Hi, I've just joined this forum and have read most of your posts and found them very useful. I have CLL/SLL and after 6 cycles of FCR (which gave me just over a year's remission) I'm now two weeks into starting on Ibrutinib as a mono therapy. So far no side effects. Is anybody else in the UK (as the drug is quite new here) taking Ibrutinib on its own and would like to share their experiences - how often you're tested, dosage, etc.
By the way, can you drink wine while taking Ibrutinib?
> By the way, can you drink wine while taking Ibrutinib?
Just don't mix it with grapefruit juice!
Haven't ever heard my doc mention it one way or the other. In any event I've been on Ibrutinib for 3 years and drinking wine - and whisky - the whole time. So far, so good.
Here is an article discussing drugs not to take with Ibrutinib. The one which caught my eye was ketoconazole, which as a topical cream is used for treating skin fungi and is available OTC in the UK. I wuld think the hazard of using it topically would be small compared to injection, but it might be best to find an alternative just to be safe. I hope you can view this article. Medscape is a subscription site but putting articles in print mode seems to bypass that. If you can't view it let me know and I'll try an alternative.
medscape.com/viewarticle/82...
PS. I'm in the US.
Thank you so much for your reply, LabRat. Unfortunately, I couldn't access the article but it's heartening to know that it's okay to have wine while taking Ibrutinib. I'm glad to hear you're doing well on Ibrutinib
Btw - instructions I originally got were to not take food 2 hours before or 1/2 hour after pills. I (attempt to) stay off the alcohol during that time.
Hi SycamoreN.
I too am on Ibrutinib as a mono therapy. I am on my 6th week. I live in the UK ( London area) and for the first 4 weeks had weekly check ups. Now it's down to 2 weekly. I take 3 x 140 mls per day. Excellent response - large nodes have greatly decreased and I have much more energy. I have had CLL since 2009 with various treatments ( FC, Campath, Ofatumumab) . Ibrutinib seems to be the most effective and trouble free. Re. Alcohol - no specific advice. I enjoy a few glasses of wine a week.
Hi Isambard, thanks so much for your informative reply. Ibrutinib seems to be working for me too along the lines you've described for yourself. My large nodes have also reduced even after only 10 days on the drug and I have much more energy now.
Btw are you part of a trial?
That 's good news. No I am not on a trial, but got the Ibrutinib on 'compassionate grounds' because I have the P17 deletion - and, I think , because nothing else had worked that well.
I have Bcell propholetic leukemia or PLL with p17 deletion. I’ve been on Ibrutinib since Mar 2015 as there was so much success on CLL. Ibrutinib recently caused AFIB n high BP in January 2017. I am a 76 female. I originally had no symptoms when a routine Test showed 150,000 WBC. After two months went on Ibrutinib. Took 3/day and this year take 2. OHSU visit every four months with BT on halfway through here in Corvallis. Definitely noticed the fatigue on third day on it. Have stopped it a couple times to take antibiotics and do start to have some energy, but fatigue returns when I restart. However was only nauseous for a few days in the beginning. Overall am feeling very good and work half days. And I’m fine till I’m not! When Ibrutinib doesn’t work will probably go to venoclax- unless there’s something better to try.
Can I ask you how much this monotherapy costs? I am also on this medication and since I am only 63 my private pay insurance is covering it. I do not know what I am going to do when i turn 65. A friend of mine had been trying to get on it but so far has been unsuccessful. He is 66. This concerns me because I can not afford the almost $10,000 per month it would cost 😁
My secondary insurance covers with a co-pay as I’m also on Medicare. If you meet their income restrictions the Leukemia Lymphoma Society will help. Good luck.
Hi Sycamore - was interested to note that you only had one year's remission following 6 rounds of FCR. Are you unmutated with slightly worse markers - because one year following 6 rounds doesn't sound very long?
I have completed 6 rounds and consultant is suggesting at least 3 years before more treatment may be required. (I know we are all different).
All the best for the coming months.
