Venetoclax & Ibrutinib

[PajamaGame]

what are your experiences with Venetoclax & Ibrutinib treatment...side effects...length of treatments

[AussieNeil Administrator]

PajamaGame, I suspect you haven't had any answers to your post, because you posted Unlocked. This post includes information on how to lock your post, so only community members can read it.

healthunlocked.com/cllsuppo...

Neil

[TiffUK]

Hi - I started on Ibrutinib two and a half months ago and it’s transformed life - massively less fatigue and only very mild/occasional side effects. My bloods have improved a lot too. I’m starting on Venetoclax in a couple of weeks so can’t say anything about that bit yet.

The whole treatment programme is 15 months and from what I’ve read on this great network and elsewhere is that there’s a good possibility of a lengthy period of remission after.

Good luck with whatever you decide

Chris

[PajamaGame in reply to TiffUK]

Thank you Chris, glad that you are having good results!

[Skyshark in reply to TiffUK]

It's shorter than you think. 15 cycles, 60 weeks, a year and 8 weeks less a day, so a few days short of 14 months.

Doctors tend to use months in place of cycles as patients understand months better.

[Guinness4822]

So far so good. On 3rd week of 400mg of Venetoclax and 3 months of Ibrutinib . Bloods good a few small spots and odd bumps which go after a few days, No other side effects.

[PajamaGame in reply to Guinness4822]

Thank you for sharing your good results. Good Luck!

[CLLCalifornia-USA]

I have been on Ibrutinib starting my ninth year. It took care of my fatigue and swollen nodes immediately. Made my hair a bit frizzy and my fingernails weaker but I’ve been lucky. I am active and can pretty much do anything I want. I feel blessed that it has worked so well and hopefully it will continue. Sally

[sidesy in reply to CLLCalifornia-USA]

This is great to read ....I wish you well

[PajamaGame in reply to CLLCalifornia-USA]

Thank you sharing your good experience. Hopeful news, Good luck!

[flippingnora1]

I started on 20mg of Venetoclax, rising to 400mg, and so far its been fairly good. Itake mine in the evening after dinner, as any symptoms would hopefully be at night. I do get feelings of nausea and slight headache, but not enough to worry too much. There is a good positive outlook with this medication. I have had CLL for 12 years now. At the beginning I had chemotherapy infusion for 4 months, which kept it at bay. But came back, so trying Venetoclax.

[Newdawn Administrator]

I was on the Ibrutinib & Venetoclax clinical trial (Flair) and took Ibrutinib for 15 months until I had to discontinue due to severe myalgia and arthralgia. However, I was not resistant to it and it was very effective. I continued on Venetoclax 400 mg for a total of 34 months as per the trial protocol and have been uMRD since April ‘21.

I tolerated Venetoclax without issue but I suspect the Ibrutinib caused greater side effects including uncontrolled tachycardia for which was was hospitalised as an emergency admission. Thankfully no AF detected.

I think it’s a highly effective treatment but I was fortunate in being able to continue for a much longer period funded on a clinical trial.

Best wishes,

Newdawn