Prolonged medication holiday

[Davidcara]

Reposting, feel previous post was hijacked a bit. Wondering if anyone has been off BTKi treatment for long periods of time?Was on ibrutinib followed by zanubrutinib continuously for 24 months. Muted, 13q, my oncologist took me off of zanubrutinib when I tested positive for covid on July 21, 2022. Have been off ever since, with normal labs and feeling okay. Oncologist suggest staying off treatment until numbers increase or CLL symptoms return. I am actually ok with this; just wondering if any one else has had a similar experience ?

[Davidcara]

no problem, it still is good discussion.

[SofiaDeo in reply to Davidcara]

Looks like you deleted it though, it's gone. I was looking for it, to see my contribution, and apologize for the parts that could have been construed as a hijack.

[Davidcara in reply to SofiaDeo]

hijacked maybe was not the best word. The discussion just got off subject. I was really hoping for some input to my original question, and I thought it would not happen unless I started over? I was a little apprehensive to delete because I did not want to hurt anyone’s feelings. I was unsure how to start over without deleting. Just wanted to see if any had any experience with stopping meditation

[AussieNeil Administrator in reply to Davidcara]

Hi David,

We do have members who are on extended maintenance drug treatment holidays. Many more FLAIR trial participants on ibrutinib arms are joining those ranks right now. I expect that over the coming years, researchers will determine which are the right markers for drug holidays to be recommended.

Even though HU do provide you, as the post's author the right to delete your post, I think it's important to acknowledge excellent, helpful contributions to your post, even if they are off topic. By all means start a new post if replies to your post go off topic, but rather than deleting the earlier post, rename it to reflect the off target content. You could also ask an admin to turn off replies to your earlier post.

Neil

[Davidcara in reply to AussieNeil]

Thanks AussieNeil. Very much appreciate the reply and posting advice. Will keep in mind, in case it ever happens again.

[Davidcara in reply to AussieNeil]

are the ibrutinib arms in the FLAIR trial ibrutinib alone, or ibrutinib with Venetoclax?

[AussieNeil Administrator in reply to Davidcara]

FLAIR evaluated ibrutinib alone, with rituximab and with venetoclax, compared with FCR:

cllsupport.org.uk/first-res...

[JerrysGirl3]

omg yes! I was only in Zanubrutinib for 6 weeks when I got Covid in Aug 2022. Was on Paxlovid for five days and off zanubrutinib. When I started Zanu again I relapsed with bad Covid. Tried starting Zanu again and couldn't do it. I've been off since September. My wbc went from 118,000 to 37,000 to 33,000 to 25,000 in two months with all perfect other labs!!!! Just had labs this week. Wbc now 29,000. Not sure what's happening and if cll is going to act up again, but I've been fine. Very bizarre.

[Davidcara in reply to JerrysGirl3]

interesting, thanks JerrysGirl3

[Zia2]

I’m glad you reposted for your sake and others as I was following your post as well and interested too in replies to your question. I’ve been off Brutinibs (all tx) for a year if you’re interested I’ll let you know what my labs are when I see CLL doc at the end of the month. I’m 13q

[Davidcara in reply to Zia2]

Did you have any special testing before stopping the brutinubs?

[Zia2 in reply to Davidcara]

No. And she told me I could stop on a telehealth call. It had been a very difficult year and a half due to side effects and working full time. I see her every 3 months and she didn’t think I’d be off treatment for “years”. I was just so relieved and happy to get a break. I’m hopeful about the next treatment time. It’s not something I worry about.

[St1968]

Similar to you, I am off Ibrutinib for seven months now and feel good. There were (and still are) two reasons for it:

- I developed Atrial Fibrillation (AF) clearly linked to Ibrutinib - with a cardio version and removal of Ibrutinib AF was stopped and since I have a normal Sinus Again

- WBC was almost normal (in a range where my physician said If you come with this CBC we would put you on watch and wait.

So we did it. I was first skeptic but also got second opinion, who said, he would have done the same. Don't over medicate, if you are feeling ok. was his logic.

Just sharing own experience here.

[Davidcara in reply to St1968]

so no special testing except cbc before stopping ibrutinib?

[St1968 in reply to Davidcara]

we did a status by CT also, to check if lymphnodes are enlarged, or spleen too big. None of this, so we decided to go for it. We will do this again later (not only CBC) to not get bad surprises...

also my hematologist repeated the molecular check on the distribution of cells, and that was also ok... (edited)

[cll2013]

I was off Ibrutinib for 18 months then had to start calquence 15 months ago.

