Well after 18 months on Ibrutinib, and having a recent SVT my consultant has taken me off of Ibrutinib. Unfortunately they have low tolerance for heart issues even though I’ve had no other side effects.
He has decided to let me run without treatment until we start to see doubling rate increase, then switch me to Acalabrutinib.
Right now I’m in remission, and I’m waiting for the results of my MRD to see how long I can stay off treatment. There is a couple of trials for intermittent treatment regimes, so I’m kind of in trial without being in the trial…..
Oddly, I feel no different after stopping treatment. I’m very aware of becoming symptomatic and keeping an eye out for swollen nodes etc…
Let’s see where this takes me over the coming months…….
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MovingForward4423
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I’ve been off Brutinibs since Dec and discontinued treatment due to side effects. I’m in surveillance (w&w) again. It’s a bit disconcerting since I don’t know what to expect. CLL doc said “It won’t be years”. I wish I had more information but it seems this is rare. Best of luck to you.
The test was never a consideration. I was so glad to be able to be taken off in December I didn’t question her statement on length of time or what she saw that had her come to that conclusion. Labs aren’t stable so it appears she’s correct. I had CTs and no enlarged lymph nodes seen other than spleen enlarging again. My daughter wants me to move with her so I may not be going to Chicago too much longer and I’ll find a new excellent CLL specialist which I’m looking forward to.
You know I was thinking “do I actually need the MRD result” or should I just crack on and cross the bridge of treatment when I get there. Like you, I’m ok right now and have no treatment. I feel ok…..
I am MRD Neg and waiting on the results of clonoSEQ that was recently done. Dr may take me off of Ibrutinib (on 5yrs) if neg. It will feel strange not to be on the drug and to be in watch and wait. If the result is positive, I guess I'll continue with the drug.
If there are no treatment choices available that will improve the patient outcome or overall survival, then testing for MRD is not medically necessary, it only provides emotional or curiosity information, nothing actionable.
I would disagree. As they move to intermittent treatment , it will be a critical test so measure when someone can safely come off inhibitors and how long they would have until treatment would be restarted before they become symptomatic.
I agree with you, that it seems clearly intuitive that treating until MRD-U is achieved would be better, but the proof seems elusive.
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There are several clinical trials underway that use 12 months of treatment for 1st timers and 24 months of treatment for relapsed refractory, and in both cases they also test and plot data for reaching MRD-U or MRD %, CR (Complete Remission) or PR (Partial Remission). Some trials have also tested two different ongoing arms where some continue treatment past 12 months if they are NOT at MRD-U and another arm where they are not treated after 12 months.
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The researchers are trying to find a way to use MRD-U as a signal to decide when to stop treatment, but unfortunately, I don't think there is a clear indication that it works much better that the fixed duration method,
I was pulled off Imbruvica after being on it for .6 months and developed two types of pneumonia in both lungs at the same time…..a side effect of Imbruvica. I was able to go 3 years on watch and wait and hen put on Calquence and this is my 7 month….I have had many minor side effects but so far managing. It is doing a great job on my WBC. My ANC remains low as do my platelets. This is my third line treatment in 33+ years so I feel very fortunate!
Here is hoping for a very long Watch and Wait for you!!!
I would love to know how you get on. My consultant has given me the option of having a break to see if the joint and muscle pain I have improve. Halving the dose has helped but after a 2 week break for a medical procedure the pain was bad again when I restarted. Things have settled again but if I could stop treatment I would. Anne uk
Good luck. I lasted 2-3 years after having to stop ibrutinib, without any treatment at all. Then my lymphocytes began to rise quickly again and the question was just about timing. I subsequently had six months of chemotherapy, which has worked really well. Now, the preferred second treatment might well be venetoclax in combination with something else like obinotuzimab.
Interesting times ahead - to stop treatment for a while and restart. I was (potentially) at that point with my secondary breast cancer. My drug has held off a relapse for 19 years and there was talk that I might stop. There has even been talk (in America) of being ‘cured’!! We decided that ‘if it ain’t broke…’ so I am still on my 3 weekly treatments - 313 at last count!
Would I make the same decision, if offered, for my CLL? Who knows xxx
After 3+ years on Ibrutinib it was stopped due to afib. Fortunately my CLL was in remission. My hematologist elected to follow me on no treatment with labs every 8 weeks when I have IVIG. That was 2 1/2 years ago. So far so good!Hoping the same for you.
I thought I would give some of my history concerning stopping ibrutinib because of developing heart problems--paroxysmal AFib with tachycardia. I had started ibrutinib in March 2019 after several infusions of rituximab that was supposed to help my AIHA (hemolytic anemia). The rituximab did not help the AIHA as the hemoglobin came down even more (hence needing to start the ibrutinib) but it did help bring down the lymphocytes and cleared them out of my lymph nodes. In December 2019 my AFib and tachycardia had not resolved on its own and my cardiologist wanted to put me on a medication that would not be compatible with the ibrutinib, so my CLL specialist told me it would be okay to stop the ibrutinib to focus on the heart issues. At first I was very nervous about stopping ibrutinib wondering how that would affect the CLL. I was only taking ibrutinib for 9 months.
