or 400mg pill sizes, which is reassuring for those who have difficulty swallowing larger pills. (I asked this question too, when I was doing the ramp up).

Neil

Gradyboy profile image
Gradyboy in reply to AussieNeil

How did you do with the ramp up?

AussieNeil profile image
AussieNeilAdministrator in reply to Gradyboy

Surprisingly no problems whatsoever, which would be thanks to acalabrutinib and obinutuzumab clearing most of my tumour load away. I didn't need admission to hospital for monitoring and even more surprisingly, my chronic neutropenia began to improve, so I could ease up on G-CSF shots.

Gradyboy profile image
Gradyboy in reply to AussieNeil

Happy to hear that. I also had O infusions. I didn't have to be monitored at the hospital either. I have weekly blood draws and number so far are all in normal range. I keep waiting for the shoe to drop. How can I feel this good during cancer treatment. I thank God several times a day.

Big_Dee profile image
Big_Dee

Hello Gradyboy

I take 400 mg of Venclexta in 100 mg pills. I kind of wondered to when I was ramping up from 100 mg pills, I thought wow as big as the 100 mg pills are, was not too sure I could handle one 400 mg pill. :)

Gradyboy profile image
Gradyboy in reply to Big_Dee

How did the ramp up go for you?

Big_Dee profile image
Big_Dee in reply to Gradyboy

Hello Gradyboy

Had some problems with first infusion of obinutuzumab, but no problems with Venetoclax other than mild fever for 2-3 days when starting.

My H/O wanted me to stop at 200 mg on Venetoclax, but my CLL Specialist recommended that I go to 400 mg in spite of cautionary cardio meds I take.

Gradyboy profile image
Gradyboy

Thank you! Hope you continue to well.

Poodle2 profile image
Poodle2

Yes, 4x100mg. Grateful for that actually because by the time number 4 is about to be swallowed I have enough quite frankly 🙂

SofiaDeo profile image
SofiaDeo

Fingers crossed you continue to have a smooth ride! Order your next bottle of 100mg tablets ASAP if you haven't already. Weather and Christmas shipping will slow things down a bit. I find the specialty pharmacies want a 2+ week notice for refills. They *will* do an urgent fill, but better to do it early so no worries, especially with potential crazy weather. Fedex, the airports, the roads, etc. all need to be open. My ramp up from 200mg to 400mg was extended because I would otherwise have run out of med. Severe weather closed the pharmacy for 3+ days. And my backup plan was also a rush job with the East Coast emergency pharmacy scrambling to get the med out to Fedex and on the plane before the airport closed (it made it). But it was a close call for me running out. No one thought to tell me to order a refill right away when induction started. And I knew better too, I was a pharmacist, just forgot in the flurry of my induction, I was hospitalized.

Gradyboy profile image
Gradyboy in reply to SofiaDeo

Luckily our pharmacy is close by.

SofiaDeo profile image
SofiaDeo in reply to Gradyboy

Yeah, part of the difficulty of choosing to live in the Rocky Mountains lolol. But I enjoy the beauty of it; this is a hiking trail about a mile from where we are. We are in the foothills, adjacent to national parks. It's worth the logistics and travel hassles, to me.

Helen Hunt Falls hiking trail, near the top.
jacjar1 profile image
jacjar1

first starter pack only has 2 100mg pills. I am just about done. Got my bottle of pills for the next month, 4 100mg daily. I was shocked at the co-pays!! Going to see if Doc can order 90 or 180 day supply since I am now at my maximum out of pocket with insurance and prescriptions are free for 28 more days!! 😀👍

Gradyboy profile image
Gradyboy in reply to jacjar1

My co pay for starter pack was only $5. Not sure what full dose will be🤔

jacjar1 profile image
jacjar1 in reply to Gradyboy

Co-pay for starter was $600. Full prescription was 10x that amount. ended up being about 2k, since i maxed out. So glad I have LLS co-pay assistance. its been a God send.

Gradyboy profile image
Gradyboy in reply to jacjar1

Omgosh I couldn't afford that. Are you in the US?

Fran57 profile image
Fran57

Hello.

Glad to hear it’s going well.

My husband had Rituximab and is now on Venetoclax. He ramped up easily to 400 and, after a year, it was changed to 300.

Wishing you good luck and good health!

Fran 😉

Gradyboy profile image
Gradyboy

Thank you!

DanBro1 profile image
DanBro1

4 100 MG Venclexta pills each day for 12 months is the regimen. I had to reduce my dosage to 3 pills for a couple of weeks when I was simultaneously on Gazyva (Obinutuzumab) because of a drop in one of my blood components. Venclexta cost me $13,000 per month for 120 pills. Medicare picked up the cost less my 5% copay of $650 per month

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