Venetoclax Ramp Up Programme. : I am 76 years... - CLL Support

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Venetoclax Ramp Up Programme.

Coldplaybest profile image
21 Replies

I am 76 years old and my CLL is being treated with I and V. I am just coming to the end of 3 months of 15 months Ibrutinib and start 12 months of Venetoclax in pill form later this week as a day patient initially. I have not been told how the ramp up process will happen but would like to know in general how it is delivered and what amounts of venetoclax to expect? My time spent with the consultant is very limited so it would be useful to know what to expect in advance. Thankyou.

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Coldplaybest
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21 Replies
Homebody123 profile image
Homebody123

hello I’m in the UK at UCLH and this is how it worked for me. I was given the first weeks dose on a Tuesday afternoon (small 20mg tablets) after an early morning blood test. I had to take it at 8am the following day then come in for a blood test at 2pm and another blood test at 8am the day after. I was then telephoned on Wednesday afternoon and again on Thursday to say I could go ahead with the next dose etc. for the rest of the week.

I returned to hospital the following Tuesday for another blood test ahead of the dose being increased to 50mg. Same protocols of a blood test Tuesday morning before dose increase, take the tablet on wed morning, another blood test on the Wednesday afternoon - phone call to say all is fine - another blood test on Thursday morning and phone call mid morning to say I could continue. Same protocol at week three by which time I was up to 100mg. Then from week four just the blood test prior to the increased dose to 200mg and again the following week at 400mg without the two blood tests afterwards. Allopurinol alongside venetoclax for the first six weeks. Note that the tablets only come in 20mg 50mg and 100mg so by full dose it’s four venetoclax tablets alongside anti biotics 3 times a week, ibrutinib daily, anti virals and allopurinol daily until the full dose of venetoclax is administered then allopurinol was dropped .

I was medium risk of TLS as my WBC was still above 25 which is the measure UCLH uses. No problems at all in the ramp up other than the faff of three hospital visits a week for the first few weeks. Good luck to you.

Coldplaybest profile image
Coldplaybest in reply toHomebody123

Wow. I really appreciate the information and explanation you have given me. Thankyou. I'm sure I will get a similar programme. My only concern is that I am one hours drive from the hospital!

Homebody123 profile image
Homebody123 in reply toColdplaybest

It’s a pain for three weeks but it does give you the comfort of knowing everything is going well. Maybe you could combine it with an overnight stay and dinner out etc for the first couple of weeks to cut down on driving.

Coldplaybest profile image
Coldplaybest in reply toHomebody123

Your right. We may take that advice in week 2. I will need to arrange kennels for my dogs!

5214 profile image
5214 in reply toHomebody123

I was on Vencleta for about a year and as you know drink a lot af water and I was up all night going to the bathroom. I recently was put on Jayprica and have been taking it like 7months and now for the first time since 2011. The drug is hard to take but very glad I did .

5214 profile image
5214 in reply to5214

I’m now in range for the first time!!!! Thank you MD Anderson and Dr. Weirda!!!

Skyshark profile image
Skyshark

Drink plenty of water, aim for 2.5L a day starting 3 days before first tablet.

You wouldn't want to be without your patient alert card!

medicines.org.uk/emc/rmm/22...

Calender

abbviepro.com/content/dam/a...

Poster TLS dosing titration for low risk.

abbviepro.com/content/dam/a...

Source for above, also has link for high risk TLS poster.

abbviepro.com/gb/en/oncolog...

Example from Leeds, they revamped the website and this vanished.

web.archive.org/web/2023092...

Make sure you have "a meal" with every dose. A meal is between "low fat" 512 Kcal and "high fat" 753 Kcal. Aim for the "low fat" meal at start of week and if you want increase it as week progresses.

The meal they used for dosing trials was quite technical. It's badly expressed as the baseline is unfed. Unfed is a third of normal dose. Full dose is the 512 Kcal meal, 753 Kcal is 133% of full dose.

Effect of Food Administration with a low-fat meal (approximately 512 kilocalories, 25% fat calories, 60% carbohydrate calories, and 15% protein calories) increased venetoclax exposure by approximately 3.4-fold and administration with a high-fat meal (approximately 753 kilocalories, 55% fat calories, 28% carbohydrate calories, and 17% protein calories) increased venetoclax exposure by 5.1- to 5.3-fold compared with fasting conditions."

Coldplaybest profile image
Coldplaybest in reply toSkyshark

Thanks. Very timely advice. I've just changed my water glass for a much larger one!

Newdawn profile image
NewdawnAdministrator

I’m in the U.K. and was on the Ibrutinib & Venetoclax arm of the Flair trial. I wasn’t considered high risk for TLS (tumour lysis syndrome) as the Ibrutinib had successfully cleared my ALC and nodes by the time I started Venetoclax. However, I spent 3 out of the 5 titration events overnight in hospital when my phosphate levels were errant. This is how it was administered and it was very time intensive on the day unit. I suspect as one of the first I&V patients, it was unusually strict in my case. Some days, I spent 8-9 hrs sat on the day unit because once I’d taken the Venetoclax, they wouldn’t let me leave until the blood test check they do after about 6 hrs.

