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Root Forum :: Treatments :: Ibrutinib
Topic by Heather on Jul 30, 2014 01:52pm

I have been lucky enough to be prescribed Ibrutinib and thought I would share the experience.
I was diagnosed 13 years ago and over the years had a lot of treatment. I have had Chlorambucil, which didn't achieve any sort of a worthwhile result. Next came Fludaribin which gave a 3 year remission. I then had FCR followed by a 2 year remission, followed by Bendamustine/Rituximab, and an eighteen month remission. Last year I had Ofatumumab, which brought my white count down but didn't sustain it.
So I arrive at Ibrutinib, which I have obtained under the named patient supply route. I am now on day 12 of the treatment and have to say that after a few minor side effects I am feeling very well. Although its very early days the lymph nodes in my neck appear to be shrinking which I hope is a good sign. I will endeavour to keep you informed of my progress and in the meantime would like to send my best wishes to anyone else embarking on this treatment. Regards Heather

Reply by Kevin on Jul 31, 2014 10:14am

Best of luck to you Heather, We are hearing great things about these new CLL fighting drugs and Ibrutinib looks extremely promising. Looks like you deserve a break with all the treatments you have had to endure over the past years. I will keep my fingers crossed for you, take care.

Regards Kevin

Reply by millymay on Aug 15, 2014 07:24pm

Strangely my real name is also Heather. I have been asked if I would be prepared if selected to, I am well have no symptoms other than blood results.It seems that I am a good candidate because I am 'well' I am due an appointment on 4th September to talk to 'the team' and see if I have been accepted. After reading your post Heather I hope I am accepted.
Thanks for posting

Reply by millymay on Aug 15, 2014 07:26pm

I seem to have messed my post up a bit, that what comes of adding bits afterwards.
It should read I been asked if selected, to go on a trial of Ibrutinib

Reply by Heather on Aug 19, 2014 12:22pm

Quick update - I am now one month into the Ibrutinib treatment and am delighted to say that I feel very well, all side effects seem to have disappeared and so have my swollen lymph glands, in fact when I had a check up last week my consultant couldn't find any. My bloods are as they would expect at this stage and my energy levels are excellent. So, so fare so good. Regards Heather

Reply by Kevin on Aug 20, 2014 07:25pm

Hi Heather,
So pleased the Ibrutinib treatment is working out for you and that you are feeling well too. It's refreshing to hear some good news on these forums and I hope things continue to get better for you.

Regards Kevin

Reply by jackie on Aug 20, 2014 10:29pm

This is my first post on this site. I was diagnosed with cll in 2005 aged 50. After 4 years on watch and wait I began FC plus 2 doeses of rituximab in 2009. After 3 years remission my cll transformed into Richters (with very enlarged, bulky nodes everywhere). I had 6 rounds of CHOP and Ofatumumab (Anna
Schuh's trial). The chemo finished in january 2013 and the ofatumumab in November. Been back on watch and wait however re ently experienced sweating and fatigue. A ct scan has revealed that my nodes have enlarged again since last scan in january. Had a axillary node biopsy last week and am awaiting the results to see if the richters has returned or whether it is just the cll -sll. If it is R, my consultant said I can have ibrutinib.
Interesting to read your positive comments Heather about your experience so far on ibruitnib. What part of the country do you live ? Im in birmingham.

Reply by millymay on Aug 21, 2014 08:43am

Heather, so good to hear your treatment is working out so well. So hope I will be accepted for the trial. Pleaase keep us updated with your progress.

Reply by Heather on Aug 21, 2014 05:29pm

Jackie, I live in Worthing on the Sussex coast. If you're consultant thinks it will work for you I do hope you get the Ibrutinib as it seems such a good treatment. Look forward to hearing about your progress, and I will try and keep everyone informed of mine.

Reply by jackie on Aug 22, 2014 07:46am

Thank you Heather. I will also post updates. All the very best to you.

Reply by kestrel on Sep 01, 2014 09:07am

Hi Jackie I too am on Ibrutinib for one month now.I can only reiterate what Heather has said regarding this amazing drug.My lymph nodes have reduced considerably I have energy levels I've not had for years.I had FCR and then Campath none on which had results like Ibrutinib.I along with Heather I'm sure pray that these effects continue,and that Ibutinib will be available to all that may need it.Jackie I hope you are accepted on this trial,but be persistent in asking for it.I wish you all well.Regards Lee

Reply by Nick on Sep 02, 2014 09:46am

Hi All

With the UK Ibrutinib compassionate access programme planned to close to new participants at the end of this month it is encouraging to receive news of new UK clinical trials that may provide access to other groups..

"The National Institute for Health Research (launched a campaign in May this year entitled "OK to Ask", encouraging patients to ask their doctor about clinical-research opportunities and whether taking part in a research study might be the right step for them as part of their care programme.

We want patients to know that research is happening in the NHS and to enable them to have access to information about local opportunities and to feel empowered to speak to their doctors about the possibilities, commented the NIHRs Simon Denegri. This campaign is about getting that conversation going, and letting patients know that they don't have to wait to be approached by their doctor or nurse."

If you are approaching treatment it's OK to Ask your doctor about a clinical trial.