[Bridgewood]

I have been off Ibrutinib since February and my numbers are just recently “going up” so my Hematologist has increased my bloodwork from 3 months to every month. He does say I will be going back on meds and is keeping close watch on my numbers. I have aggressive cll, diagnosed 3 yrs ago. I feel absolutely fine though!😀

[SycamoreN]

Hi David,

After 8 years on Ibrutinib, I came off it at the end of March 2022 due to occasional arrhythmia. I’ve now been off all treatment for nearly 9 months. My blood count has remained unchanged.

I had read on this forum about some people stopping Ibrutinib and still doing well. So I asked my haematologist whether I could take a treatment break. So far so good. ✌🏽 Wishing you continued good health.

[Davidcara in reply to SycamoreN]

thanks Sycamore

[maresba14]

I was on Ibrutinib for 18 months. Stopped. Then, a year later almost started Acalabrutinib. I’ve been on it about 6 months now.

[Dancedunce]

I have been off Ibrutinib since February 2020 d/t many side effects. My BMB results was MRD but I still had a few small enlarged lymph nodes so DrCoutre did not consider me MRD negative. I still have a normal labs and feel good.

[Davidcara in reply to Dancedunce]

thanks for the reply Dancedunce. The information helps me understand my situation. Glad you are doing ok

[tola2222]

I started ibrutinib beginning 2019, and reached remission end of 2021. Continued on 140mg for "insurance" on instructions from specialist. Got Afib in September and stopped Ibrutinib. Afib cleared with Sotalol. Now on watch and wait. Blood readings remain good, and I'm wondering how long it'll last. Understand there's no data available to make a prediction.

[Davidcara in reply to tola2222]

thanks tola, hope it last

[hervec]

Bonjour .

clinicaloptions.com gives this answer.

Can CLL bounce back quickly after stopping each of the BTK inhibitors?

Toby Eyre, MBChB, MD:

The covalent BTK inhibitors are associated with a risk of flare after discontinuation. It should be noted that when CLL is in deep remission, it does not tend to flare up after discontinuing BTK inhibitor therapy. Data from the ECOG 1912 trial—a randomized phase III trial comparing a combination of ibrutinib plus rituximab with fludarabine/cyclophosphamide/rituximab in treatment-naive patients with CLL—demonstrated that ibrutinib can be associated with durable remissions of up to 2 years. It is important, however, to consider what the next step in treatment will be before discontinuing a BTK inhibitor.

Othman Al-Sawaf, MD:

I agree. The data from the ECOG 1912 trial were surprising in that basically they showed that if a patient has a response to BTK inhibitor therapy and then discontinues it due to, for example, toxicity, there can be an extended time—more than a median of 20 months in the study—before symptomatic progression is observed.

[Davidcara in reply to hervec]

I have heard if CLL is under control, BTKi is stopped, CLL comes back, most times BTKi can be restarted with good results. Knowing this might not be the case too.

The study, seems to include more unmuted and high risk patients, and less muted low risk patients?

Not sure what to think?

[AussieNeil Administrator in reply to Davidcara]

It's quite likely that the study included "more (IGHV unmutated) and high risk patients (complex karyotype, 11q del), and less (mutated) low risk patients", because it's these patients that statistically have a higher likelihood of a shorter time to first treatment and shorter remission times. The approximately 1/3 of those diagnosed with CLL who never need treatment are most likely to be low risk ('normal' karyotype or 13q del) and have mutated IGHV

[Zia2 in reply to Davidcara]

My specialist said I can take another BTKi even after trying three. They worked!

[Angus1953]

My husband was on it for 3yr and they took him off about a month because of his blood resultsAfter a month they put him on lower dose.

[Jillinill]

I'm not here often so sorry for the late comment. I'm one success story for switching from ibrutinib to another BTKi acalabrutinib.I was on ibrutinib, hit normal ALC at 4 months, but quit at 25 months due to severe brain fog and tiredness. Only wish I had MRD testing done at the time.

I was in remission for 22 months before ALC began doubling monthly, After 28 months of ibr hold, ALC rose over 100 and neuts plummeted to 0 following monthly UTIs, so I began acal caps. My ALC dropped to normal at 5 months, and neuts recovered. All is going well without side effects at 18 months, but we are switching to zanubrutinib capsules in a few weeks. My WBC, ALC and platelets are well below normal, so hoping zanu will help stop further loss and normalize. FIO, I'm mainly switching away from acal to zanu due to issue with forced switch from caps to tabs.

My hematologist and I also discussed going on hold again, but with an MRD+ over 10%, we decided to continue. I only wish I knew my MRD at end of ibrutinib which allowed 22 months in remission. I'll likely keep on this BTKi track until we run out of new BTKi's.

Wishing you the best for a full speedy recovery from COVID.

[Davidcara in reply to Jillinill]

wow, this gives me hope. I have been off zanubrutinib since July, and feeling ok with good labs so far b