Hello
I was diagnosed in 2016 and was ww until 2019 when I had chemo until now
My oncologist wants me to start ibrutinib now as my general condition has deteriorated
I’m 76 and my numbers are moving into not so good
What I read online about this drug is all over the map
It’s either wonderful or it will kill you
Can any of you with experience with this drug please tell me how it affected you
Thanks so much
Hi pughn,-
I suspect that the comment about Ibrutinib killing you was misinterpreted.
We have had over 4,400 postings that mention Ibrutinib / Imbruvica. You can see them all by clicking this link:
healthunlocked.com/cllsuppo...
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It has become one of the two favorites for first treatment world wide and most people get an immediate reduction of lymph nodes and spleen size when starting. About 25% of patients will get mild to moderate side effects and a portion of them cannot tolerate the side effects, and stop the drug to have the side effects stop quickly. But the remainder can see the side effects decrease over time. About 70% of first treatment patients get to CR (Complete Remission) or PR (Partial Remission). After a few years some patients reach MRD-U (Minimal Residual Disease- Undetectable / UnMeasurable) and can stop treament and not need further treatment for many years.
Ibrutinib acts as a blood thinner, and after a few years can cause rising blood pressure and/or a heart condition called AFIB. There are other similar drugs like Acalabrutinib / Calquence that have less effects on the heart and some other side effects.
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You can read many of the personal stories by looking for the box on this page labeled:
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Len
Hi Len,
I’m not sure if this is in the postings.
I just found it tonight. From Feb 2021.
Ibrutinib & venetoclax given together
nature.com/articles/s41408-...
Thanks for all you do and for how you and the other administrators contribute to our knowledge and order.
Diana
You are correct, but my answer was getting too long, so I did not expand into the other preferred drugs for first treatment- V + I (Venetoclax/Venclexta + Ibrutinib/Imbruvica) or V + O (Venetoclax + Obinutuzumab/Gazyva).-
There are several videos and presentations since the latest ASH & ASCO meetings talking about the results of clinical trials that provide proof that all these options (Ibru or Ven + Ibru) are superior to anything we have had in the past. And how the CLL experts explain the pros & cons of each.
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Len
Hi pugin, Ibrutin is a good option. It works well for most people of all ages. I react strongly and often negatively to many many drugs and managed IB for 4 years, but did start getting Afib about a year or more after beginning it, my blood pressure also went up and I did get blood marks on my arms when scratched or scrapped them. If I got a hit or bang I'd get a not bad black and blue. All these healed. Oh, for first few months I felt a nauseous at times which seemed be from reflux. But I'm very slim and light weight and when 10 months after starting Ib my consultant reduced my daily dose by one-third the nausea stopped and the reflux was rear. I want you to know that if I could not get Acalabrutinib, I'd still choose to continue to take Ibrutinib. I managed to live well and happily after my dose reduction. And IB did not affect my min, mood or Brain. It certainly reduced all my SLL and CLL SYMPTOMS VERY QUICKLY.
Oh, one other thing I cannot say for sure what caused it, but my hands and fingers had been fine and over this period I'd and still do on Acalabrutinib get roving pain and joint swelling in fingers. I may also have been stiffer in joints, but that could have happened anyway. Who knows what caused it. Also one funny thing, a tendon that seems to run across , laterally, the bottom lip got tighter and tighter. I changed to Acalabrutinib in late January this year and began noticing a few weeks ago to my amazement that was easing considerably. Impossible to know what caused this. But I'm getting older and .. do things like that just dissapeare for no reason we know of ??
If I had to do it all over, I would go for Ibrutinib again, decision made very end of 2016 and began Jan 2017. Now over 4 years later, I'm able to change to Acalabrutinib, and it's the better option. Is Acalabrutinib approved for use in your province? Last I heard nearly a year ago it was approved in Toronto but not in Vancouver.
Good luck, we're so lucky to have these options. Take care AND let us know what happens with you.
Thanks so much for your help I will likely start the drug in a few weeks and hope for the best
One big issue for me is that I am the sole caregiver for my wife who was diagnosed with PSP 2 years ago and is slowly but steadily getting worse
That’s why I am concerned about side effects affecting my abilities to help her
Thanks for sharing your experience
I am in Ontario by the way
I took ibrutinib for a couple of years. It got my Cll under complete control with only mild to occasionally moderate side effects. I did very well on it and worked full time throughout.
