Hi all,
I have just started treatment of Ibrutinib (4 months) and wondering generally how long people are on this for? I know this is a ‘how long is a piece of string’ kinda question, but stupidly went onto internet and it said median length of time was about 4 years! Of course I am now in a panic about what happens after the 4 years!!
Suzanne x
Suzanne, to my understanding, no one knows how long we can take ibrutinib before our Cll progresses.
The 4 year stats you were looking at likely includes relapsed Cll cases that are harder to treat. Around 70% or so of people who took ibrutinib as a first treatment have not progressed in 7 to 8 years. I forget the exact numbers and time frame, but that’s pretty close.
It begs the question of whether some people will ever progress on ibrutinib. Certainly even now people who start Cll treatment in their 70s might never need another drug.
I doubt you will be on ibrutinib your whole life as you are so young. But it might be you stop not because you have become resistant to ibrutinib but rather that the standard of care will change where we see drugs added to ibrutinib, like venetoclax, to get people into long drug free remissions.
You have options if ibrutinib stopped working now for you. Statistically, looking forward, it’s a fair bet over 50% of those who took ibrutinib as a first treatment will not have progressed at ten years out. By then, for those that do progress, there will be that many more options with all the Cll drugs in the pipeline. We were unlucky to get Cll, but are fortunate that pharma companies see us as a big enough market to spend millions on research and development.
I know I can drive myself crazy worrying about how long my meds will work, but I am at my best when I can park all that somewhere in my brain so I can get on with life while I feel well, which might be indefinitely. I am on acalabrutinib now, but started on ibrutinib.
Thank you Jeff, great info! I guess I’m having a ‘wobble’ today!
We all have our Cll induced wobble days Suzanne. I had a bad wobble day just this Saturday, but in thinking back my wobble probably started when I uncorked that second bottle of wine. 😎
🤣
You are not alone. When I was searching the internet, I also found that the average length of time, after treatment has started and until relapse was around 40 months, Then I discovered that further advanced treatments , after relapse will give one another 6 months. Am assuming that these average time estimates represents a large range of different types of CLL sub-sets. It was anticipated that I would need to start Ibrutinib in a couple of months due to large lymph nodes in my neck. But yesterday and after a review of my recent PET scan, it was determined that I can continue on the watch & wait protocol, at least for a little while longer. I am 13q14.3 deleted, mutated IvGH, and ZAP-70 negative. Note that reading the internet can be dangerous. Please try to relax a bit and let the experts on this website answer your questions in a responsibe way. CLL is a battle. Try to fight it with honor and determination; fear will then subside. I have found over the years that this website is, by far, the very best place to go for information on CLL.
Thanks Mark
Hello Suzanne, I am in my 50’s & started Ibrutinib 5 years ago after being on watch and wait for 9 years. My most recent (2 months ago) blood test were “normal” and my lymph nodes are not showing signs of enlargement.
That’s sounds very promising! Thank you! I am 51 and had 10 years watch & wait. How long did it take for your bloods to reach ‘normal’?
Hi Suzanne1970,
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Some patients have taken Ibrutinib for several years ( e.g.: 3 -7 ) and reached MRD-U (Minimal Residual Disease - UnDetectable or UnMeasurable) and were able to get long remissions afterward. Other patients have become resistant to Ibrutinb in far fewer years and switched to other drugs like Venetoclax. Some patients (like me) had side effects and had to stop Ibrutinib in the first year.
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Bottom line is the statistics only apply to hundreds of CLL patients, but each of us responds differently to all the available drugs. So medical science cannot predict what result you will have with Ibrutinib or any other drug. The good news is that almost all the side effects stop when you stop taking Ibrutinib. And there are many other effective drugs available.
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You may want to read this posting and all the 31 replies.
healthunlocked.com/cllsuppo...?
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They primarily talk about Venetoclax / Venclexta, but I thought the overall discussion might help you.
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Len
Thanks Len, very interesting thread
Hi Suzanne,
I have been on Imbruvica for over 4 years and doing well. I'm a nurse and was speaking to a patient who was on it for 10 and doing great. So hang in there. I know I am. I am only 59 years young!
Great to know! Thank you!
I am in the middle of my 5th year on Ibrutinib and all is well. Side effects (joint pain, mouth ulcers) settled down before the end of the first year and I reached MRD after about 2.5 years. I have regular blood tests every 3 months with my check up and apart from low Lymphocytes every this else is OK. Hang in there! We are indeed fortunate to be on a drug that is so successful
Good to know! Thank you x
Quick question: What tests were used to determine MRD?
Bone marrow
Ibrutinib was FDA-approved in February 2014. I've been on it since April 2014 and continue to do fine. I was diagnosed with SLL in Sept 2013.
That’s great!
I began Ibrutinib 5 years ago and my blood work is the best it has been. If Ibrutinib fails there are other choices.
Great news!
Starting my 5th year on Ibrutinib. Not MRD neg but great bloodwork and no CLL related issues. Will stay on it until it stops working or it causes other issues. Only on 140 mg daily!
Fantastic Becky! Thanks x
My husband has been on ibrutinib for 7.5 years as his first and only treatment. Doing very well.
That’s great to know, thank you x
Good luck with your treatment and I hope you do very well. I've been on Imbruvica now for over 5 years. I never had any side effects from it, except maybe high blood pressure, but I can't say that for certain because I also gained weight and have had some traumatic events happen during that time that could have raised my blood pressure. I see the oncologist every 3 months and my GP every 4 or 5 months. Blood work is OK, not great, not bad, but the oncologist doesn't seem worried so I won't worry either. AND, we are all different in the way we respond to different drugs, but I do wish you the very best!!!!
Thank you x
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