I just received an email from a friend to suggest it is available. I’m to start 6 months of BR treatment on Monday 12th January, and would be so relieved if I can try a non-chemotherapy drug instead.
Dear Healthcare Professional
I am pleased to inform you that Janssen UK has been granted European Medicines Agency (EMA) marketing authorisation for IMBRUVICA® (ibrutinib) in the United Kingdom.
Prescribing information can be found at the end of this email.
IMBRUVICA® is indicated for the treatment of adult patients with:
• Relapsed or refractory mantle cell lymphoma (MCL). 1
• Chronic lymphocytic leukaemia (CLL) who have received at least one prior therapy, or in first line in the presence of 17p deletion or TP53 mutation in patients unsuitable for chemo-immunotherapy. 1
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Ruhi9
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i think you should check your situation with your consultant. I'm not as familiar with these things as much as some others here but a quick ckeck on the EMA website revealed...
Hi I believe it is. After three relapses I have been on Ibrutinib for nearly six months. It is quite unbelievable. I have been living with breast cancer, CLL and neutropenia for six years . Unable to do anything in the year prior to this treatment.
I feel like a different person, getting up ,people to see things to do and there is no stopping me. My consultant is amazed.
Thanks for your responses, and Chesandme what you wrote fills me with hope.
I forwarded the information to the Macmillan haematology nurse at my local hospital where I’m due to start BR, and she has discussed it with my consultant. She has written back to say they are unable to prescribe it for me in the next couple of months, and that I need to start my treatment as planned on Monday morning.
She writes: "The good news about this licence is that it means in the future the drug will be available at time of relapse or if the BR is not tolerated, but at the moment we can’t use it. The licencing does not give us the ability to use it straight away – it is a complex thing which I struggle to understand.”
Needless to say, I feel gutted; I was so excited at the possibility of not having to go through chemotherapy again. Hopefully the BR will be better tolerated than FCR which I went through 4 years ago.
If by BR you mean Bendamustine and Rituximab, my husband had that last January with no noticable side effects, his health has improved a lot since he had that treatment.
I am hoping when we see his consultant in February his wbc count will still be as good as it was when he saw him in November last year.
I wish you all the best and hope everything goes well for you.
It’s unfortunately not my first treatment. I had five cycles of FCR four years ago, and was in remission for 3 years, but blood counts have deteriorated over the past 6 months and are now as follows: WBC 148.3; Neutrophils 1.5; Haemoglobin 78; Platelets 31.
Anyway, I've tried clutching at these final straws, but it appears that I have to have another relapse or else react badly to BR before being considered for the new drug.
I had FCR six times. Then five years later five times, then dexamethasone. Then bendamustine three times. With 40 percent cll in the bone marrow I have ibrutinib now under the conditions you posted. The deal is in the uk that we can have ibrutinib if other stuff has failed. The b made me feel good in the end but just didn't work well enough for me. Good luck.
The only other way is on a trial. FLAIR and IciCLLe offer a 50% and 100% chance of getting Ibrutinib. I'm on the latter trial. It's worth exploring what trials are available in your area, but I wouldn't delay essential treatment while doing that. Good luck with the BR, which is supposed to be 'softer' than FCR.
My understanding of the official situation with Ibrutinib availability in the UK is this:
During April - September 2014 Janssen offered Ibrutinb on a compassionate access scheme called a Named Person Programme, around 500 UK patients were treated through this scheme which is now CLOSED.
European Marketing Authorisation (which includes the UK) for Ibrutinib was officially granted late July 2014 for relapsed/refractory and 17p deleted CLL. The drug company then had to apply for approval of the drug in the UK by NICE and the Cancer Drugs Fund. Both processes are happening in parallel and as yet are INCOMPLETE. Therefore the only way to get Ibrutinib in the UK as at January 2015 is on a clinical trial. This is a changing scene and in order to keep up with it we share as much as we know with everyone else on this site.
The recent trial results with the new drug ABT - 199 plus Rituximab in Australia look very positive. Does anyone know if there are any UK trials planned?
According to the UK Clinical Trials Gateway, there are 3 ABT-199 trials recruiting in the UK. See my reply to Andrew Schorr's recent authoritative update post on ABT-199:
Thank you MaudMarie and Graham for the information on availability of Ibrutinib. When I saw Dr Deardon at the Royal Marsden hospital just over 2 months ago, she said I wasn’t eligible for the FLAIR trial which was on-going at that time because my remission had been longer than 2 years. I was referred back to my consultant in Bath, and he is following her advice that I have six cycles of BR.
I tried to hold on as long as possible just in case any non-chemo drugs became available on the NHS, but my low HB and platelets mean I need essential treatment now. Crossing my fingers that all goes smoothly!
I'm sorry it didn't work out for you to get Ibrutinib. I can understand how much you hoped to avoid having chemo again...
Wishing you all the best as you start BR on Monday... Let us know how you get on. It does seem that BR is usually more gentle than FCR. Let's hope and pray that's the case for you,
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