Hi everyone I am looking for some clarity here. I started IMBRUVICA a few years ago and all is well so far thank goodness. What I’m wondering is: it seems from what I’ve gathered here that V and O is fixed term and causes remission back to watch and wait while those of us on IMBRUVICA are on it indefinitely. My oncologist said it’s best to stay the course as in if it’s not broke don’t fix it. I’m wondering why I don’t start on V and O or why he chose to go with IMBRUVICA over V and O? I initially started with rituximab and shrank my nodes then went on Imbruvica after a few months and here we are. I had it pretty bad at first prior to the chemo but have responded well. Thoughts and opinions ?? I’m nowhere near as knowledgeable as many of you and seeking to learn.
Best and Thanks
B
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Hi I have been on the Flair trial for 6 years, on ibrutinib, which has been great for me. I am now on he Static trial, 50% on ibrutinib 50% off. If bloods show the need it’s back on ibrutinib. I am randomised to intermittent.
I could have gone back to watch & wait and waited until I became ill enough to get another short term treatment like V & O. I choose to stay with ibrutinib for 2 reasons:
1 Research suggests your first treatment works the longest in terms of time to next treatment.
2 Luke your consultant I feel if it isn’t broken don’t fix it.
This leaves V & O and other new treatments as options for the future.
I prefer being on trial as you are well looked after and the outcome of trials help in our understanding of the disease and the development of new treatments.
I hope my experience helps. It’s not an easy decision.
So your team determined that it’s ok for you to reduce your ibrutinib intake from once a day to once every other day? Can you tell me a little about that ? Thanks so much
No, I drew the arm of the trial that takes me off ibrutinib intermittently. I will go back on full dose if my bloods show I need to, the trial have criteria for off and on ibrutinib.
You had to be in full clinical remission to enter the trial but not sure of criteria to return.
If you put Static trial into google it should give more information. You didn’t say if you were receiving ibrutinib on a trial or via the NHS?
I’m in the states so it’s all just going through insurance .. thanks for your info I actually reached out to the trial coordinator to see if I could stay updated. Best of luck to you I do feel the ibrutinib is working wonders and am grateful, and hopeful that intermittent also works well for you
Thank you. I agree about ibrutinib it’s been great for me. Some people in the U.K. have done well on reduced ibrutinib on and off trials. It’s worth a try if price is a problem, but would need to be discussed with your team and insurers. The price in U.K. is high too. You can only get it on NHS as a second line treatment. I got it first line on the Flair trial. I would have had to have chemo off trial 6 years ago pre O & V etc. let us know how you go.
A study comparing intermittent with continuous treatment with ibrutinib in chronic lymphocytic leukaemia (CLL)
Who can participate?
"830 patients will be enrolled into the STATIC trial. These patients will be made up of patients who have been treated on the NHS with Ibrutinib as their second or subsequent treatment for their CLL as well as those who have been treated in another study called the FLAIR trial."
Where is the study run from?
University of Leeds (UK)
When is the study starting and how long is it expected to run for?
Hi Ann. I have been on flair for 6 years, on ibrutinib only. The team at UCL stopped treatment 6 months ago and I guess I have been on watch and wait since then. My bloods are still normal but that won't last forever. I don't know what happens next, did you ask to go back to ibrutinib, or to go on the static trial?
Hi Graham good to know bloods still normal after 6 months. Do they not offer static in US? Here if we go to watch and wait we wait for 2nd line treatment until disease progression, one of the reasons I chose static where you get it sooner. However some choose watch and wait as they can get other treatments that they may prefer there. I am happy on ibrutinib but not opposed to other treatments. I wish you well, may your normal bloods last a ling time.
Thanks Ann. Long may your solution last. I'm in UK actually, just finished flair trial. I was wondering how you got to go onto the static trial, which hopefully is next for me also.
My haematologist was running static in follow up to flair. I would ask your haematologist if they are doing static. If they are not they may know who is. If not contact Leeds Universtity and Prof. Hellman’s successor or team.
