Changing meds: Imbruvica to Calquence - CLL Support

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Changing meds: Imbruvica to Calquence

999990Bruno profile image
10 Replies

I am a 23 year CLL patient. I have been on Imbruvica for 7 years. I now want to move to Calquence. I need to know details, risks, transition period any other helpful info???

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999990Bruno profile image
999990Bruno
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10 Replies
cajunjeff profile image
cajunjeff

Hello Bruno. I do not know that anyone knows the risks of switching from ibrutinib to acalabrutinib (calquence). While there is emerging data comparing the two drugs, I do not think their is much data about moving from one to the other.

I recently switched to calquence from ibrutinb. For me the mechanics of the switch was easy. My cll doctor changed my prescription, and that's all there was to it. Medicare pays for my calquence, although like ibrutinib, the copay is quite substantial.

The new data seems to say both drugs work about the same, but that calquence has less risk of cardiovascular and other side effects. My blood pressure got worse on ibrutinib and improved when I switched.

There is some data that ibrutinib is superior to other btk drugs like calquence because ibrutinib restores some t cell function which helps our immune system where calquence and other btk drugs do not.

Your doctor is in the best position to advise you on whether to switch or not. If you have been on ibrutinib seven years and are not having any bad side effects, that might be a reason not to switch, why rock the boat?

But if you are having high blood pressure, and heart rhythm problems or other side effects from ibrutinib, its worth having a conversation with your doctor.

I was on ibrutinib three years before switching. Hopefully I got some benefit of it restoring t cell function that is lasting. It was the high blood pressure ibrutinib caused me and my concern of long lasting cardiovascular side effects that prompted me to switch.

So far, calquence has been an easy drug for me. My two main side effects with ibrutinib were high blood pressure and diarrhea, both of which improved with calquence. But everyone is different so we cant all expect the same results when changing meds. Good luck, I hope my input was helpful to you.

.

809123 profile image
809123

Can I ask why you are changing. Also do you have any detectable cLL in the blood and marrow?

thompsonellen profile image
thompsonellen

I just got the script to make this move because of high BP and other side effects. I'm making the switch because Dr. Byrd is worried about these issues long term given my age (and I'm 30 years older) and need to be on meds a long time. As cajunjeff said, mechanically it's easy. You just start taking the meds which need to be taken twice a day. They want me to get bloodwork two weeks out to check and see if anything changes. Good luck!

Justasheet1 profile image
Justasheet1 in reply tothompsonellen

Ellen,

It’s always good to see you posting on here. I hope all is good and you aren’t traveling for work too much.

Jeff

Seok profile image
Seok

Hi Bruno

I switched to Acalabrutinib after stopping Ibrutinib for 8 months due to high blood pressure, knee pain, reflux that cause constriction of esophagus (schatzki ring). All those side effects disappeared during drug holiday.

Starting Acalabrutinib was uneventful; mild headache once in the evening. No issue in the mornings as I take or with coffee or tea.

Hope you feel better after the switch too.

bhayes84 profile image
bhayes84

I had a headache for about 6 weeks before it finally went away.

Justasheet1 profile image
Justasheet1

Bruno,

After the data coming out of ASH this year, Zanubrutinib seems to be the best BTK inhibitor so far but it’s not approved just yet for us.

I’m gonna ask my specialist at MDA about it but as cajunjeff said, why rock the boat?

Italianpainter profile image
Italianpainter

Hi Bruno. I was only on Imbruvica (brand name for ibrutinib) for 9 months. Two weeks into treatment I developed red, painful swellings under my skin. Some were pea sized. One was as big as the palm of my hand! It was above my knee and on the inside of my thigh. Made my whole upper thigh swell and turn red. My oncologist did not know what it was. But the specialty pharmacist found that it was an adverse effect that happens to less than 1% of people on it called panniculitis. When my hands broke out in blisters, that was it for me. I had a biopsy done of the blisters and was told that the dermis had separated from the epidermis! Also a rare adverse effect from Ibrutinib. It was the pharmacist who took it upon herself to talk to my oncologist and get him to stop it. I had also gotten another opinion from Dr. Matthew Davids of Dana Farber in Boston and he said get off of it and start Acalabrutinib or Calquence. My onc agreed and the switch was effortless. No side effects. None. Only my hair which had become curly and I loved that, went straight as it grew out. Solved that with a perm. Hopefully you will not experience any problems from switching but if you are not experiencing any side effects on ibrutinib, why switch? Calquence is much more expensive for me but worth the freedom from side effects.

tryandtry profile image
tryandtry

99.....Bruno

Cajunjeff seems to have the best answer to your question, except I can't agree with his "why rock the boat" comment. It IS totally up to you and your doc, but after hearing many Imbruvica stories, and having had my own BAD Imbruvica experience, I think there may be a LOT of reasons to switch - especially since you may need to be on it for a long time.

My story is a long one. It is posted in the archives, but here's a summary:

During my 3 years on Imbruvica, I had to put up with the usual side-effects (rash, diarrhea, split-nails, etc.), but I had a good CLL response. However, at around 3 years, I started having Afib, although I never knew it, or felt it, at the time. Three months later, it was discovered during a routine Cardio visit, but by then it had basically ruined my mitral valve. I had to have it surgically repaired, and I then went on Calquence.

As Jeff & others found, the switch was easy, and the side-effects were almost non-existant. Unfortunately, it quit working for me after 2 years, but this is apparently not a common problem. Afib, however, is a well-documented & listed side-effect, hitting some 16% or so, of it's users. The Afib never really hurt (pained) me, but it was a real "pain-in-the-___", taking up considerable time and money.

Knowing what I know, I'd switch in a heartbeat, but talk it over with your doc, and while you're on the subject, ask him about Venetoclax, too. It now works great for me, and there are apparently some long-term advantages (like MRD, in some cases), and at 23, you're going to be a LONG-timer.

Good luck.

Gary

Alasn profile image
Alasn

Tolerating it well. Seems to be more targeted than its predecessor, thus fewer side effects generally.

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