I switched to acalabrutinib because ibrutinib raised my blood pressure a bit. I am doing fine with acalabrutinib with no side effects to report.
Hi Pughn I'm Maureen from Ireland. I recently had blood tests several times and my WBC has been elevated each time- range from 12 to 19 Here in Ireland our normal no is 0-10 so my range is high I have recently been tested for CLL and am waiting a result I am on steroids for another condition and my family doctor put down my high WBC as being the culprit but as over a two year period its been up and down ii had last week a specific blood test to get a 'yes' or 'no' to CLL I am terrified as blood cancer was the last thought in my head My count is high i know but i comfort myelf thinking its caused by steroids How was your CLL discovered? Was a high wbc your first indication of having this disease etc Just wondering if your journey started with a simple blood test? Hope you dont mind my asking you these questions but my world has been turned upside down I am a young 63 years of age Maureen
Maureen, hi. I understand your concern, but please wait to get a definite diagnosis. It's true that CLL is often picked up in the course of testing for some other condition, but a raised white cell count alone doesn't prove much. The other blood tests you're waiting on should give your doctor a definite yes or no to blood cancer and hopefully identify a different cause.
If you do have CLL I suggest you write a post here. That will get you so much support and the very latest information, a wellspring of experience and knowledge far better than the outdated stuff you would find through Google.
BTW I am writing this 15 years after my CLL diagnosis and in remission.
All best.
Thank you so much for your kind reply Just found my way back here this am - Sat 2nd Oct. I got a definitive test for CLL and thankfully i do not have it! Hope you remain in remission and keep as well as you are doing Mo
Pleased to hear it!
I have been on Ibrutinib for four and a half years for my CLL/SLL. For me it worked immediately. I had gigantic nodes on my neck that disappeared within days. My lymphocytes started dropping quickly also and I had energy again. Previously I had been treated with FR and BR. I was amazed that I could take three pills a day and feel so remarkably well. I take them at 7pm in case I should have a reaction, I would be going to bed soon. As of yet, I haven’t had any negative reactions. I’m hoping it will continue to be a miracle drug for me. Wishing you the same results. Kindness always,Sally
Hi PughnI've been on Ibrutinib for just over 2 and a half years after 3 years of 4 different chemo's. Within 2 weeks there was an incredible difference. All my test are now within normal levels. The only side affects for me are weight gain, slight reflux every now and then and aching joints which come and go. I lead a totally normal life working full time plus my own business.
I wish you well.
I’ve been in Ibrutinib for 3 years. My blood tests are all normal and I feel much better than I did before I started it. My swollen nodes shrunk rapidly. I had a few minor side effects which didn’t last long except the brittle fingernails. I hope it works well for you too.
Hi Pughn
My experience was not so good but everyone is different. I'm a young 59 year old and was diagnosed at the age of 47. I only did 6 months of Ibrutinib as it caused me to go into AFib within 3 months of starting it. My heart rate was frequently at 200+ BPM which is not good. Because of the frequency I was told to stop taking them at that was at the end of January this year. I had episodes of AFib for a further month but nothing since.
Hi. I have been on IB for around 3 years now, It has transformed my life so much for the better. I do have aching joints but it is a small price to pay for the benefits. Word of advice, drink lots of water , it is important that you stay hydrated. Good luck and best wishes.
Thanks Everyone tells me that
But I will have to force it as I don’t like water
I guess I can mix with juice or fruits
Have you ever had your voice go horse
I’m delayed not starting ibrutinib until tomorrow
My biggest issue is weakness now
I’m caregiver to my wife who has psp
Life in old age is sure a challenge
I have never liked plain water but got used to very quickly due to necessity now i don't mind it at all.
You can keep hydrated with a variety of fluids, pughn. It doesn't have to be plain water. 
. I have 2 or 3 glasses of water a day, and the rest is other fluids.
Wishing you all the best as you start on Ibrutinib.
I had side effects when I first started Ibrutinib but it got much better with time. It's certainly done the job in controlling my CLL.
Paula
I've been on IBR now since April 2014 for SLL. Lymph nodes went down pretty quickly - they were internal so I couldn't actually see them. Aches & pains, yes, but not as frequent as when I first started. It's been a good drug for me. Age now - 73.
Hi. I have been on Ibrutinib for a couple of years now. It has really improved my quality of life. I do have aches and pains but will take that over how i felt prior to this treatment. Word of advice if you do start on IB = Drink LOTS of water. Best wishes.
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