I am desperate to seek out recent experiences of others who deal with tendon issues that might be related to the TKIs. I am really struggling and could use encouragement and advice from my CML sisters and brothers who are dealing with this. I have reached a pretty low point in my journey because of this limitation. I am 4 years into Gleevec 400mg.
Short story - diagnosed in 2011 and was able to resume a wonderful running & cycling routine until I developed a nasty tendon issue in my left ankle which has sidelined my running for the past 18 months with no end in sight. I also had to stop road cycling in September as I've developed what might be a tendon issue in my right knee - I am so frustrated and discouraged and have lost the ability to exercise on my terms. Despite extensive rest, icing, NSAIDS (Advil, Aleve, and now Voltaren Gel), I am not healing. I am 46 yr old and although I realize I am aging, I would still fully expect to heal from these irritations, but it's not happening.
I have seen some of the best knee doctors in the entire southeast USA about my right knee and I've had two MRIs since August of 2014. I've also had an ankle MRI -- all of which have been negative for any joint issues and the surgeons can't find any reason to scope either joint. I had an experienced ortho examine my knee extensively this weekend, and he pressed directly on the medial joint line in my right knee and I felt some discomfort, then it rapidly followed with a significant inflammatory response that filled the joint with fluid and created a 'hot knee' literally within a couple of minutes - something he said he's never seen in his 16+ years in this profession. Totally baffled.
Does anyone deal with this? I really could use some very specific recommendations on what to do next ... specific supplements/dosages, or should I even consider stopping Gleevec for 2 - 3 weeks as an experiment?
This is a pretty big setback in my journey and am desperate for some help. :-(
Thank you for any feedback and advice ...