Imbruvica: Hello all: It's been some time since... - CLL Support

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Imbruvica

larry54 profile image
12 Replies

Hello all: It's been some time since I have posted anything. Just a thought.... I have been on Imbruvica since September of 2017. I see my doctor about every 5 months. My blood work is always as the doctor says great. Is there a limit we can be on this medicine? Has anyone been on imbruvica this long or longer? I only hope and pray I can keep feeling this good and be able to stay on this med. Thank you all for any commits.

12 Replies
AussieNeil profile image
AussieNeilAdministrator

Larry, some of the initial trial participants have been on Imbruvica/ibrutinib for 10 years now :) .

cartwheels profile image
cartwheels

Hi ,I started ibrutinib on April 17 2017 so 5 years now and bloods just like you are always described as great . As o understand it if like me you accept the early side effects which were severe on me and carry on through until they lesson and it's your first line of treatment ,ie no previous chemo etc then along as you tolerate it then it could be anything . I have heard some are ten years plus . I always expected around 5 years but Im pushing through that and like yourself hoping for many more . I have 17p deletion .All the best

morepork profile image
morepork

Hello from New ZealandI've been on Ibrutinib since 2016 and while I live with side effects it does keep my blood test numbers pretty even, (within a slightly abnormal range). So much so that I'm back on 3 monthly blood checks rather than monthly ones. Am also 17p deleted.

Best wishes

Stephanie

stevesmith1964 profile image
stevesmith1964

I did 6 months of Ibrutinib after my Obinatuzamab cycles and then switched to acalabrutinib. I will be on the treatment until it stops working. I don't bother checking what my monthly blood results are, they will call me if there is a change.

BeckyLUSA profile image
BeckyLUSA

Larry, I started 1 month before you. Still on it, although only 140 mg, since 2020. Still working well.

mja511 profile image
mja511

On Imbruvica since Dec 2015 and doing great. I'm also 17p deleted.

64lusso profile image
64lusso

So great to see all you 17p folks doing well on it. I’m 11q diagnosed in 2012 and had got into a bit of a spot in early 2017 with AIHA (is that the right acronym for anemic?). After a month of Rituxan I started a six month course of B/R And started Ibrutinib at the same time on the recommendation of Dr Brown at Dana Farber. These days I get blood work done every six months and thankfully have had none of the major side effects. Five years and still rolling along.

Larry,Hello, no info to to share, just continued well wishes & thank you for sharing!

Cookie

DawnRedwood profile image
DawnRedwood

I've been on Imbruvica for over 6 years. Never had a problem with it. When I was first prescribed the drug the oncologist told me to think of it as a blood pressure pill or a pill for diabetes, you take it for life.

CLLCalifornia-USA profile image
CLLCalifornia-USA

I’ve been on Ibrutinib since January 2017 and will continue until it quits working. I have labs done every six months and then a visit to my oncologist. She usually says I’m boring and she will see me in six months. Just as DawnRedwood stated, it’s no different than taking meds for diabetes, BP, heart, etc. I love feeling great. Ibrutinib is my third line of treatment. I feel blessed to feel so great. Hope you can continue also. Sally

hervec profile image
hervec

On ibrutinib since march 2018 del 17P Notch1 mutated del 12Q TP53 mutated... Doing great

Jacksc06 profile image
Jacksc06

Hi Larry. I have been on IB since 2017 also, bloods are good.

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