Return of sll

[Tigger53]

Hi my sll has recently woken up again and I have swollen nodes, fatigue, sweats etc, my consultant who is very good is going to start me on imbruvica (ibrutinib) on Monday. What are other people's experiences with this drug. Are there many side effects . Thanks

[LynnB1947]

I've been on ibrutinib/imbruvica for 3 years now for SLL with very good results. Side effects:

+ Neutropenia (low abs neutrophil count at 3 months) - took 3 neulasta injections no more problems

+ Joints, tendons & muscle soreness ... comes & goes --- lasts a couple of days each time

+ Insomnia when taken at bedtime

+ Hair is now wavy & fritzy

+ Brittle nails

+ Occasional pimple on face

+ Fatigue ...

Side effects have been tolerable for me. Wishing you good results!

Lynn B

[Tigger53 in reply to LynnB1947]

Thank you

[LynnB1947 in reply to Tigger53]

I didn't mention muscle cramps but add those to the list ... foot, leg, fingers, torso ... mine usually fade in 20-30 seconds.

I also received Rituxan monthly for about 9 months when I started ibrutinib.

[NoMoRLS]

I'm sorry friend. How long was your SLL asleep? Hoping your first line of tx kicks it out for good. 😎🐶☀

[Tigger53 in reply to NoMoRLS]

Hi, it has been asleep for just over 4years following 6mths of chemo

[Cllcanada Top Poster CURE Hero in reply to Tigger53]

Imbruvica (ibrutinib) is exceptionally good a shrinking nodes in CLL, I would think it would be the same in SLL.

There are a number of side effects on Imbruvica (ibrutinib), but they tend to be minor and transient.

The website has a complete listing of side effects and adverse events, as well as a patient guide. Here is the link

imbruvica.com/cll/dosing-an...

You need to keep well hydrated.

~chris

[Tigger53 in reply to Cllcanada]

Thank you

[Hoffy]

I am on it and doing well. I take it at night before bed and that seems to have the least stomach issues.

There are many new things happening so it does not mean you will be on it forever.

I am on Veneteclax plus Ibruvica and my numbers have gone way down. They hope is to get off everything in about 1 year.

[Tigger53 in reply to Hoffy]

That's good to hear, thank you