You may interested to know that the latest CLL trial, FLAIR, opened last week in Leeds and we should start to see this opening at other hospitals around the UK in the next few weeks.

FLAIR: Front-Line therapy in CLL: Assessment of Ibrutinib + Rituximab to asses whether IR is superior to FCR in terms of progression-free survival

Participants will be randomised on a 1:1 basis to receive either FCR or Ibrutinib+R.
Planned Sample Size: 754; UK Sample Size: 754

This is the latest of the new kinase inhibitor trials that are now open. Others include
IcICLLe: (recently opened) Ibrutinib

layman summary

For other UK CLL trials info: NCRI study group portfolio map PDF

UK Clinical Trials Gateway:

If you are approaching treatment and interested in a trial, now would be a good time to
chase this up with your doctor.

Reply by Heather on Jan 06, 2015 10:24pm

Hi all, I am now into my 7th month on Ibrutinib. I am well, with a good appetite and loads of energy. My white count is still a little high but is slowly coming down and all other blood results are normal. I have no enlarged lymph nodes and my spleen is of normal size. At the moment the drug is doing a great job and I hope that it continues to do so. I also hope that anyone else out there on this drug is doing as well as I am.
Happy New Year to you all. Regards Heather

Reply by chandaj42 on Jan 14, 2015 04:36pm

Hi everyone, my first post. May I start by saying how mature and adult the postings have been. Quite a difference to what I normally read on Facebook et al!

My CLL was diagnosed in 1992. My bloods stayed incredibly stable until 2006 when I started FC and then, in 2010, ofatumamab. I relapsed in September last year and was put on a course of Ibrutinib. Well, what a difference this has made. I already knew about Ibrutinib from the excellent US website, Patient Power (which I can thoroughly recommend to anyone with CLL), so when my Consultant, here in Birmingham UK, spoke to me about a trial, I jumped at the opportunity. No more chemo, I thought!

My whites are the lowest they've been for years and my Hb is now 16. No swellings anywhere and I'm feeling fine. I've watched the videos and interviews from the recent ASH (American Society of Haematologists) meeting in San Francisco and was thrilled to hear so many CLL experts (normally the most cautious and dour of people) describe the current CLL scene as the most exciting they've experienced, with so many new and successful drugs coming through. So, friends, there is hope. Keep the faith. Best wishes to all. Alan.

Reply by lesleyandrea on Mar 18, 2015 08:33am

Hi Everyone. I'm so glad I read these posts today. I have an appointment this afternoon with the Consultant who will be running the Ibrutinib+ Rituxanab drugs trial which is due to open and I will be told if I have been selected to go on this new trial for people who have had no previous treatment but now need it. For 18 months I've fought tooth and mail to get on this trial and avoid chemo, putting my hand up for several medical trials which I knew would have no benefit to me personally but just for research, to keep my name out there. But now I may get the chance I've got a serious case of cold feet. I think I'm being influenced by a friend who sailed through chemo (FCR) and for the time being he can put it all behind him whereas on Ibrutinib the treatment will be ongoing for many years.

You've strengthened my resolve to say ''yes' if given the opportunity. Best wishes to you all. Lesley

Reply by Pennycam on Apr 11, 2015 08:42am

Hello, so glad to be able to read about other peoples experiences on here. I too started Ibrutinib 4 days ago and already I am seeing a massive reduction in lymph nodes- it is like a miracle. No side effects at all so far although it is early days. Ibrutinib= hope for the future.

Reply by on Apr 11, 2015 06:37pm

Hello, so glad to be able to read about other peoples experiences on here. I too started Ibrutinib 4 days ago and already I am seeing a massive reduction in lymph nodes- it is like a miracle. No side effects at all so far although it is early days. Ibrutinib= hope for the future.

Reply by kestrel on Apr 12, 2015 09:48am

Hi Everyone,I thought I'd bring you up to speed with my treatment on Ibrutinib which I started last June.I went to see my consultant to discuss my recent CTscan and the ongoing progress on Ibrutinib!The news I got was fantastic.I was told that all the tumours throughout my body on which there were many had almost all disappeared,and that my WBC,was actually normal.WOW! WOW!.I can only tell you all that since I went onto Ibrutinib my life has changed for the better.I don't know for how long this may last,but I'm truly grateful to this fantastic drug.May I wish you all well,and for those lucky enough being prescribed Ibutinib.I wish for you the same results Lee :

Reply by Pennycam on Apr 15, 2015 09:00pm

Congratulations Kestrel, great news that you have had such a great response from Ibrutinib. How often do you have ct scans? Do you have any side effects from the drug? Stay well

Reply by chandaj42 on May 25, 2015 11:35pm

Hi everyone, just thought I'd bring you up to date with my Ibrutinib trial. As advised earlier, I started in Octopber 2014 and immediately saw improvements in all the general indicators. My recent appointment with my Consultant confirmed the progress; excellent Hb and WBC. Not only that but absolutely no sign of node enlargement. I'm feeling fine although do seem to have succumbed to eczema (although this could be due to factors outside of CLL treatment). Patients who have been on the trial longer than me seem to have experienced positive results too. Early days but everyone at the clinic seems to be enthusiastic about Ibrutinib. There's hope fo us all! Cheers and good luck to everyone. Alan

