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.