Stopped Ibrutinib - Side Effects Continue

[Roydeane]

Hi Everyone - Sorry about the long post BUT I NEED HELP.

I was on Ibrutinib (IB) for 2 weeks and after two days got severe headaches mostly in back of head. I have hypertension but it is under control with 25mg Atenolol but blood pressure went from 120/80 to 160/90 on average and tightness in chest when walking to fast or exerting myself. Doc increased Blood Pressure meds then doc changed them to Norvasc and increased those and Blood Pressure came down a little. I had my heart checked out with EKG, bloods and ultimately an angiogram a couple days ago at a top heart facility to rule out heart issues. Cardiologists said heart looks great and arteries are all clear.

I have been off the IB for a week now and still suffer from chest pains that radiate when walking more than 200 yards/meters and still have headaches mostly on right back of head and right side. I am seeing my Oncologist tomorrow to go over all of this. I also suffer from reflux but the Nexium has that under control. Now I was only on Ibrutinib for 12 days and have been off one week but side effects persist - severe headaches and chest pain. Feels like pressure/tightness on chest which can go to my back and up into head and can increase with just breathing. Its scary. I need to get to the bottom of this before getting back on IB. ALL of this started after taking the IB.

Does anyone have any knowledge or experience with stopping IB but side effects persist. And I was only on it for 12 days! I want to get back on but I need this all to subside so I can rule out other possible issues with esophogus, lungs, etc. I am 59, little to no CLL symptoms but my prolymphocytyes are proliferating and my docs want me on the IB before symptoms become a problem and perhaps to preven it from becoming PLL or transforming.

I have doctors at Sloan, Columbia and Ohio State in the US who have helped me and all concur. I am CLL/SLL 17p/p53 delete along with other features which have made it rare (by all dr accounts) and was difficult to diagnose correctly. I have a loving supportive wife and good loving people who care which helps greatly.

Any thoughts?

[Hidden]

Hi Roy-Happy to hear u are on top of it all. congrats on the clean heart system. I to have a lot of unanswered afib questions will share next week after visit with cardio oncologist. I hope with a bit more time off from IB your symptoms abate. be well-bill

[Roydeane in reply to Hidden]

Thanks. Seeing doc in a couple hours. Hoping for some good input.

[Hidden in reply to Roydeane]

keep us posted. good luck

[Rmendez3]

Hi Roy. I was on IB for the last 7 months. Side effects were horrible. I had headaches high blood pressure and always tired. I just stopped taking it to give my body a break. Within 3 days I could barely walk due to severe bone pain throughout my lower body. I also had chest and joint pain. It’s taken about two weeks to start to feel better. I’m hopeful that I can stay off for a while. Good Luck!

[Roydeane in reply to Rmendez3]

Thanks so much for your feedback. At least i dont feel so alone. Hope things work out for you. Did they ever try to reduce your dose?

[Rmendez3 in reply to Roydeane]

Hi. Yes I did. I started with 3 pills a day and went down to 1 pill a day. I still got a good results for the 1 pill but I still had deal with the side effects.

[Roydeane in reply to Rmendez3]

So then what are your options? Trials? Whats happening in your mind if i may ask.

[Rmendez3 in reply to Roydeane]

Well, I’m not sure. I can go back onto IB if I want to deal with the side effects, I’ve heard about CAR-T trials where I work ( Stanford Hospital) but I have to look more into that. I’ve had extreme reactions to other therapies like Ritux. So I will have to discuss all this with Dr. when my numbers start to change. I hope this was helpful.

By the way I also felt very alone before I found groups like this. I have a wonderful family around me but talking to people who are also going through this is very comforting. Take care

[MsLockYourPosts Passed Volunteer in reply to Rmendez3]

A friend who is treated at Stanford is now getting Venetoclax. The company provides it to her for free. You might ask if that would be an option for you.

[Jm954 Administrator]

We have had a previous post with replies about side effects when people come off Ibrutinib. You can find it here, hopefully this will help

healthunlocked.com/cllsuppo...

[Roydeane in reply to Jm954]

Thanks for your input and support.

[Hidden in reply to Jm954]

Thank you for that link. I've been on IB for a year and a half and haven't been off it at all, but now I'm wondering what would happen if I needed to stop the drug for surgery, etc. The side effects from stopping do not sound good at all.

[Jm954 Administrator in reply to Hidden]

Anecdotal evidence from this site and other conversations appears to show that if you have been on Ib for some time (like yourself) and have good counts then you can often come off with little or no side effects and then restart again. Side effects such as fever, aches, chills seem to be common place if you've not long started Ib and still have lots of CLL around.

[Hidden in reply to Jm954]

Thanks for reassuring me! I really have had no side effects from this drug except for the bruising and red dots occasionally on my arms and legs. The pain in my hips, joints are from osteopaenia(sp) and I have no idea what to do about that. If there is a treatment for that I've never been told about it.