Imbruvica

[AAli]

Any one heard about this medicine? Is it for CLL?

thanks

[AussieNeil Partner Administrator]

There's lots on this site about ImbruvicaI (the marketing name), but first search for it using the alternative medical name Ibrutinib, as you'll find far more articles about the results of clinical trials and posts by people taking it for CLL under that name. Within the last month or so, CLLcanada has posted a couple of references to recent papers looking at how patients on the drug are going.

Imbruvica /Ibrutinib is a maintenance drug; you need to take it indefinitely and at around US$100,000 per year, unless you are a multimillionaire, the best way to gain access to it is via a clinical trial. Those living in the USA may be able to get it at a much reduced cost if they have the necessary health insurance cover. Availability in other countries depends on the country, but generally it is only available on a clinical trial or perhaps if other approved CLL treatments no longer work. It is relatively unusual to be able to obtain the drug for use in your first CLL treatment.

There's still a great deal not know about the long term use of drug, as the longest anyone has been using it is less than 4 years. We may eventually find that commencing on this drug during watch and wait might be better long term than waiting until treatment is necessary, but not many patients have been given it as their first treatment, so we are still collecting long term usage data. It does have side effects, which mostly lessen with time on the drug. Diarrhoea, brittle nails, hair turning wavy, joint pain and atrial fibrillation (5%) are commonly reported.

Neil

[Ansll]

Hi AAli I have been using Ibrutinib now for 30 days and it has done miracles for me. I live in Melbourne and it is not yet approved in Australia. I was extremely lucky to receive it via compassionate access because I was allergic for FCR after 2 cycles. My WBC has much improved in this month and no neutropenia any more. Far less toxicity so more energy and feeling overall like I was before I got sick last year September.

I know it is only very short term my results so far but indeed a very promising outlook. I take 3 tablets at night-that is all, as simple as that. I am still winding down on steroids for another 2 weeks and then I only have to take the Ibrutinib daily for as long as necessary or until something better comes around!

[AAli in reply to Ansll]

Hi, really encouraging

Any side effects you faced or facing?

Regards

[Ansll]

Only some reflux so far, AAli and I took some med for that.

[lartington]

It is lovely to hear that some people on Ibrutinib have few side-effects. my husband has been on it 8 months, he has been on it off it three times due to needing surgery (in which event you need to come off it 7 days prior to and 7 days after surgery), his main problem is acute fatigue and some depression. but, some good news, because his blood levels all round have improved he no longer needs to take ivig every 28 days which he did for 4 years, his neutrophils have improved and he hasn't had sepsis or chest infections for over a year. ..... so good luck......... watch this space!!

[bkoffman CLL CURE Hero]

Been on it for almost 3 years and doing great. Deep partial remission. <1% CLL in blood. Mild muscle aches and pains persist. They were worse at 1st. Had Gi issues too, now better.

[Justasheet1 in reply to bkoffman]

Doc Koffman,

It's so good to hear that you are feeling well. I never get tired of reading your posts.

Jeff

[bkoffman CLL CURE Hero in reply to Justasheet1]

Thanks.