Due for a colonoscopy after 5 years. Currently on acalabrutinib for past 16 nmonths withgood response ALC down from 56 to 2.31 after poor response from BR in 2019. My Surgeon says to stop Acala for 2 weeks prior.This does not seem right ?.
I have not asked my Oncologist yet.
What have other members been told ?
Thank for a reply
Joffre1
I am on Zanubrutinib 11 months now & it was a rough start. I was in the Emergency Room 3 times in 3 months with Chest Pain until I consulted with a higher authority🙌🏾 After the 3 months of a lingering infection I got antibiotics. I did great for the next 3 months on only 80mg daily of Zanubritinib while my heart & lungs healed. My numbers were normalizing but much slower.
So by Oct 28th I was cleared to increase my dose & I went to 80mg twice daily now. My plts dropped from 90->60, WBC dropped from 30’s to Teens, Hgb 11’s, bone pain doubled up & I had Pleurisy Symptoms that were ignored in the beginning of treatment. This time though, I called everybody relevant to my care, 2 Oncologist, Primary & ENT because I was not going back through that nightmare again!!! This time I got antibiotics quickly & was better in no time.
Anywho I had a Endoscopy/Colonoscopy study done together Dec 5th. And I was with my CLL Specialist giving her all the updates. Plts bounced up 103 & she was happy & impressed. She was extra nice because I was furious about her trying to push IVIG down my throat in Nov with the URI right after increasing the dose because it seem expected to me. My side effects are all the listed ones, actually textbook🤷🏽♀️
Okay so I held my Zanubrutinib on Sunday for a Wednesday procedure, expecting to hold it for 1 week. However after my procedure where they biopsied 4 areas in my stomach & also 4 areas in my colon. I got home & started getting ‘Rigor Symptoms’. I felt a strong rhythmic shooting of blood through my legs. Very powerful & scary. I had it before when I stopped the meds in July after my 3rd Emergency Room Visit.
Once I identified what was going on I took 1 Zanubrutinib 80mg pill & sent a message to the doctor. She didn’t clearly understand what I sent so she called me to explain. When I did she said its okay to just take 1 until Saturday & resume my regular dose by then. I know my boundaries because of the PTSD from the first 3 months before I had a CLL Specialist.
I may need a hip replacement from a Job Ending Workers Compensation Case in 2011 and I am scared to stop this medication at all especially since reaching a sweet spot of 1/2 dose. I must get these 30lbs off & Orthopedics will help me decide. Right now its Physical Rehab in Full Effect💪🏾 Good Luck 🙌🏾 Pray On It 🙏🏾
But 2 weeks is too damn long for a simple procedure, my 2cents… 1 week at most🤔
Hi, think I stopped maybe five days before and two after. I think check with your oncologist. The doctor doing my colonoscopy did check with my oncologist. Good luck
Hi vvalkingtall62.Thanks for the response. My time on Alcalabrutinib has been ok. Only 16 months but has me in remission according to Doc ?
I had to come off my BTK inhibitor three days before and three days after a recent colonoscopy.
Best to check with your CLL specialist as there can be some variation.
CLLerinOz
Hi Cller in OzThanks for the response. That is what i am thinking.
Hi Cller in Oz
Due for procedure in 3 weeks now. have hit a speed bump, the specialist doing the job wants me off Calquence for 2 weeks prior and 1 week after. My Oncologist 1 week prior and 1 week after.
Who do I follow ?
any suggestions ?
Hi Joffre,
A while back, I thought I may have needed a cortisone injection in my knee and my specialist didn’t think I’d need to stop my BTKi. I said I’d need to check with my haematology team, particularly as I was on a trial, and my haematologist then told me to stop my med for a week either side of the procedure.
In the end, I didn’t need the injection but I offer that story to show that the recommendation about how long treatment should be paused can be procedure and circumstance specific, while also taking into account an individual person’s particular risk of bleeding.
As you have a little time on your side, can you possibly get your two specialists ‘talking’ to each other?
You don't say which advice you received first but, if this was happening to me, I’d probably get in touch with my haematologist to explain the situation and seek their help deciding what to do.
Good luck with it all. Let’s know how you get on.
CLLerinOz
was told to stop before and after even tooth extractions can do no harm doing so
My wife was told stopping Venetoclax a week prior to surgery would have been a good idea. However her surgery was emergency and so stopping Venetoclax did not happen until just 12 hours before surgery.
I would ask your oncologist for his recommendation first. I had to stop Acalabrutinib for 7 days for a surgery. Stay well!
thanks Katie.
Oncologist probably knows best. Colonoscopy doctor is being cautious. Good luck with this. Hope everything works out! 👩🦳
2+ years on Ibrutinib and a question
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