Reducing Imbruvica dosage

[Survivor1951]

About to change daily Imbruvica dose by taking my 420 mg every other day rather than daily. Has anyone done this? Also, has anyone used Gelclair for mouth sores? Success?

[AussieNeil Administrator]

Given the half life of Ibrutinib is around 5 hours, taking Ibrutinib alternate days will leave you exposed for a considerable period when your CLL cells are not inhibited from growing! The appropriate means of reducing your dose with medical supervision, is to change your Ibrutinib prescription back to the 140mg individual tablets so you always take at least one tablet every day.

Neil

[annmcgowan]

I agree with AussieNeil on ibrutinib issue. If you are having problems I would advise discussing this with your doctor. I would never alter my prescription unless advised.

I have used gelclair I found it helpful but not as helpful as difflam mouth wash. This also comes in hard pastels and a spray. I also found igloo and bonjella complete good for pain relief and healing individual mouth ulcers too.

Good luck

Ann

[Survivor1951 in reply to annmcgowan]

My oncologist, after looking up the “half life,” suggested a 420 mg tablet every other day. Admittedly, he had not recommended this previously. We are trying it for one month, starting today, Feb 19, then blood work March 18 and a PET scan in April. I so appreciate the info!

[AussieNeil Administrator in reply to Survivor1951]

While I'm relieved to hear it was your oncologist that suggested going to a 420 mg tablet every other day, I still can't understand why they don't switch you to the 140mg tablets. The half life of Ibrutinib was very cleverly assessed and is stated to be 4 to 6 hours. If it is 4 hours for you, then after 24 hours, you have 1/64th of the dose remaining. After 48 hours, that falls to 1/4,096th.

I wonder how many CLL patients your oncologist sees, given they have ordered a PET scan, not a CT scan. The latest iWCLL Guidelines clearly recommend CT scans (and only where necessary). See:

healthunlocked.com/cllsuppo...

The iwCLL Guidelines 2018 state

3.5.2.3. Other imaging methods. Except in patients with proven or suspected Richter transformation, positron emission tomography (PET) scans do not provide information that is useful in the management of CLL.86 Similarly, nuclear magnetic resonance imaging generally does not provide useful information beyond that of CT scanning in the management of CLL and therefore is not recommended outside of clinical trials."

bloodjournal.org/content/13...

Neil

[Survivor1951 in reply to annmcgowan]

Very much appreciate the suggestions for the mouth sores. They’ve been my primary obstacle on this journey. Some are just unbearable, half-dollar size that burn constantly. I will look into your recommendations. Thanks.

[annmcgowan]

Hi no problem. My GP has given me localised steroids for the difficult ones too. I haven’t tried them yet as the other products I recommended do the trick.

Ann

[BluMts]

Sounds like you are in the great position of trusting your oncologist. He'll be aware that Ibrutinib is a relatevly new drug and he'd hopefully welcome your suggestion of co-ordination with an experienced CLL Specialist who has done research and prescribed Ibrutinib, before deciding on long term method of lowering the full dose you were on. Please pay attention to Aussie Neil's comments above if you decide to think again.