Coming Off Calquence (

[susq9948]

I was put on Calquence (acalabrutinibam) 2 years ago due to Hemolytic Anemia. We tried prednisone for 3 years but every time they took me off my hemoglobin would drop and eventually it was determined I needed treatment. As of now my numbers are looking really good and I'm considering going off of it. I feel like it's keeping me fatigued and impacting my memory. My doctor isn't crazy about the idea but says if I do come off of it, he wants to check my blood every 4 weeks. My question is has anyone come off of it with success if the issue was hemolytic anemia? In addition, while on it, do you feel like your memory has gotten worse and do you feel more fatigued than usual? Any input would be greatly appreciated. Thanks, Deb

[LeoPa]

Interesting question. Not my experience but from what I read on this forum, Calquence is to be taken for life or until it stops working and is usually not stopped after 2 years.

[Nucleusman]

been that way and steroids didn’t help I suffer from fatigue as well but as iron levels are down going to give me an infusion to see if it helps after 2pm just fall asleep

[craterlake in reply to Nucleusman]

the iron infusions really helped me ...it was my personal physician who recommended them .. my oncologist later commented after looking at my labs .. i guess you needed the iron infusions . ah .. yep !!! hope you improve as much as i did .. blessings , james

[tom3659]

mememory And fatigue are the worse, along with diarrhea..

[susq9948]

I take floradix iron and it seems to be helping keep iron levels up.. I know they say it’s a lifetime drug but it’s only been around a few years so not sure how they can gauge that just yet. Which is why I was curious if anyone had come off of it!!

[MisfitK]

Is there a way to reduce the dose vs coming off it "cold turkey"? You don't say what level of dose you are taking...

[susq9948 in reply to MisfitK]

It’s oral dose of 2 a day and I take 1 a day. I asked about going to 1/2 or 1 every other day but Dr Byrd says he’s concerned that will make me immune to it and it won’t work if I have to go back on it!!

[Skyshark]

Current thinking for stopping treatment is uMRD4, no detectable CLL cells in 10,000 cells. Flair trial has yielded excellent results by stopping at twice the time that uMRD4 was reached. eg. uMRD4 at 18 months, stop at 3 years.

Unfortunately only about 10% on Acalabrutinib monotherapy reach uMRD4. You may have been lucky.

Some people that have more flexible treatments available have added Venetoclax to the BTKi drug Ibrutinib with a view to stopping at uMRD4. The addition of Venetoclax for a year increases number reaching uMRD (in blood) to over 70%. As yet this isn't commonly available with Acalabrutinib.

The addition of Obinutuzumab to Acalabrutinib doubled the number reaching uMRD4 to over 20%.

[susq9948 in reply to Skyshark]

Can you help me understand what it is you’re saying and is there anyway to test for that uRMD level?

[Skyshark in reply to susq9948]

MRD (measurable/minimum residual disease) is a blood test, it can be peripheral blood. (from a vein). Your doctor should be able to order this test. It's similar to the NGS (next generation sequencing) test and looks for the markers that are found on CLL B-cells (Lymphs).

[susq9948 in reply to Skyshark]

I spoke to doctor and he said once my lymphocytes are normal, they would potentially do a flow cytometry MRD test to see what it’s doing. So thank you as they hadn’t mentioned that!!!