Hi Fieldmeadow, thanks for your reply. Yes, I know my remission of one year was disappointingly short, especially as my consultant had hoped for about 3 years. I don't know whether I'm unmutated with worse markers.... but as you say, we're all slightly different.
I hope you get a longer remission than I did and wish you the best of luck for the future.
Hi SycamoreN,
I am in the US and was an early Lab Rat enrolled in the Relapse and Refractory Clinical Trial at OSU. My Trial experience is still ongoing and is with Ibrutinib monotherapy. Be cautious in assessing side effects as we CLLers are quite uniquely damaged in ways that can express side effects as unique or worse than most patients if taken collectively. I had a rare dry irritated eye problem, facial angioedema, some mild diarrhea, brittle fingernails, tachycardia and A-Fib issues for about a year. My Onc talked about removing me from the Trial but I had such a positive cancer response that I lobbied to stay on. We did decide to reduce the dose from 420mg to 280mg which I have been on for about 2 years now. Altogether I have been on Ibrutinib for 37months and have no outstanding side effects other than brittle fingernails, occasional itching and maybe I don't heal as fast as I should from cuts. I am 71 years young and quite physically active.
A word on alcohol. I gave up drinking when my cancer became aggressive and because I have been in a partial remission, very close to a CR, I tried to get back to an occasional drink. With me I experienced joint pain and migrating arthralgias. Some people are reporting joint pain on Ibrutinib but I have never had that side effect unless I start drinking as little as a glass of wine three times a week, OK they might be big glasses but...(-; Believe me, I have experimented many times and tried to explain the pain by other factors but have come to the disappointing conclusion that alcohol is to blame):
WWW
Hi ThreeWs, thanks for replying with your experience which is very interesting and positive as a whole, except for the alcohol which seems not to be co-operating with you!! As you're so physically active I'm sure you're getting your pleasures in other ways. Good luck and long may Ibrutinib help you and the rest of us.
Dear Sycamore N
I'm a week ahead of you! Attend specialist in London and have been prescribed ibrutinib 420mg daily under the named patient, compassionate care programme. I had previously had lenalidomide in a trial that was halted last year, but no other treatment. I have 11q deletion, but don't have bulky disease.
Having been told to go away and come back in two weeks, the first few days were scary. I landed up in the local oncology unit on day 2 with a fever of 38.5. Haemoglobin dropped from 97 immediately before treatment to 85 - 89 and platelets dipped as well. I was treated for 3 days with iv antibiotics, although there was no evidence of an infection. I had a lot of nausea and struggled to eat.
Things have improved since then, I'm relieved to say. I'm still very tired and having to pace myself even more than usual. Appetite and nausea improved. Taste not right and I am not drinking alcohol as wine doesn't taste good, and I just don't fancy it. The diarrhoea I was warned about has failed to materialise to date.
I felt quite depressed the first ten days or so - largely I think due to feeling ill and being on my own at home with the isolation this brought. My haemoglobin is still low and I have been given the option of a blood transfusion, which I have preferred not to take at this stage. I am bruising easily, which I am told is directly due to ibrutinib, rather than to platelet count which isn't low enough to cause this. This is why, treatment with warfarin is not advised when taking ibrutinib.
Yesterday my total white count had fallen significantly (around 100,000 to 80,000, and so I am hopeful that ibrutinib will work its magic for me.
Good luck with your treatment and to others who've started on it.
Dear Charliegirl, many thanks for replying with your experience of Ibrutinib. I'm also on IB as a compassionate use named patient but unlike you, I've had no side effects so far. I'm sorry to hear that you felt so ill and depressed the first ten days but hopefully the worst is over for you now and you can start reaping the benefits of this drug which seems to hold a lot of promise for CLLers. The best of luck to you.
Hi Charliegirl,
I am also 11q22 deleted but had very bulky lymph in abdomen, chest and spine, such that it was thought that I might have a high grade lymphoma. A PET scan at Bournemouth where I was about to start the RESONATE-2 study (Ibrutinib v Chlorambucil) showed, however, that it wasn't.