Reply by lartington on May 26, 2015 09:50am

Hi, thought I would update you on my husband's Ibrutinib experience. He started in September 2014 as a named patient trial. 3 tablets per day, two weeks later he got shingles and had to come off Ibrutinib, 5 weeks later he got shingles again. eventually started Ibrutinib again, since then he has been off it 3 further times due to surgery (you have to stop Ibrutinib 7 days prior and 7 days after) 8 weeks ago he had a blood transfusion. His general quality of life is not good, he has acute fatigue, sleeps approx 12 hours every night, plus a couple of hours each afternoon, he is lethargic, wobbily and frail, he has lost 4 kg in the last month. We are heading back to the hospital today for more bloods, possibly another transfusion is needed. Ibrutinib for him has improved most of the blood levels, but he feels wretched. maybe it is not for him. hope you all have more success.

Reply by Dabbling_pdp on Sep 11, 2015 02:15pm

I started Ibutrinib just over a year ago on the compassionate patient program. Last week I understand the UK Cancer Drug Fund decided to withdraw the drug by November 1 for new patients.
I am sure this is primarily on economic grounds.

In my own case I started with 3 140mg tablets per day but reduced to 1 per day after liver function tests showed high values. The results of the drug have been generally very positive.

Reply by clover28 on Sep 28, 2015 04:52pm

Hello I am new to this group have never posted before. My partner was diagnosed with CLL in 2012 at the age of 57. Chemo was started within 3 months of this diagnosis. He had FCR for 6 months which we both really struggled with as he was really ill most of the time. Anyway it gave us 3 years free of treatment. At his last normal six monthly check up his white cells had doubled so next check was at 2 months. We have weighed up the options and feel very lucky that our consultant has agreed the use of Ibutrinib today before it is withdrawn in November. I would really appriciate any feedback / advice you can give us. Also how are you all doing ? I hope you are all well. Many Thanks for reading this .

Reply by steve y on Oct 01, 2015 09:19am

Hi Clover 28
My story is very similar to your partners regarding dates , age and I am now in remission after my first round of FCR which finished in January 2015.
I am now on watch and wait and see my consultant every 3 months.I was appalled when I heard that Ibrutinib was to be removed as a NHS drug as I, as I guess many others looked at this drug as hope for the future. I am told my Leukemia will return , in an average of 6 years but guess looking at your partners 3'year remission this could be less, I had not considered that before now, always believing 6 years was the minimum. I will keep positive though and wish your partner all the best. I too found the FCR hard but feel great now, long may it continue.
Ps excuse any typos trying this in my phone.

All the best

Reply by Wendymc on Aug 01, 2016 12:46pm

Hi my husband has been taking ibrutunib for 2years now, he suffers from mouth ulcers, lesions on his head, leg, arms in his ears and a huge one on his left hand which has now turned into a skin cancer. All side effects from the drug. He has now been told the ibrutunib might not be working as it should. He is very very down at the moment and needs lots of support , I can only give so much as he is a typical male and doesn't like to talk about it, if we ask him how things are he always fine, when I can clearly see his not.
Has anyone else been through this , or can help with any information , or just maybe talk to him as he needs to share how things are with someone maybe going through a tough time. As I think that would help him more than I can as you know how it feels. Thank you Wendy. Maybe you could email me and I can pass it on to Ian. He is 64, was diagnosed with CLL in 2005. Was in remission untill 2013, still works full time

Reply by chandaj42 on Aug 02, 2016 10:18am

Hello, Wendy. I have similarly been on Ibrutinib for two years, just short actually. The one side effect I have experienced is AF and I am taking an anticoagulant, apixaban, for that. This apart, ibrutinib has given me a new lease of life. I still work full time and run my own business - something I was thinking of giving up not so long ago because of my CLL. Other possible side effects of joint pain could be put down to other drugs or even my age - I am 70 at Christmas. My Consultant tells me my blood tests will tell the full story; if anyone was looking at the results of recent tests, they would not know I'd had a problem with CLL or any blood disorder. My Hb is 17.3 and steady and MRD gradually going down. Liver and kidney functions are fine.The thing to tell your husband is that Ibrutinib has been marvelous for some patients so maybe he has to persevere a little longer. Even if he's taken off it, there are plenty of other treatments out there. Just a case of finding the right one. My CLL was diagnosed in 1992! I had FC chemo in 2006 and when I relapsed in 2010, I had ofatumumab. The point I am making is that my hematologists have kept me going and now I'm on Ibrutinib which is called a wonder drug in some quarters. Whether it is or not, we are in good hands in the NHS. So really, chin up and keep going. Hope these few comments help. Unfortunately, I can't see in which part of the country you live but would willingly call and discuss. Alan

Reply by Wendymc on Aug 03, 2016 07:35pm

Thanks for that, we are in Northaptonshire, Ian attends Addenbrookes in Cambridge.
We saw a Dr in clinic yesterday and are feeling a bit more positive , seeing the specialist next month, on wards and up wards . Wendy