My husband has been taking A-brutinib since April 2021 (over a year now). His last blood showed blood levels at “normal” (non-CLL) numbers, and his onc was very pleased - “The drugs are doing their job.” The million dollar question we forgot to ask - can one go off A-brutinib the way it seems some do with Ibrutinib? Has anyone experienced this?
Also - if one stops a BTK inhibitor, and numbers start to change again, can you return to the same drug? Or do you have to try something different?
I stopped Acalabrutinib after 3.5 years only because I could no longer tolerate the side effects. I had an excellent, though not complete remission for 2 years, or so we thought. While my labs are all normal, my relaps aggressively snuck up on me as huge and numerous clusters of lymph nodes, with scattered intermediate sized lymphocytes. (I recently posted 'Richter's or not?) Now with a heavy tumor burden, my road ahead will not be as easy as taking 2 pills a day. BTKIs are meant to be taken "forever". So unless you have a really pressing reason to have to stop, my experience would say - Don't Stop! But that's just me. P.S. I recently heard one of our CLL experts on a panel say that stopping a btk can cause trouble, but I was not sure as to what he was referring. All the best, t.
I read some stories about rapid flare-ups on this site once the brutinibs were stopped. There was one or two about ruptured spleens too. But there was the story of a person if I remember correctly who stopped Ibru like 12 months ago and had his numbers still stable. I don't remember the details though.
I started treatment with Acalabrutinib last August and my blood numbers are more or less back in the normal ranges. I asked my consultant how long I would need to take the drugs. She said that I would need to take Acalabrutinib for as long it was working, I took this to mean, for life. However, if it keeps the CLL at bay then I am quite happy to pop my pills twice a day.
🌞🌷🧜♀️
I am a rare and lucky bird! I started Acalabrutinib in July 2016 in a clinical trial at NIH. I reached UMRD (undetectable minimal residual disease) after 1 year (July 2017) by both bone marrow and peripheral blood with Acalabrutinib. Due to some side effects I went on a drug holiday on Jan 2019 after 2.5 years. I have been off drug for 3 years and was still UMRD by flow as of last July. I will have another flow this July. I am still monitored every 3 months at NIH and all blood work is normal. It is very rare to achieve UMRD from single agent BTKi and in some ways I am an experiment in being able to come off drug. It is not recommended in most cases.
SandiC, hope the good news continues in your upcoming July Flow, you rare bird, you. I am heading up this week to see Pia and the team to make plans for entering the BRUIN trial at Duke to get randomized to either VR or Pirto+VR. I will be forever grateful for your having sent me to Pia to get on the acala trial. She’s a fireball and the team has been superb. Many thanks. Bud
That's always my question too, I took IB for a year and had to get off of it now it's been over two years and they're asking me to try V and O. I am going to try the V but I'm not going to do the O. I would think on the Btk drugs when peoples ranges are in normal I don't see why they are not reducing their dosages, I think no one wants to get off the program everyone else is following but Doesn't seem to be anyone trying this. I feel like everything they're doing is an experiment anyway so why not.
I stopped Acalabrutinib for four days for a procedure and my lymph nodes exploded. I was supposed to be off for 10 days, but I opted to cancel the procedure and resume the medication. Rapid disease progression is a known effect of stopping treatment with this drug.
You'd want a look into your marrow first. Very few reach uMRD on BTKis. They are meant to be taken until they stop working.
You are right that not many reach uMRD on BTKi monotherapy. Only 10% on ibrutinib reached uMRD after 4 years in an early clinical trial.
Depth and durability of response to ibrutinib in CLL: 5-year follow-up of a phase 2 study
pubmed.ncbi.nlm.nih.gov/294...
Depth of response improved with time: at best response, 14 (29.2%) of 48 patients in the TP53 cohort and 9 (27.3%) of 33 in the elderly cohort achieved a complete response. Median minimal residual disease (MRD) in peripheral blood was 3.8 × 10-2 at 4 years, with MRD-negative (<10-4) remissions in 5 (10.2%) patients. (My emphasis)
Has anyone experienced leg swelling?
Anyone experiencing muscle and joint pain on Venetoclax?