I have now been on Ibrutinib for 11 months and my blood counts and chemistry, apart from platelets and Immunoglobulins, are all now back in the normal range. I experienced diarrhoea and bruising in the early days but these soon abated. The lymph in my abdomen, chest and spine are drastically reduced. Lymph nodes in neck, groin and armpits (axillae) rapidly reduced in weeks.
Sorry to hear your problems at the start but I'm sure, as you say, 'Ibrutinib will work it's magic' but it sometimes takes time.
Sycamore N, I hope this is helpful to you also. I'm sure it will work well for you, also.
Thanks Mikey47. Your reply is, indeed, helpful and I'm glad to hear Ibrutinib has worked so well for you. Have you been on Ibrutinib for the past 11 months as part of a trial? How often do you get checked?
I was attending every week during a screening period to make certain that I qualified for the study.
I then started the study in late September last year attending hospital every 2 weeks for 7 months, then every 4 weeks until the end of this month. Then in the second year it is every 8 weeks and only twice in year 3. I have blood tests and a physical at each 'study day' plus a number of questionnaires on a tablet and the dispensing of my next 28 days of the drug.
I have to record any possible side effects (which have been few) and register any over the counter drugs or supplements I am taking. I have CT scans every 12 weeks to monitor my lymph and I had a bone marrow biopsy at screening and am due another in the next month.
It's quite a strict protocol and they have refused to let me have MRI scans instead of CT for monitoring, which I am a bit peeved about. Anyway that's another story. (See the posts by Wayne (3Ws) on CT scanning).
I have to say that if it weren't for the frequent hospital visits, I wouldn't know that I have CLL. I have a very good team around me at Bournemouth and a research nurse contact.
I wish everyone on Ibrutinib the same outcome.
Good to hear from you, Mikey47. I'm glad that ibrutinib is working for you and that initial side effects wore off.
I continue to feel better and have even renegotiated my house and car insurance - saving a substantial amount! I had not had the energy to attend to being over charged for several months.
Dear SycamoreN
Many thanks for this thoughtful and supportive reply. I am beginning to think that things are actually better than pre-treatment. I'm certainly feeling much brighter and have managed to make the effort to catch up with friends.
I hope all goes well with you and that you'll really benefit from the ibrutinib.
Kindest regards
Charliegirl
I've just completed 13weeks on Mono Ibrutinib 420gm daily in London.
I'm taking Immodium on a daily basis just to make sure I can manage my movements are ok.
My visible neck lymphs started coming down after a few weeks.
My white cells jumped from 60 to 260 very quickly and started coming down after about 8 weeks.
I had plenty of fatigue in the nine months prior to starting and recently that has felt better, but this is not necessarily treatment related.
I still have bad night cramps in calves and ankles - the last time these disappeared was soon after my FCR treatment 3 years ago.. I am hoping they will go when my white cells come down.. my hematologist doesn't really want to get involved.
It is really nice to make contact with other London patients to monitor things as the treatment progresses and as possible alternatives come up further down the line...
Thanks for being there.
Oliver
58yrs male
diag 2008
FCR 5 rounds Sep 2010
Hi Oliver, thanks for your reply and I'm glad your glands are starting to go down.
Are you taking immodium because diarrhoea is still a problem even after 13 weeks of being on Ibrutinib?
I think the increase in white cell count is consistent with taking Ibrutinib; my consultant warned me it'd happen, which it has. However, I believe the relief from fatigue you're experiencing may be due to Ibrutinib. I've found that my energy levels have greatly increased since I've been on the drug and a few people have also posted on this site testifying to increased energy levels.
It's interesting that you mention calf cramps. I've also had quite bad calf cramps since I started taking Ibrutinib but I haven't attributed them to the drug nor to excessive white cells....? I wonder if anybody else has had this experience?
Are you taking Ibrutinib on the compassionate use programme?
hi, My husband has leg and hand cramps, but he takes a banana and about 1 litre of tonic water every day which help.
