My husband has been on ibrutinib for 9 years as his first and only treatment. He takes 140 mg per day (plus diltiazem which makes the ibrutinib degrade more slowly so it might have the action of higher dosage.) Blood numbers are all normal and have been for years and years.
He will be having bilateral open hernia surgery and will be off ibrutinib for one week before and one week after surgery.
Is it likely the CLL will flair up again? If it does, does this mean ibrutinib will no longer work?
You will probably get more replies if "only this community" can see it/respomd, versus "anyone". "Anyone" is the entire internet, as opposed to being locked/restricted to this Forum.
IMO there's no way to know if it will flare up or not. A few people have reported that pausing for a surgical procedure and testing afterwards, showed they were stable and did not need to go back on. Others did. Some reported symptoms within days of pausing, others didn't. But one does have to stop it for surgery.
Hi Ibru,
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I see you have been with us for over 2 years, and by now you probably have concluded that there are no absolute predictions that work for all CLL patients.
However, we usually only hear about tumor flares or other sudden reappearance of B-symptoms from patients in the first year or 2 of Ibrutinib dosing. If your husband notices any changes during his 2 week holiday, it would be unusual, but CLL is heterogeneous and YMMV (Your mileage may vary).
Several patients that went beyond 5-7 years on Ibrutinib reached MRD-U and were able to pause or stop treatment for multiple years. If he has had an MRD test, that might be the best predictor of his results (of lack of reactions).
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Len
Firstly, congratulations to your husband on 9 years of Ibrutinib, that is just brilliant and what we all hope for.
I thought I was in a confirmed complete remission after 6 years of Ibrutinib but it seems I had developed some BTK mutations and as soon as I stopped it it flared immediately. Within 3 days I had lymph nodes under my arms of 5-7cm.
I think it's unlikely that his CLL will flare but as others have said, every is different. If it does, you will soon know and it will be important to speak to your haematologist asap.
I hope everything goes well and without incident.
Jackie
I have been on Imbruvica for almost 8 years. In that time I have had to have numerous back, knee and dental surgeries and have to stop taking meds before and after surgeries. Fortunately I have had no reaction to or side effects on getting off or getting back on Imbruvica. I take 280 mg a day without any additional CLL meds. Best to you and your husband.
There were isolated reports of quick flare-up and even spleen rupture after a pause. Therefore close monitoring during the pause is warranted.
I've been on Imbruvica for over 7 years. I, too, have had to stop taking it for various surgeries with no problems - blood levels all stood in the normal range.
I have mantle cell lymphoma not CCL. I’ve needed to go off Imbruvica several times for procedures without ill-effect.
Your mention of diltiazem made me curious so I went online and found this article (below) on a death following a imbruvica/diltiazem combination. It should be noted that patient was taking 560mg of imbruvica while your husband is taking 140mg. The article stated imbruvica should be reduced by 50%-75% if taken with diltiazem so your husband is doing the correct thing. Seems like the poor guy who died was given poor pharmacological advice.
I’m wondering what is the advantage of taking the drug combination instead of a higher dosage of imbruvica. Something I must ask my doctor.
I wish your husband the best with his surgery.
About 25 percent of us on BTK inhibitors will develop a BTK sensitive clone which undergoes explosive growth whenever the drug is withdrawn. The longer you have been on BTK therapy, the higher the likelihood of this happening. It’s definitely something worth watching for.
I am in the exact same situation. Having open hernia surgery in 2 weeks. This is for a reoccurrence of hernia surgery 2 years ago. I stopped Ibrutinib for 1 week before & 1 week after. I had lymph nodes appear on my neck & under my arms in about 2 days, but when I restarted Ibrutinib they all disappeared just as fast. I'm hoping the same will happen again. Good luck with your surgery.
I have been off mine for surgery for a week previously , made no difference to my levels. I did take 2 tablets afterwards for a few days. I only take 140 gm a day. So we have lots of leeway. All the best with the op
I would love to reduce the amount of Imbruvica I take. What was the thinking of your doctor to prescribe 140mg/day? The standard protocol is 560mg. My doctor told me he has some patients taking 280mg and doing well. I’ve been taking 560mg since 2016 without relapse or side effects so I’m kinda afraid to change things, but I worry that the larger dosage might be more likely to bring on drug resistance more quickly. Thoughts?
The FDA approved doses, based on the respective clinical trials for MCL and CLL are 560mg (4x140mg) and 420mg (3x140mg) daily respectively. Ibrutinib is a BTK inhibitor; it inhibits the B cell receptor signalling which, when uninhibited, drives the cancerous B cells to divide. Ibrutinib has a relatively long half life in your blood, which is why you only need to take it once day, compared to the second generation BTKi drugs, which need to be taken twice daily. If you reduce the dose of BTKi drug you are taking, or take it less often, then you run the risk of CLL or MCL cells dividing in your body and not having enough BTKi drug around to keep the newly formed cancer cells inhibited, so they'll divide again. Each cell division, you run the risk of DNA changes which result in a resistant sub-clone. That uninhibited sub-clone will eventually become dominant over time and your remission will end. That's why it's important to maintain a sufficiently high enough blood serum level to prevent this happening, so don't drop your dose until recommended by your specialist. If your tumour burden is low and your MCL or CLL relatively stable (less likely to produce bad DNA copies), then it might be possible to reduce your dose.
Neil
Spot on Neil. Thank you. It’s that last sentence with the implicit warning against reducing dosage that keeps me at 560mg. Who knows what my tumor level is after symptom free 7 years on Imbruvica. I relapsed 4 years post chemo/stem cell transplant, but not systemically — eye orbits only, which may bode well (or may not, who knows?) for my tumor load. Too many unknowns. I’m just going to stick to what has been working. Thanks again.
hi Larry 3 years ago when I started on ibrutinib I got really sore joints. My specialist said it wouldn’t be related but reluctantly agreed I could reduce to two with weekly blood tests. All went well but still abit of achy joints. Even more reluctant ly he agreed I could trial one…3 years later all my bloods in normal range one one . I have another friend also on one.
It would be great if this worked for you too especially if you are self funding like me. All the best and please keep me posted
I believe you will find the price might be the same regardless of dosage. Not positive. Might depend also on what country you live in.
Glad to hear you caught a break and were able to reduce the dosage without ill effect. Curiously, joint pain is not listed as a common side effect, but according to a study I read 36% of subjects were so affected. And this online bulletin board is anecdotal evidence it is more common than thought. healthunlocked.com/cllsuppo...
Back to the dosage issue, if I had to guess, if you didn’t get joint pains you would not have reduced the dosage. That’s plenty of motivation. And plenty to gain by it. I don’t have that motivation nor is there anything I see to gain from it which is why I’m reluctant to tempt fate.
Do you have insurance and just self-funding the co-pay? Can I ask what you paid for 560 mg. and what it is costing for 140mg.? (Or are you still buying the 560 which is now lasting 4x longer?) You might want to contact the PAN Foundation for a grant. Also Johnson and Johnson Patient Assistance. There are income caps for eligibility though.
Thanks for your input.
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