Ibrutinib resistance: Anybody taking ibrutinib... - CLL Support

CLL Support

22,456 members38,596 posts

Ibrutinib resistance

13 Replies

Anybody taking ibrutinib for over 3 years?

It seems that resistance if develop (still unclear how many people do develop resistance) may start approximately at 3 years

Thanks

Read more about...
13 Replies
81ue profile image
81ue

there was a lot of info shared in this post which covered factors such as type of treatment combos and P53 mutation status and how it was affecting chances of developing resistance .

"Clonal Evolution, mutations and resistance to CLL treatment"

healthunlocked.com/cllsuppo...

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Not sure that the 3 year window applies anymore, the work at OSU has found resistance to Imbruvica (ibrutinib) and ultimately mutation... many months before it is observed clinically...

BTK mutations associated with ibrutinib resistance occur at the C481 amino acid to which ibrutinib irreversibly binds, whereas PLCγ2 mutations occur preferentially in the autoinhibitory domain of PLCγ2.

ncbi.nlm.nih.gov/pubmed/300935

More from the OSU team

bloodjournal.org/content/12...

Still more

mdedge.com/hematologynews/a...

~chris

17Pisme profile image
17Pisme

I was fortunate as a 17 P to get four years out of Ibrutinib and now I'm on Venetoclax & Rituxin. At the 3 1/2 year mark the nodes began to enlarge which was the first sign that something was changing. Should you have a similar situation make sure that when you make the change over ( in my case to

Venetoclax) that you continue on Ibrutinib along with Venetoclax for the first 3-4 weeks to assure you are equal to the dosage you body was accustomed to with Ibrutinib. Venetoclax has a 5 week ramp up and the first 3 weeks are low dosages to assure tolerance.

Hoffy profile image
Hoffy in reply to 17Pisme

Did they see CLL coming back in your blood first or in your nodes first? I am 17P Deleted as well.

Be well,

Hoffy

17Pisme profile image
17Pisme in reply to Hoffy

Nodes in neck and later groin area over a 4 month period. WBC only began to rise later.

Hoffy profile image
Hoffy in reply to 17Pisme

Were they checking your blood for CLL specific cells?

17Pisme profile image
17Pisme in reply to Hoffy

They were doing their monthly checks but the nodes were the biggest indicator.

Hoffy profile image
Hoffy

There are people out 6 year plus on Imbruvica.

I have been on an I plus V study. I got to MRD negative after 14 months. Now I am on either Imbruvica or a placebo. I am 99% sure it is a placebo.

So far I am doing well.

Hopefully the new treatment will be combos like I plus V for a year or so then wait,

Be well,

Hoffy

kathymac52 profile image
kathymac52

Oh I hope not.....my husband is on Ibrutinib, and is 11q deleted. He has been on for about 6 months now with good results.

Lola69 profile image
Lola69

I’ve been on imbruvica since February 2016

nature.com/articles/leu2017...

Deta1961 profile image
Deta1961

I’m on ibruvica since dec 2017 and i’ve a TP53 mutation... a lot of infeccions almost every month and right now a cronic herpes ... Anyone? Horrible ...

flutterbye profile image
flutterbye

I have been on Ibrutinib since September 2014. Still working although my lymphocytes are taking ages to get below 2.1

You may also like...

Resistance to Ibrutinib

reassurance please. I'm tp53 mutated and have been on ibrutinib 7 months, which is not working.I...

ibrutinib resistance testing

test that confirms actual resistance to Ibrutinib? I could not find it. Thanks in advance

Ibrutinib Resistance

with 17p deletion so she was recommended to start on Ibrutinib (Imbruvica) from late 2019. Her...

BTK C481S-Mediated Resistance to Ibrutinib in Chronic Lymphocytic Leukemia

in the first 2 years, while CLL progression is rare in the first year, but increases over time....

Ibrutinib

I am 64 years old was diagnosed with CLL on 3rd March and started taking Ibrutinib from 3rd June. I...