13q Muted. Under direction of my oncologist, stopped zanubrutinib July 2022 when I caught Covid. I had been on zanbrutinib for four months, and ibrutinib prior to that for 20 months.
My labs have remained normal and no visible lymph nodes. I have heard from experts in the field, saying ok to stay off treatment until symptoms return.
Wondering if anyone has been off BTK treatment for a significant period of time, and how did you tolerate it?
Hi from a full time lurker on the site these days. I was taken off my BTK Ibrutinb in February this year - been on it since 2016. In fact all my meds were withdrawn while ''they' checked the extent of my intermittent A/Fib and a few other non-life threatening issues. I've had no withdrawal symptoms from stopping BTKs , and my normally 'slightly abnormal' blood counts have stayed the same. I have never had palpable lymph nodes. I was also advised not to resume Ibrutinib unless/until symptoms appear. It's not nearly as long as your BTK drug holiday I realise but so far so good, thought GP and I are toying with starting a small Ibrutinib dose to maybe kick the always slightly raised ALC down into more normal figures - we will see. I'll be seeing the Haematologist in July so will get his opinion. I have 6 months worth of Ibru boxes stacked in a cupboard, which makes me feel obscurely guilty. 😒
If you had cardiac symptoms maybe the Acalabrutinib Or Zanubrutinib would be better for you. Especially with Zanubrutinib listed as the best to reduce or modify dosages. #GODSPEED🙏🏾
While you are technically correct about more recently approved BTKi drugs being less cardiotoxic, remember that other countries are (much) slower at approving them than the USA 
I was on ibrutinib for 9 years, and with the change to a new CLL/SLL specialist, the decision was made for me to have a drug holiday. My disease presented as SLL & my enlarged lymph nodes were internal but my specialist thinks I will have 30 - 36 month holiday since I am MRD at the 10,000 test level. I've had no problems related to the drug holiday, and my nails are much stronger. I'm hoping my hair will lose it's curl & thinness. I still have some fatigue but no heart irregularities.
Wishing you the best.
Lynn B.
I was on Ibrutinib from March 2019 to December 2019 but came off it at the suggestion of my CLL specialist at Moffitt because I developed episodes of AFib with tachycardia. I was off it for over three years and enjoyed the treatment vacation. I stated Zanubrutib in March of this year because my WBC had increased significantly and my HgB had decreased into low level. My main concern was the increased lymph nodes which had become somewhat painful. You can read more details on my profile.
The concerning issue for me was "no apparent / palpable" nodes. My stable, normal blood "remission" lasted over 2 years off Calquence. I was feeling good, but massive nodes began lurking deep in my pelvis & abdomen, we don't know for how long since they showed up incidentally on unrelated imaging. My CLL returned as SLL much to our surprise.
I was on Ibrutinib, Acalabrutinib and then Zanubrutinib for a total of 1.5 years. I’ve been off all tx for 1.5 years as well due to side effects. 2022 was great as was this winter but I’m tiring again and sleeping more and walking is getting tougher as is 9 hour workdays. See the CLL doc in July.
Hi Davidcara. This subject of Ibrutinib and associated side effects has been of interest to me throughout my treatment, now in my 10th year on Ibrutinib and my 11th year of IVIG infusions.
Having previously failed both FCR and BR chemo, which then led to numerous periods in hospital with Pneumonia and sepsis. I then underwent radio therapy for an enlarged spleen which had reached around 30cm and I was then informed that the hoped for outcome had not been achieved.
I was then given approval for the Ibrutinib trial but asked for it to be stopped after just a few months as I believed it was making my existing symptoms of my Behcets syndrome worse. It should be noted that there were no listed side effects when I was in the trial.
However, I was given a rest from the treatment for a couple of months or so and was monitored weekly but this did not improve things.
I then went on a reduced dose of 140mg gradually increasing the dose and then finally reducing the dose to 280mg.
Since then of course more and more side effects are being attributed to the Ibrutinib which I can identify with, crippling joint and muscle pain, erratic BP and Afib, just a few of many.
I have requested a trial rest from the treatment but was advised by my clinicians that I may lose my future funding of the treatment.
I am now awaiting a decision to trial a reduced dose once again but the problem for me is my clinicians are reluctant to make any changes as the treatment itself has been successful in treating my CLL.
I hope my experience is of value to you.
My best wishes
Aerobobcat
thank you for the reply Aerobobcat. Wondering if you tried other medications such as Acalabrutinib or zanubrutinib? I was ok on ibrutinib but my health care organization changed me to zanubrutinib because of less toxicities. I actually felt zanubrutinib was more tolerable than ibrutinib.
I also had COVID and and stopped Acalabrutinib for 3 months. At this time I took big amounts of cortisone which my doctor said is substituting Acalabrutinib. My lymph nodes grew a bit but not substantially. I’m now back to Acalabrutinib
Hi again, many thanks for your response. The question of the alternative treatments you mention has been raised, however my clinicians are of the view that they too have similar side effects.
For me it’s simply a case of wanting a rest from the treatment after 10 years with increasing side effects which the docs still believe are associated with my Behcets which is also a immune system illness, seems I can’t win.
I guess it’s just a case of battling away in the hope of getting some positive response and that is something we all face.
I wish you well in your future treatment.
Wow that is interesting because I kept hearing that stopping or taking less than recommended dosages can lead to resistance & was highly frowned upon. After my 13day ordeal with Zanubrutinib I felt qualified to determine what works best for me. Acalabrutinib 1/2 dose seems to be doing the trick with tolerable side effects. Also the way the wack Onc protrayed it was just like an aspirin, but I am hearing about washing your hands if you touch it, sexually barriers with your partners & keeping your family safe from it. If taking a break doesn’t make things worst than GODBLESS & ENJOY your Break🙏🏾🙏🏾🙏🏾
wow! I thought I was reading my own post from last year !! I had Covid in August. Had been in Zanubrutinib for 6 weeks. Had to stop to take Paxlovid and never went back on Zanubrutinib. My numbers were great! Then in February/March I got diagnosed with lupus. Steroids upped my WBC. Suddenly nodes started getting worse. Went off steroids as I didn't need them anymore (prescribed for severe hives-diagnosed with sudden food allergies) but wbc continued to double so back on Zanubrutinib. I'm only taking one pill twice a day. It's all I can handle being on two heavy duty lupus pills as well. But I was doing fine until the lupus issue. How are your labs? If they are still good looks like you're doing ok. But watch for that wbc count increase!! Now when I have labs I have no clue what is CLL related or lupus related !! I do note issues with my rbc tho. Having labs today for virtual with doc on Friday. I guess I will see....
interesting Labs are pretty perfect. Except immunoglobulins continue to be low, as well as low cd 4 and cd 8. So I still have CLL and am naturally immune suppressed. Interesting after no COVID response from 7 vaccines while on treatment,, I did make 10,000 antibodies from 8th vaccine which was given off treatment.
and funny because I believe the vaccines and boosters are destroying our immune systems!! I came down with lupus. Suddenly I'm hearing of all these people with lupus!! Nope. I had my two vaccines. And wore a mask for two years!! And hardly ever went out. I recently went to CA - 2 huge airports. Crowds everywhere. A huge party with over a thousand people - maskless. I threw caution to the wind and said I can't do this with a mask. And I DID IT!! And no Covid. What a huge relief!!!
I was on Calquence for 6 months taken off because I went into remission and had side effects. I still have the hives for 4 months. I am back in Wait and Watch and feel great except for fatigue.
Calquence attacked my skin, for some reason .
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