Calquence break for Surgery

[lindalou5]

wondering if anyone on BTKi's, especially the newer Calquence tab, has had stomach problems while taking time off of it for surgery. I had horrible side effects from it for three months while at the start of it..and then it stopped and all was OK with stomach. Now two days coming off, my spleen is painful and a bit larger and a couple of other nodes are swelling, my stomach has been a mess. Certainly not as bad as the start of treatment but not liking this problem when going in for major surgery.

[AnneHill]

I think I would tell the consultant. I have had joint and muscle pain return after a break. At least if they know it will help.

I hope things go well, Anne uk

[Jm954 Administrator]

definitely something to discuss with your doctor

[DoriZett]

Early on in my 5 years with Acalabrutinib/Calquence, I could feel my nodes swell and become painful within 3-5 days if I stopped taking it for any kind of procedure. As I got deeper into my treatment, I could go off for a few days without getting that response. The reverse was also true - once back on it - it took a few days for the painful nodes to dissipate - and then all was well - no lasting impact. I'm off treatment now for 24 months and still in remission.

[lindalou5 in reply to DoriZett]

I have been on it for about four years and it sure has worked slow for me. After my surgery-tomorrow-I will contact my secondary progessionals and see if it would be a better idea to just switch to Venetoclax. But hearing your story, I might just stick it out for another year and see what happens I just do not like it that it responds so fast in that negative way when coming off it. Thanks for your insight on this

[Sushibruno in reply to DoriZett]

Hi DoriZett, are you off treatment from calquence? My understanding is that we have to be on calquence until it stops working. I mean I would love to be off it myself but that’s what we all know about this medication.

[DoriZett in reply to Sushibruno]

Mostly for BTK inhibitor monotherapy (not in combination with another class of drug like Gazyva or Venetoclax) we do stay on them until they stop working. In my case, I needed a PPI (proton pump inhibitor for acid reflux). That is contraindicated with Acalabrutinib but my team thought we could manage the reflux with "lesser meds", so I was permitted to start the Acalabrutinib clinical trial in 2015. Around the 5 year mark on treatment, I ended up with 2 bleeding ulcers. It was obvious then, that I needed the prescription PPI's for acid reflux. Since I was in CLL/SLL remission, and I could not take the Acalabrutinib CAPSULES (as outlined in the clinical trial I was in) WITH a PPI (prescription Prilosec) - my Onc opted to put me back in Watch & Wait. Just as all this was happening, AstraZeneca came out with Acalabrutinib TABLETS which CAN BE TAKEN with a PPI. Too late for me and my clinical trial! But I am 24 months in remission in W&W and holding. If and when I do need treatment again, I believe I still have the option to go back on Acalabrutinib TABLETS with my PPI (Prilosec). Acalabrutinib worked well for me so why mess with success - unless by that time Zanubrutinib or Pirtobrutinib are so outpacing Acalabrutinib, I have to consider changing. It's great to be in a position of so many treatment choices. Combination treatments with Acalabrutinib are being tested in clinical trials now to determine if finite treatment periods are as effective as long term treatment with BTK inhibitors alone. All the best to you.

[Sushibruno in reply to DoriZett]

thanks for explaining this to me🙂. Good luck to you.