To cut a long story short, I am still on "watch and wait" after stopping ibrutinib in December 2019. At this point in 2022 my lymphocyte numbers are going up and my Hgb has slowly been going down but are still not at a point where I need to begin treatment of some kind. My ANC is within normal range as is the Hgb.
In January 2020, shortly after stopping ibrutinib, my WBC numbers were 7.1 and HgB was 14.2 (normal range) In October 2020 WBC was 10.6 and HgB was 13.6. In December 2021 (two years after stopping ibrutinib) my WBC was 52.2 and HgB 12.8. My last blood work in June 2022 showed my WBC at 83.7 and HgB at 12.4. My lymph nodes have started increasing but are not currently bothersome. I know I will eventually need to be on treatment, but the current WBC is still lower than the 220,000 that it was when I began treatment in 2019. My local oncologist has stated that I can continue to delay treatment. I see my CLL specialist at the end of July and will see what he says.
Being on watch wait after ibrutinib has given me several benefits. I was able to have a heart ablation in May 2021 which seems to have corrected the AFib issues. I was also able to mount a high level of Covid antibodies (>25,000) from the Pfizer vaccines and two booster shots. Last booster shot was April 6th 2022 and current antibody level in June is still >25,000. So far I have been fortunate not to contract Covid as I limit my activities and travel etc., and mask whenever I go inside a building, but hope IF I do contract Covid my antibodies will help me have a mild case.
I do have regular blood work monthly to monitor things and also to set my mind at rest that there has not been any major changes. I have unmated CLL.
Although everyone's CLL might be different I hope my experience will help ease concerns of anyone who is told to "take a break" from treatment.
CLL diagnosed 2006 at age 72 due to CBC numbers and the bone biopsy. No treatment necessary until 2018 at age 84 when hematologist noticed my enlarged spleen overlooked (!) on echogram by the primary physician. Since then on Imbruvica 420 without any problems (after initial three month rash on face ). Now 88 with normal CBC and CMP continue Imbruvica 420 - although the monthly CBC has been in "remission" range during the past 5 month'. I keep a diet of several small "healthy" intakes daily since a half a century with no meat, no sodas, no sugar, no alcohol and I exercise moderately daily by walking on my indoor treadmill - and climbing 110 steps to the 16th floor twice daily : 220 . The diet and exercise has and is also keeping my A1c at 5.5 below diabetes level. - My second daily climb to the 16th floor is at 11 PM while the building's other elderly residents are in their apartments and the heirloom standing clock in the empty lobby tolls like "the house on the hill....at midnight... ". And then I start my lonely climb up the bare staircases. It doubles as meditation and I go into trace but slowly step carefully and hold on to the railing with one hand. I notice how my scelleton adjusts itself like if at a chiropractors' and my breathing deepens. I feel stronger after each floor and probably could go on after reaching the top floor, my 16th. Every sound, such as a sneeze is amplified in the staircases like in an opera auditorium. If this is not spooky enough - yesterday I heared a loud ghastly screaching up above somewhere in the staircases . When I reached the top at the 16th floor - the screaming screach came from above on the roof. I can only guess that a nocturnal raptor had grabbed one of the ravens that use the roof as their base.
From reading all these replies, I cannot help to think about covid vaccines. Thinking, would get a much better vaccine response being off of BTK inhibitors. Hard to not feel sorry for yourself, when you are basically on a miracle drug but, you cannot initiate a covid vaccine response. I think about CLL every day, but I probably think more about not getting covid than thinking about my CLL status. It’s a strange feeling.
Just an update on vaccines. They found I did have antibodies after all. So after catching Covid, and having both antivirals, and antibody treatment. I did manage to create long term antibodies against covid. This was when I was on Ibrutinib apart from stopping for 5 days when I took Paxlovid.
I've been off for 3 years. I felt like I finally got my life back. My numbers are slowly starting to rise again, but I consider myself on vacation until I have to start treatment again.
I was really interested in your experience of intermittent treatment. I spoke to a haematologist on Tuesday. Unfortunately it wasnt my usual consultant and he rang the house phone. For some reason he sounded quiet and it was difficult to discuss altering the regime.If I come off the ibrutinib for more than 6 weeks I lose the funding. I have had amazing results and quickly had remission. That was 37 months ago and for 7 months have had a lower dose of 280mg. No change in blood numbers.
I am lowering the dose again to 140 mg. The new tablets will start tonight and I really hope I am doing the right thing. I have muscle and joint pain which improved when the dose was lowered and when I stopped for procedures.
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