I'm hearing that you want to be able to stop treatment. Is that right?
Is there any particular reason for stopping the Imbruvica? Side effects? Cost?
I'm inclined to agree with annmcgowan and your doctor. Stick with it unless there's a reason to stop. If there's a reason, consider the side effects and their probabilities. Sometimes we get just a list of side effects, and many of them are improbable, but a few are more probable.
Thanks - it’s not so much that I want to stop but that seeing all the news here about people doing V and O and then not needing treatment after that seems desirable .. so I wanted to learn some more about that essentially .. but at the same time I would like to be treatment free if possible
V&O has some potential bumps that BTKi's don't, particularly because of the O.
Another thing to look into might be adding Venetoclax to Ibrutinib as a fixed duration thing. It's not done often as an add-on in firstline. It's more of a thing tried in patients who haven't been treated before. Normally, it's a fixed duration thing in firstline therapy. It's also used in relapsed/refractory patients, where they can continue one or both drugs in case of progressive disease.
What hasn’t been said on this thread and perhaps not by your doctor is that the researchers don’t yet know what is the best treatment protocol for patients. There are game changing treatments available but how they are best administered remains largely an unknown and that is why there are so many clinical trials ongoing. The time, dosage, sequence and combination variables for these drugs is almost endless. Complicating matters greatly is the fact that CLL is a heterogeneous disease. Meaning that how the disease behaves in any given patient is highly variable. Some patients never need treatment while other patients need almost continuous treatments. Some die of CLL and some die with CLL. Against this backdrop I think your doctor has given you excellent advice. Keep with the treatment you are receiving as it is working effectively and allow the doctors/researchers to continue to collect and analyze trial data so that if you are in need of treatment again in the future your doctor will be able to make a more informed decision.
I've been on Imbruvica for almost six years and it works fine with the normal annoying predictable side effects. My wife is in the "If it's not broke, don't fix it" camp. My CLL guy is offering I+V as a fixed duration therapy. Since you are already on the Imbruvica you would simply add in the Venetoclax. It's a newer treatment than V+O but all indications are that it works fine. Right now, I'm just sitting tight. Since the Imbruvica is working fine I'm going to keep my eyes open and see what else is coming down the pike.
Yes, indeed. If you want to do some googling, check out the Captivate and the Glow studies. It would be a lot simpler just adding V to your already existing I.
Your bio does not indicate when you started ibrutinib. Whereas I had a choice of ibrutinib or Bentamustine + Rituxan in 2018, by the time I needed second treatment in 2022, V&O was newly approved as relapse option. V&O may not have been approved yet when you started ibrutinib.
That start date raises the question - why Ibrutinib and not Acalabrutinib? Acalabrutinib is a second generation BTKi approved for CLL/SLL by FDA in November 2019. Acalabrutinib has a lower toxicity / side effects making it better tolerated than Ibrutinib. Acalabrutinib + Obinutuzumab is available in US.
Having been dealing with CLL for almost 20 years, and treatment with just about everything already noted, i've been in and out of CR/uMRD since 2010. A few details/ideas/thoughts that may be helpful in your discussions with your doc:
1) long term use of ibrutinib can lead to resistance. That means it stops working. I was on it for 5.5 years and didn't develop resistance, but it does happen. Ask your doc about his/her views/concerns about resistance
2) I went from Rituximab (along with other chemos) to I and then V. The I+V procotol is in clinical trials but many docs prescribed it initially. Now most in the U.S. recommend acalabrutinib/zanabrutinib and then V. There is some evidence that Z is more effective than the other BTKis. What's his or her view? We all support the "if its not broke, don't fix it" philosophy but Zana data are getting more compelling.
3) the use of Obinituz... to reduce tumor burden so you can start V without TLS is common, but once your tumor load is low after a lot of Ibrutinib you may not need Obin....Some patients (including me) and docs prefer to avoid obini and use a BTKi to get their tumor loads down before starting V. Good topic of discussion with your doc, on the pros and cons of O vs. a BTKi . What do the data suggest?
