Hi Everyone. I been on Ibrutinib for 2 weeks now. I know I am in good hands with Dr Oconner at Columbia in New York and and also met with Dr Bryd at Ohio State who is there when i need him.
Anyway, At day three on the Ibrut i got a very bad headache in back of head that lasted 5 days and is now just an ongoing subtle pain. My real problem now is pain in my sternum and clavicle (costocondritus was suspected at first), radiating discomfort in my chest to my back like an anxiety attack sensation and now early today got lots of heart flutters. My chest pain now also increases when i walk so then i have to sit. I am at a trade show and am in a hotel with my wife. They suggested i stop the ibrutinib tonight or reduce it. I am traveling at moment and cant go to my hospital Columbia.
Has anyone had experiences like this? It is really upsetting and scary. I hold it together and then just fall apart from sadness and fear. I am 17p/p53 delete, my prolymphocytes are proliferating, was diagnosed in june of 2016. I have felt very scared and alone And though i dont really contribute to the forum, all your words have been so helpful and generous... but i need your help now.
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Roydeane
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I had pre-existing A.fib that got worse on Imbruvica (ibrutinib) ...the atrial flutter was new... I was on blood thinners as well... the flutters did stop, but not the A.fib, I still have it 5 years later...
I think the concern is stroke...
Roy I'm thinking your docs must have a message service for emergencies, I'd call asap.
And trust your gut if you think u need a trip to ER. I know we all hate going to ER but better safe.
Early on I had panic atracks that looked like heart problems but not.
The flutter sounds like Afib from IB very scary. Please see a doc so you can get calm and carry on.
sending light and wellbeing-bill
My Afib is a result if the ibrutinib and is aserious condition that needs attention. Please contact your docs for thier direction.-bill
Stop IB and insist on talking to your hem/onc MD. If worsening pain, go to ER for further assessment. Your pain is not within the " normal" realm of side effects, notwithstanding anxiety. Please let us know how you progress. Everyone cares deeply about everyone else on this site.
We cannot give medical advice here (e.g. starting or stopping medications), only encourage members to seek medical intervention, which in this case is definitely warranted and as you note, on an emergency basis.
I had terrible pain in my sternum 2 weeks after starting IB. My oncologist put me through all the cardiac tests ( echocardiogram, ECG, chest pet-CT) but it was not a heart problem, It was a side effect of IB concerning joints pain. The pain was really hard and he prescribed Targin 10gr - an opiate . Which helped a lot.
The pain would sometimes radiate to my left shoulder and once to my hip. But the main pain was in my sternum and ribs.
Thanks Gidi - And when i walk the pain gradually gets worse and my lungs tickle. Im actually at an Urgent Care clinic getting my vitals checked. It is really a scary pain and so unfamiliar. My blood pressure is also very elevated.... hopefully this will get figured out. Thanks.
Hi Pken - Thanks for checking in. They said that since I was only on IB for 10 days that afib or flutters really do not occur that early on. My blood pressure though was 165/90. I take 25mg of atenol for hypertension and it is normally 120/80. I increased the dose to 100 and no change so i stopped the Ibrutinib. Saw my cardiologist last night and today getting CT of heart for safety because of other symptoms. I have been off the IB for 3 days and my blood pressure is still the same. How long does it take for your blood pressure to get back to normal once off IB if you suffer from this side effect?
I had similar problems with Ibrutinib (I have Waldenstroms - v similar to CLL.) Recently was switched to zanubrutinib because of intolerable side effects of Ibrutinib. I'm doing better now. Te shoulder/clavicle pain has gone but still have persistent upper right back pain, occasionally extending to lower ribs.You're not alone. Depression & anxiety are often part of both the illness and treatments. My own experience is cycles of remission and relapse with differing side effects of different treatments. - nausea with chemo, muscle joint painswith Ibrutinib. Best for me so far is Rituximab, which makes me feel better, helps my associated neuropathy ver noticeably & virtually no side effects. Unfortunately the improvement only lasts about 2 months, which is why we added Ibrutinib; now switched to zanubrutinib. There's no perfect cure...but still here & fighting since 2016.
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