Need quick advice about going off ibrutinib for two weeks

[ElMaga]

My oncologist has requested I go off ibrutinib (420) for two weeks so he can see how I do and to determine if some side effects are from med. I’ve been on it since late December. Results excellent. Tests in July look nearly normal.

But I’m terrified to go off it ; will I have to relive side effects when i restart in two weeks.? Will my body react to going off of it ? Will I lose ground on my wonderful progress? What could go wrong ?

I’ve tolerated all minor side effects ; have developed issues around balance and upper back pain and doc wants to see if there is a connection to meds. Also he’s determining if dose can be lowered

One concern going off is that I took baby aspirin for stroke prevention (I had a TIA some time ago) and went off aspirin once I started ibrutinib Don’t want to add the aspirin back in for two weeks as I have no clue if it will cause bleeding Yet I don’t want to be vulnerable to stroke

So many questions ; Any advice appreciated

[Seok]

Hi ElMaga

I went off IB early June after taking it for 22 months due to knee pain. All numbers were great except ALC was 16 then. Have been feeling great without knee pain since going off IB.

ALC went down to 11 on July 18, and further decreased to 9 three weeks later. But my Hb, platelets and neutrophils suffered slight decreased. I’m hopeful that the good time will last.

Hope you’re able to find a peaceful solution.

Seok

[ElMaga in reply to Seok]

Thank u

[june65]

I went off it for a month not long after starting Ibrutinib almost 2 years ago with no adverse effects. My husband had to go off his about 6 weeks ago for three weeks as he was having his pacemaker battery changed and then a small op to remove a benign growth from his eye lid. He also suffered no negative effects.

June

[annmcgowan]

I have been off twice for cataract surgeries 3 weeks first time and 2 second with no ill effect.

Ann

[LovecuresCLL]

I seriously doubt being off the med for two weeks is going to be harmful. What are the side effects? You will not “lose ground” that fast. Maybe if you were off it for months but not weeks.

[PlanetaryKim]

Everyone is different. My CLL symptoms return very quickly when I go off ibrutinib - within a matter of days. But then they disappear when I resume. I have had 3 stoppages since I began ibrutinib 2 years ago. Everyone is different. If you are having terrible side effects, it probably is a good idea to do the stoppage your doctor recommends, to determine with accuracy that it is due to the ibrutinib.

There is always the option of reducing your dose to control side effects. You could discuss that with your doctor. And depending on what your side effects are, some patients have switched to acalabrutnib (next generation of ibrutinib with fewer side effects) and found their problems solved that way. Good luck to you

kim