Day 1 Venetoclax 20mg ONCE daily for SEVEN days

Day 8 Venetoclax 50mg ONCE daily for SEVEN days

Day 15 Venetoclax 100mg ONCE daily for SEVEN days

Day 22 Venetoclax 200mg ONCE daily for SEVEN days

Cycle 2 onwards

Day Drug Dose Route Diluent & Rate

Day 1 Venetoclax 400mg ONCE Daily

I had to have a blood test 24 before the administration of the V too. I can’t stress that you must keep up your hydration. Best wishes. It’s a very effective treatment and didn’t cause me any major problems.

Newdawn

Coldplaybest profile image
Coldplaybest in reply toNewdawn

Thank you so much. It is so reassuring to know what to expect when this process begins. John

roszika profile image
roszika

All I can tell you is my experience. I was ramped up on Veneteclax here in Melbourne as follows, 20mg week one, 50mg week 2, 100mg week 3, 200mg week four, 400mg week 5 and I remained on 400mg daily for 2 years from april 2019 till march 2021. I was monitored in hospital for the first 3 days on each new dosage to ensure I did notsuffer tumour lysis syndrome . I did not have any really bad reactions, just nausea every morning for the whole 2 years but nothing worse and I am still in remission in Feb 2025!I hope you are as lucky as I have been,

Coldplaybest profile image
Coldplaybest in reply toroszika

Thankyou. It's reassuring that the treatment pattern to each reply is very similar.

Dragonfly2007 profile image
Dragonfly2007

Hi Coldplaybest, my treatment is the same as yours and I'm in the first week of the ventoclax ramp up with 20 mg this week. I am considered low risk of TLS.

I had my blood test on day one, given a week's ventoclax tablets to take home (no allopurinol) I did not have to wait for another blood test after taking the tablets. No side effects so far. I drink 2 litres of water a day plus mint tea and decaf coffee. To help with the water consumption I bought a 2 litre bottle that has times marked on the side so I have a reminder to keep drinking!

I'm back at IVO cancer hospital in Valencia, Spain tomorrow for a blood test, hematologist appointment and next week's tablets. Hopefully it will continue to be straightforward 🤞

Hope your ramp up goes well.

Coldplaybest profile image
Coldplaybest in reply toDragonfly2007

Thankyou. I feel so much more confident after your's and other replies. I need to up the water consumption from now on!

Dragonfly2007 profile image
Dragonfly2007 in reply toColdplaybest

Yes it really seems to help, although bathroom trips increase 🤣

Skyshark profile image
Skyshark

Actually as there will be NHS hospital to hospital variations you should ask your CNS. They should be able to tell you their plan. As it's now Wednesday you are probably starting today.

This is another I've found for St Luke's, Royal Surrey.

royalsurrey.nhs.uk/download...

Arniepalmer profile image
Arniepalmer

go to the venetoclax site and it provides the ramp up schedule and all important information. Ramp up starts with 10mg. And ramps up weekly over 5 weeks to your max dose. Drink plenty of water daily. Good luck and wishing you the best

Junipero profile image
Junipero in reply toArniepalmer

I’m also taking allopurinol 300mg daily to help protect the kidneys

Junipero profile image
Junipero

I am 76 also. CLL since 2004. Five years of various treatments. Just started Venetoclax through CedarsSinai research hospital in Beverly Hills, CA. Here’s the ramp up they put me on:

Week 1: 20mg daily

Week 2: 50mg daily

Week 3: 100mg daily

Week 4: 200 mg daily

Week 5: 400mg daily

Will continue at 400 for another six months or so (I have a "full house of good prognostic indicators" according to the doctors" so my case is a relatively easy one. I hope this info helps out. All the best to you.

Coldplaybest profile image
Coldplaybest in reply toJunipero

Thanks. I've just returned from my consultant visit and he has confirmed that my programme will be the same as yours. It starts tomorrow.

Skyshark profile image
Skyshark in reply toColdplaybest

This is the standard dose escalation for CLL to prevent TLS.

What's important is the management of the dose escalation. Where and when they want you to attend for blood tests at 6 and 24 hours after the first 20mg and 50mg doses. Does anyone have to be informed those urgent blood tests have been taken? After the 6 hours blood test they have to contact you to either tell you all is well or to get into hospital [1] for fluids and a bag of Rasburicase. Then they have to contact you after the 24 hour blood test to tell you that you can take the next dose. There is huge variation in that as it depends on the local clinic.

[1] The hospital I attended has a Combined Triage Assessment Unit (CTAU) that is staffed 24 hours.

uhdb.nhs.uk/combined-triage...

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