UK CLL Forum, UKCLLFORUM

Major significant breakthrough in the treatment of CLL

Topic Made On: Apr 18, 2014 04:30pm
Kevin

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Hi all,

Only been on the site a while and this is my first post. I have put some info on the patients profile page about myself.
My question is has anybody else seen or knows about the new drug 'Ibrutinib'? I noticed an Item on the BBC news website yesterday entitled 'Leukaemia: Cardiff University breakthrough in disease treatment' The link is at the bottom of this entry. hope it works ok, else cut and paste it into your browser. It sounds like some very promising news on the leukaemia front.
This news item on Chronic lymphocytic leukaemia (CLL) is about a new drug treatment (Ibrutinib) which effectively arrests the progression of the disease so patients will be able to live with a normal age-adjusted life expectancy. It sounds too good to be true and I have not been able to find out very much more about the treatment over and above what the BBC news article stated. Does anyone else on this forum have any other details or information about this drug/treatment?
I myself am still on watch & wait two and a half years after my last (and first) chemo session consisting of six courses of Fludarabine phosphate, Cyclophosphamide, and Rituximab (FCR) once a month from April until September 2011.

http://www.bbc.co.uk/news/uk-wales-27073711

Take care

Kevin





Replied On: Apr 20, 2014 07:19am
Admin

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Kevin,

I've been on Ibrutinib for about 19 months now. I am on a trial from Ohio State. It's working so far with small side effects. My white count is down to 19 and the rest of the blood work is within normal range. I'm not sure what the long term effects will be with this but I hope to never have chemo again. I was dx about 8 years ago and have been on every kind of chemo and another clinical trial but this is the only thing that has worked for me. I know it was FDA approved in the States. Hopefully it will come your way.

Mary



Replied On: Apr 20, 2014 07:20am
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Heard about this TYPE of drug being trialled in US a couple of years ago at a CLL conference in Oxford where Anna Schuh was the main speaker. It only targets the rogue cells so leaves the rest of the immune system intact, early trials showed time limited flu like symptoms but no other troubling side effects.
Exciting but not sure if suitable for all of us. depends how you are rated , I believe.
Go Go, Slow Go, or No Go. Depends if you have multiple morbidities, I think
Regards,
Irene



Replied On: Apr 20, 2014 01:53pm
Kevin

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Hi Mary,
Thanks for getting back to me so promptly. Sounds like the person whom you are representing is doing very well on Ibrutinib, especially as he has tried so many other chemo based solutions in the past. I wish him every success with his latest treatment. Although I have only had one course of chemo (FCR) it really took it's toll on me when I contracted neutropenic sepsis. Apparently this new treatment has none of the toxic side effects of chemotherapy. The latest news I have heard about it's release in the UK is later this year, so I wait in hope. I have my watch and wait appointment soon so I should find out more about this new treatment and my legibility then.
Kind regards
Kevin



Replied On: Apr 20, 2014 02:18pm
Kevin

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Hi Irene,
Thanks for your prompt reply. Your comment about seeing this 'TYPE' of drug being trialled in the US a couple of years ago got me thinking and I have been doing some online research into the drug Ibrutinib. When I saw the announcement for the drug last Thursday (17th April) on the BBC wales website by Cardiff University it sounded like drug had just been discovered? After some investigation it appears that like you say it has been used in clinical trails in the US for a couple of years now and has shown some very promising results. So I am a bit confused about the Cardiff university announcement. It looks like the university found the mechanism by which the rogue cancer cells operate and then developed a drug to inhibit this mechanism called Ibrutinib? Am I missing something here (I often do!)? Is it that they did all this two years ago and have only now announced it to the world after the success of the trials?
Kind regards
Kevin



Replied On: Apr 21, 2014 09:57am
Domineys

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Hi

My consultant told me about Ibrutinib recently because my CLL is just starting to relapse again. I've had Chlorambucil (twice), RCOP, FC and Campath in the past and with p53 depletion there aren't many options left for me at present - more Campath or perhaps Bendamustine. So my NHS consultant was very positive, and in fact quite excited, when he talked about Ibrutinib as my CLL is what you might call recalcitrant! He has one patient on it already as a participant in one of several UK trials and he is responding well. My consultant thinks it will be approved later this year or early next. If I don't need treatment till then he thinks I could have it. It sounds very promising. The media tend to present medical things as "new" even if they've been in the public domain for some time - we just need to know where to look and that's why this forum is so helpful.

Best wishes to all.

Ann



Replied On: Apr 21, 2014 12:31pm
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It's really been over 4 years the trial has been going on. It's just recent that it been FDA approved.

Mary




Replied On: Apr 21, 2014 12:32pm
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Kevin,
Couple of useful links for you to google.
Dr Anna Schuh is a consultant haematologist who specialises in CLL and chairs a research group very much on the leading edge of human molecular biology. She is known at a global level and has an in depth knowledge of this breakthrough. My guess UoW have focus on a particular enzyme which if you have it in your body means your CLL progresses more slowly and therefore would interact helpfully with this new drug. More and more genetic sequencing is used to design the treatment each of us needs.
If you belong to CLL support group, keep an eye on the Conferences and try to get to one with Anna speaking, she is inspirational.
Good to be in touch,
regards, Irene



Replied On: Apr 22, 2014 07:54pm
Kevin

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Thank you so much Irene. I have made some searches online for Dr Anna Schuh and have found lots of interesting reading to keep me both informed and occupied.

Best wishes

Kevin



Replied On: Apr 22, 2014 07:58pm
Kevin

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Thank you for your response Ann, I really hope this drug is the treatment that will turn your life around in the future. Sounds like you have had a bit of a rough time of it in the past.

Take care

Kevin



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