Imbruvica

[Lem1]

Hello,

I have CLL stage 1, and because of lymph node enlargement have been on Imbruvica for 3 1/2 years. Doing well with reduction in lymph nodes and energy level back to base line. I am eating healthy and exercising.

My question: I have seen recent articles where combination of some of the medications help limit any future side effects or that Calquence gives less symptom relief and has better outcomes as a newer medication. I am not experiencing any side effects except for bruising and finger nails are very brittle. I have asked my hematologist, and he states since I am doing so well on Imbruvica, they will not recommend switching to one of the newer medications or combinations. I fear that this medication has more likelihood of increased side effects down the road. Any suggestions or experiences would be appreciated. Thank you!

[annmcgowan]

Hi I have been on ibrutinib for 6 years with limited side effects. My experience has been that side effects reduce the longer you are in ibrutinib. Either that or you learn to tolerate them more easily.

Ann

[AussieNeil Administrator]

Hi Lem,

I've attached a plot of the common side effects of ibrutinib, showing how they improve over time, with the exception of hypertension. The newer FDA approved covalent bonding BTK versions, acalabrutinib and zanubrutinib, do have less side effects, with importantly, the risk of developing atrial flutter about half that of ibrutinib. Your haematologist's recommendation makes sense, because different people vary in their tolerance of the different BTKi drugs. You may not tolerate either of the alternatives as well as you do ibrutinib.

Brittle fingernails is a common concern with ibrutinib and some find that a high dose of biotin helps, but you need to go off it for several days (a week to be safe), prior to having some blood tests, typically those measuring hormone levels.

Neil

Ibrutinib side effects reduce over time with the exception of hypertension

[Lem1 in reply to AussieNeil]

Thank you! This is reassuring!

[jcb98311]

I was on Imbruvica for a bit over 3 years. Every morning I check my pulse and heart rhythm with an oximeter with a pleth display. For the first year or so everything was normal, then I started seeing an arrhythmic pulse (afib, but not fast - only just over 90 and up and down) episode at the beginning of the day lasting for less than a day. I had no other indication of the problem and without the oximeter display, would not have known. It started happening every 3-4 months, then every two, then every month, then every week, and finally became a permanent afib after ~3.3 years, confirmed by an EKG at my oncologist office.

She then took me off Imbruvica and after sinus rhythm returned (~2 weeks), started me on Acalabrutinib, just about a year ago now. So far, no afib episodes whatsoever. Also, no brittle fingernails or loose bowel movements. Still have easy bruising and bleeding and some fatigue. But my blood work is staying in the normal range, as it was with Imbruvica as well.

[Ibru]

My husband has been on ibrutinib almost 10 years and side effects are fairly minimal. His oncologist says the same as yours.

[210savannah]

i have 17P deletion and had enlarged lymph nodes including a “conglomeration” of lymph nodes in the abdomen. Started Ibrutinib 5 years ago. I have done great - brittle nails, arthralgia, and bruising being my main side effects. When I asked my oncologist about changing to a newer medication he said since I was doing so well he would not recommend changing. If and when I become resistant to the drug then we will look at something new but he saw no reason to change with my bloodwork being as good as it is and my side effects being minimal.

[Lem1]

Thank you everyone! These comments are very reassuring and helpful.