4) while V may be time limited, that doesn't mean one and done. I got three years of uMRD from 16 months of V after the 5.5 years of I. Ask your doc about he/his expectations of use of V--X years? Y years? And then what? Can you go back to using V, or maybe combine V with something new, like Pirto?
As others have noted, lots of options these days. And there will be more tomorrow.
That’s a lot to take in but very helpful thanks, if you don’t mind I am wondering what are you doing currently for treatment ? And were there periods when you achieved remission you stopped treatment ? I couldn’t quite tell, thanks
You're welcome. I am in W&W for the fourth or fifth time since my CLL diagnosis in 2005. I stopped treatment each time i achieved CR or uMRD. My first hemoc wanted to make sure i didn't overdo it--he was worried that continuing to take V when i was already in uMRD would be looking for trouble. Other hemocs say there should be an limited continued treatment (x months) after achieving uMRD. No definitive data on how long to keep taking the drug after achieving uMRD, though lots of clinical trials looking at this.
My current hemoc says i should restart treatment at some point, but we're not sure when. Depends on blood work--how fast is the CLL rebounding--physical symptoms, etc. Also, not sure what the next treatment protocol will be. I may just go back on V, or maybe take pirto and then V.
meanwhile, i feel fine. Note that my immune system is a mess and i will be starting gamma globulin infusions soon to deal with that. My immunologist and my hemoc will need to coordinate thinking and treatment plans down the road, i suspect.
While my situation may seem complicated with lots of nuances, i'm thrilled--i have options which didn't exist 20 years ago. And thanks to those options, I'm alive.
Ultimately, there are options. For instance, combining venetoclax for a year to get off all drugs.
There is a trial at DFCI where a specific arm allows for prior treatment with ibrutinib.
You combine zanubrutinib with venetoclax then stop treatment until it comes back or becomes a problem again.
There is something to be said for: don‘t break it if it isn‘t broken.
There is also something to be said for getting off treatment and not feeling tethered to medicine you need to worry about if you travel internationally.
Yes, going to a trial takes time and effort but the idea is to get off treatment and get a treatment holiday.
Funny you mention travel, I didn't post that but I am meant to retire soon and part of the plan is to split time between here and Indonesia where my wife is from, and though they have treatment there I haven't looked into cost or anything. So it is a part of why I am asking...did your trial result in you being able to stop taking medicine?
Yes, I have been off treatment since March. Fantastic not to bruise anymore.
I am probably not a good measure of how good the treatment is since I think I have more aggressive disease biology. BMB this morning says I have medium to large cells so I may end up restarting treatment soon.
There are lots of people here who have done very well with BTKi plus BCL2 drugs.
Where in the USA are you? Someone may be able to help you keep an eye on trial options to get a treatment holiday.
Los Angeles - it's just research for me at this point but may very well evolve into something different within the next year or so, I've seen some good resources here and don't doubt there are people here who could help with that
If you mention it to your CLL Specialist maybe they can keep an eye out for you for such trials. Also, if you go to the local CLL Society meetings someone may already be doing this in the LA area.
Just remember adding something like venetoclax will still add another year of treatment or so when figuring out when you want to leave the country.
Interesting... my oncologist at San Antonio's MD Anderson branch asked me at the beginning, "Would you like a one year treatment and done, or take daily meds indefinitely?". I am thinking that the jury is still out on which is the best protocol. As long as they both work, who cares... right?
When was the beginning? Someone here indicated to me that when I started in 2021 that may not have been an option. My oncologist also that V and O came w increased risk as opposed to Ibrutinib
Maybe my tumor load was too heavy when I started compared to you I don't really know. I'm pretty sure my body was riddled with them though to the point where the doc didn't show me because they thought it would have been too traumatic, but that's a guess. I'm not a mistrustful person but it makes me wonder about the oncologist's incentive to keep a patient on Ibrutinib when what you describe is available, but again I have no idea. Anyway thanks for the input it is helpful.
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Any suggestions prior to starting V&O?
V&O treatment 
