CLL experience

[soapstone]

I was diagnosed with CLL in September 2015 - started on Imbruvica in January 2016 - after 2 1/2 years it no longer was effective - started on Venclexta for 2 years - white cells have been normal for 2 1/2 years - had no reactions from Venclexta - have had 3 shots of Moderna with no reaction - have not had antibodies tested

[Arro]

Hi soapstone…I’m new here too, congrats on the 2 1/2 years of normal wbc count! I’m getting there but got a long way to go…

[BobbyFour]

That is good to hear, a positive first post!

[LeoPa]

How long will you stay on V? I hear that's a limited time treatment.

[soapstone in reply to LeoPa]

I was on V for 2 years and have been off for 2 1/2 years - usually they say if your blood work is good after 2 years you can go off V

[LeoPa in reply to soapstone]

Great! I wish everybody did that well on it.

[Justasheet1 in reply to soapstone]

Soap,

Great news. The two years is for relapsed patients with rituxin and for treatment naïve it’s one year with obinutuzamab if I am correct.

Jeff

[soapstone in reply to Justasheet1]

I am not a relapsed patient - my doctor said 2 years and I also had rituxan for 6 months - I started on Imbruvica for 2 1/2 yrs and it stopped working and then went on V

[Justasheet1 in reply to soapstone]

V,

If you were on ibrutinib and it failed and then you started on Venetoclax and rituxin, by definition you are indeed relapsed after ibrutinib.

Jeff

[Pooldude05 in reply to Justasheet1]

Good evening Jeff I really like the way you put “ and it failed “ referring to the ibrutinib ,most doctors and some others say “we failed it” you got it right the drug failed us not the other way around 👍

[CLLCalifornia-USA]

Congratulations. Sounds like life is going well for you and I hope it continues. Happy Valentines Day❤️ Sally