I am officially off of Ibrutinib

[KevinCLLITP]

A week ago Monday I took a short ambulance ride as we thought I had entered AFIB or was having an actual heart attack, I had pressure/weight on the chest, blood pressure had gone up by about 80 points, I was having trouble breathing and my right side had become numb from my tongue down to my fingers to my toes. After CT scans and blood work, they calmed me down and sent me home. No results. On Thursday I met with my Oncology team and my EKG was diagnosed as having developed a junctional arrhythmia, not quite AFIB, but we weren’t going to screw around and it meant the end of Ibrutinib after 8 months of attempting to take it while having what I considered were multiple, serious side effects. I was approved for Acalabrutinib and my drugs should be here on Friday so we will try again. I draw the line of side effects at anything which affects cardiac issues, my one strong part of my body, so will watch closely when I start Calquence. The only problem is that I have a brand new sleeve of 4 weeks of 420 mg of Ibrutinib which had just arrived from the pharmacy. I wish I could give this to someone who has a high deductible plan and is getting killed to save them some money, but I guess its not ethical or legal, but I’d surely be willing!

[KevinCLLITP]

Oh, my scrip for Acalabrutinib was $13,500 a month and Ibrutinib was $11,800. I wondered if anyone else was checking their prices or if in other countries people encountered lower prices.

[Jonfam in reply to KevinCLLITP]

My daughter is a nurse in Australia. She said that Ibruntnib is just a few dollars. I paid a lot every month for mine. Cost is over $11,000 a month. I pay close to a thousand bucks a month.

[GMa27]

I don't think it's unethical. It's a very expensive drug...paid for by you or insurance and u own it. You can figure out creative way to "donate" it. If you were selling it then it would be.

Hope new drug helps you!! 🙏💕🙏

[Canuck901]

Wow , thanks for your post , Ibruntnib is definitely not for everyone , I hope you have a great response to the Acalabrutnib. After all it should have a lot losss side effects as it’s. A Gen 2 product.

Keep us informed and thanks for sharing your information with us

[cllady01 Former Volunteer]

Kevin, if the sleeve is unopened? might your Dr. take the med. or can it be returned if it came through mail---if through a specialty pharmacy at your clinic/hospital surely they can take it back if it is unopened?

[cyclist123]

Sorry to hear about the frightening episode. I'm glad you are alright now and hope that acalabrutinib works well for you.

[cll2013]

I gave packet to my hematologist/oncologist who would see it went to another Cll patient.

[skunkbay53]

My husband was on Imbruvica for 8 months and also got AFIB. He was taken off the Imbruvica and put on a Beta Blocker and several months later he was put on Calquence. Doing well! His Apple Watch told him he was in AFIB. I would highly recommend getting an Apple Watch if your on any of these blockers

[Canuck901 in reply to skunkbay53]

What dose was he taking of ibruntnib and how old is he ? Did he have any blood pressure issues previous to treatment ?

[skunkbay53]

140mg AM/PM he is 67yrs old and as far as blood pressure he was good till he started the Imvruvica. We noticed it was high at each visit with his Hematologist. No issues with blood pressure with Calquence.

[2016miniman]

Hi..I had almost the same scenario of getting into Afib for the first time ever. This was initially stated by my Apple4 watch! Could have saved my life. 6 hours i the er and the Afib was gone with no real treatment. My Doc felt that Ibrutinib was the cause so he immediately stopped it and sent me home. Three days later I was rushed to the ER with what was diagnosed as a ruptured spleen. Seems when the protection Ibrutinib was providing was valuable. So when it was gone the mutant cells attached my spleen. Was in the hospital for two weeks. Some of which was in Intensive care as for a short time they didn't think I was going to make it. Easily one of the worst hospital stays ever for me!!

Good luck with yourtreatment

[KevinCLLITP]

I have an unopened package that I couldn’t use but I wish I knew how to have someone else benefit from it.