Wondering if anyone has experience with shifti... - CLL Support

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Wondering if anyone has experience with shifting from Imbruvica to Calquence. I have been on Imbruvica for 5 months with bad side effects.

Mansil profile image
15 Replies

Imbruvica switch to Calquence

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Mansil profile image
Mansil
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AussieNeil profile image
AussieNeilPartnerAdministrator

Read the answers to this recent post: healthunlocked.com/cllsuppo...

Neil

sllincolorado profile image
sllincolorado

Yes. Very happy to have made the switch. I switched after 2 months. Let me know if you have specific questions. Feel free to direct message me if you prefer.

Mansil profile image
Mansil in reply tosllincolorado

Thanks so much. I have been on Imbruvica for 5 months with exhausting fatigue and other issues which seem common with others on Imbruvica. My Onco thinks I will have fewer side affects with Calquence. How long have you been on Calquence and why did you switch? Are you having side affects with Calquence? Did you have much difficulty making the switch? Unless switching relieves/eliminates the fatigue I'm uncertain about changing.

sllincolorado profile image
sllincolorado in reply toMansil

I was on Ibrutinib for 2 months. I had debilitating joint and muscle pain. I could not walk some days. Steroids, other meds, etc did not work and I refused opiates. Doc decided on acalabrutinib and was surprised insurance covered it since this was right before official approval. I’ve been on it for about 18 months. No side effects. No pain. Sometimes I’m tired in the afternoon but nothing major (I work full time from home). No issues switching. My blood numbers are all in normal range.

Side effects are very person specific. Since fatigue was not my issue on Ibrutinib I am not sure if the switch would make a difference. But acalabrutinib is known to have fewer side effects.

Mansil profile image
Mansil in reply tosllincolorado

Thanks so much for taking the time to answer my questions. Haven't decided yet, will discuss with Onco next week. Hope all continues well for you.

Carl123 profile image
Carl123 in reply tosllincolorado

Any side effects?

Chillo profile image
Chillo in reply tosllincolorado

Hi! My husband recently was switched to calquence after allergic reaction to Imbruvica it just arrived tomorrow he will start

Any commends or advice are greatly appreciated it. Take care. Blessings to your way

I just switched after about 5 months also. Unfortunately the muscle and bone pain are about the same for me. That's the reason I switched. I don't know why you are? But good luck

Take care

Virgo10 profile image
Virgo10

I switched and I’m glad I did. I experienced significant flare ups in my arthritic knees and elsewhere. Switched to calquence and no such side effects. I still ended up needing a knee replacement but I do not have the side effects that I had with imbruvica. Except for some skin rashes, it’s been fine.

SethB34 profile image
SethB34

I have a friend in my local CLL support group who changed from Ibrutinib to Calquence a few months back due to afib. He says he is glad he switched, but the afib remains and he is thinking that the ibrutinib was the cause for this ongoing issue. Of course, it could resolve still. He is glad he switched, ostensibly due to a less toxic profile in other areas.

kimiD profile image
kimiD

I switched last July after being on ibrutinib since 2016. I had the typical joint and muscle pain w/ibrutinib, lots of fatigue and generally just felt unwell. The switch was not easy for me, I had severe headaches and some vomitting for the first week. We reduced the dose to 100mg per day and I did much better. I have had trouble getting my muscle strength back after so long on the ibrutinib and still have some weakness. Still have the occassional fatigue, some days worse than others. Overall it has been a much better drug for me.

Good luck to you whatever you decide.

skunkbay53 profile image
skunkbay53

My husband was on Imbruvica for 8 months until he developed AFIB. He was taken off it as it was not really working to bring his counts down. 7 months later he started Calquence...hardly any side effects but severe fatigue. He was started on Rituxan infusions then was told to to to one pill a day of the Calquence. He is feeling way better and his blood counts are now within normal other than his platelets. He gets an occasional mouth sore but not often.

Carl123 profile image
Carl123 in reply toskunkbay53

How old is your husband if I may ask?

skunkbay53 profile image
skunkbay53

68 years

tryandtry profile image
tryandtry

Hi Mansil:

So sorry you've had problems with Imbruvica.

I, too, had serious problems with it. Imbruvica worked fine for about a year, then it caused Afib, which led to mitral valve damage, and then surgery to repair it.

I put up with moderate to rather harsh side-effects with Imb. for that year, mostly bleeding (under the skin), rashes, & diarrhea.

Calquence has been slower-acting, but so far, it has shown only very minor side-effects. Both me, and my hematologist have been very happy with it.

Like many have said, CLL is different for each of us, but Calquence has been great for me so far.

Good luck,

Gary

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