21st August is decision day for my husband and Ibrutinib............ our main concern is he will have to change from warfarin to heperin injected twice daily, the risk of internal bleeding still exists however........ but, given he is p17-deletion and can only have steroids which have already given him four compressed vertebrae fractures, the options are limited. Overall, I guess he has decided he wants to give it a go......... He is 74, young at heart, endured numerous health issues over many years, many surgeries and A and E admissions
the risk of a major bleed we are told for his condition is 2%..... overall I feel he is very fortunate to be offered this opportunity, after all everyday life is a lottery, will the next bus coming along the road get us??
Hi Lartington, thanks for the tip for cramps. Best of luck to your husband on 21st August.
Hi, I start Ibrutinib tomorrow as a monotherapy on the UK named patient basis. I know this scheme has now closed, but as I had a TIA 5 years ago my consultant wanted a brain scan before I started the treatment to be sure there had been no change.
I am to take 420mg (3 capsules) ONCE daily - I see others take one capsule 3 times daily. I see others take one capsule 3 times daily. Is the full dose at once, usual? I am to see my consultant again in 2 weeks.
History:
* 2001 (November) diagnosed with NHL (Non Hodgkins Lymphoma)
* 2001/2 and 2003/4 Chlorambucil twice, with relatively short remissions
* 2004/5 RCOP (Retuximab, Cyclophsphamide, Vincristine aka Oncovin and Prednisolone) - 5 years' remission.
* 2010/11 Fludarabine and Cyclophsphamide - Retuximab then not approved by NICE for 2nd time treatment and my insurance company refused to pay (I've since ditched the insurance company!). The FC was unsccessful.
* CLL diagnosed, with p53 deletion
* 2011 Campath - 3 years' remission
I'm new to this forum and appreciate the information you all provide!
the typical dose for cll is 3 tabs all at once at the same time everyday. I don`t know of anyone spreading the dose out I wish it was 1 tab 3x day maybe side effects would be lessened! I`ve had to drop to 2 tabs(280mg)day on several occasions because of red hot rash with swellings everyday hands,toes fingers,ankles etc for almost 2 months. this is really the only bothersome side effect
It's important to maximise uptake of the Ibrutinib by CLL cells, hence the importance of taking the full dose once per day. When in the day is worth experimenting with to see if you have less side effects...
I agree with Neil...ibrutinib works very rapidly and you need a 90% signal blockaide...
I was on it briefly and found taking it before dinner at about 5 pm was the best time for me... taking it early in the morning caused a day of diarrhea... and before bed effected my sleep...
Try changing the time, but take all pills as instructed at one time with a lot of water... two or three glasses...
~chris
Chris,
Oddly Dr Furman has said he tells his patients to take it at night with only a sip of water to minimize GI issues.
Maybe you tried that and that's how you experienced sleep issues
It seems the one constant is that nothing ever is the same for everyone.
im not on Ibrutinib now so I probably should have minded my own business. 😃
Jeff
Well ... the one constant in CLL is that there is no constant. 😳
I have been on Ibrutinib as a first line monotherapy treatment since March. My numbers are going in the right direction and I have totally tolerated the medicine. No side effects to speak of although my stool and urine has had a different odor. The stool I can understand admit is mostly excreted in the stool. Has any one else had a really strong urine smell with Ibrutinib? My oncologist suggested I ask my support group 😉
I have noticed a strong urine odor on all my treatments, including ibrutinib... perhaps to do with kidneys clearing B cells..., I don't know...but keep very well hydrated, at least 2 litres of water a day preferably more...
You should monitor the colour of your stools, if they start to get dark and tarry looking advise your haematologist immediately or go to your GP for a stool test called FOBT or FIT...
Changes in stool colour can mean colon bleeds... something I experienced on Imbruvica (ibrutinib).
~chris
Stopping Ibrutinib
Ibrutinib and Covid 19
Taken off ibrutinib
Ciprofloxacin and ibrutinib 
