Hi everyone and happy new year!
I thought I should post an update as I am now half way through my infusions of retuxinab on the flair trial programme. I take three ibutinib tabs every day and have a retuxinab infusion every four weeks. Six infusions in total.
Everything was going well with very mild side effects and both wbc and platelet count heading in the right direction. Only just short of being within range so was very happy. That was until 10 days ago when I started to have severe leg pains. Started in my knees but now spread up and down into what I can best describe as being like growing pains (I'm 6 ft 7 so growing pains are something I suffered with in my teens). For anyone who didn't have growing pains then it is hard to describe but it is a constant and agonising pain that feels like someone is physically stretching your bones. The childhood version just occurred at night but this is 24/7. I am taking as much pain relief as I am aloud but it just isn't helping and frankly it is now at the point where it is getting me down.
I would be interested to hear if anyone else has experienced anything similar as there could be a chance that it is not related to my treatment. Hopefully I have not started growing again as 6ft 7 is tall enough!