Has anyone used Venetoclax?

[bbrowning84]

My ex was diagnosed with CLL about 6 years ago and was at stage zero until this year. She is starting Venetoclax and immunotherapy this week and I was just checking to see if anyone had experience with this? TIA

[PennyLane2024]

I finished my Ob immunotherapy today and have 6 more months of Venetoclax. Amazing treatment. Saved my life. First four months are tough since you have ten 8 hours days giving blood, meeting with doctor/nurse, getting 4 hours of infusions. Well worth it.

[ArtistBlacksmith]

I had V+O 12 month course completed 19 months ago. I tolerated the course really well with no major impacts on life and work. A few minor things. Unfortunately relapsing now but I have a complicated case. Most people get a long durable remission.

[Classicaljazz]

I have had 3 years remission so far after completing a year of venetoclax with obinutuzmab also given just for the first 6 months. I went from being really sick to being OK again!

[Pearlpink]

hi. It’s a great treatment. I got clinical remission a year ago and shrank my very big spleen back to normal. I was so grateful that I was able to have it instead of normal chemo. I had a bit of reaction at beginning but they watch for it and treat it instantly. Good luck both of you! Xxxx

[lankisterguy Volunteer]

Hi bbrowning84,

Venetoclax is one of the most commonly used targeted drugs for CLL and we have over 3000 past postings that mention it: healthunlocked.com/cllsuppo...

I was on it for 6 years starting in 2016.

Most patients, now, get it for 12 months or 2 years and reach the point where there is no detectable CLL in their blood (and some even none in the bone marrow). They the can be drug free for 2 years to 10 or more years.

Len

[Cadelove in reply to lankisterguy]

Is it best to take this drug in morning or night. I start tomorrow

[lankisterguy Volunteer in reply to Cadelove]

I saw no difference, but my CLL expert doctor advised to take it whenever was most convenient to assure no missed doses or large variations in the time.

And if I had stomach upset- to take it at night on an empty stomach or sleep issues- then to take it in the morning. If I wanted to try the opposite time schedule, to shift slowly - like 2 hours each day, over 6 days to get to the new schedule.

Len

[AussieNeil Partner Administrator in reply to Cadelove]

Some find taking venetoclax works best for them when taken in the morning. Others find it more tolerable when taken in the evening, Try shifting when you take it if you experience side effects. I'd just slip it around 4 hours per day until you get to your new time, to fit within the allowed window should you miss a dose at the usual time.

Neil

[Cadelove in reply to AussieNeil]

Thank you so much

[Skyshark in reply to Cadelove]

You take it with a meal.

drugs.com/pro/venclexta.html

A "meal" is between 512 and 753 Kcal for 100% to 133% uptake.

12.3 Pharmacokinetics

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."

[Adlucy]

I finished this treatment in July and found that I tolerated it well. The hardest thing once the infusion stage was over, I found, was organising myself so I remembered to take the tablets daily. I won't know about my MRD status until October but I am currently in remission. I hope it goes well for her.

[InFlorida]

I finished my regimen about six months ago. Good results with little, albeit few, side effects. I’m currently getting 3 month blood tests and am happy I opted for this treatment over Calquence. Obviously, that is “Plan B” if needed (knock on wood).

Good luck and have a good evening, R