Margie
Thu Feb 18, 2010, 09:24 PM
Hello to all:
I am tranfusion dependent - 2 units every two weeks. Also have an extremely high iron overload. 27,000 last July - not measured since as far as I know. Because of severe digestive problems and the dangers associated with Exjade, my oncologist doesn't want to to take it. The clinic where I go (in the Dallas Metroplex) has no experience with Desferal (sp?) and no one there has used it. However, my question is this: I have black knots on my legs that look like blood clots and cause my legs to be sore in those areas. Also there are hard knots deeper in my legs. (Blood clots like the ones that get loose and lodge somewhere in the body has been ruled out.) The oncologist thinks they may be iron deposits. Has anyone out there had this type of thing or know anything about it? I know the usual side effects of iron overload, but this is new. I had thought my low platelet count might have something to do with it. It stays around 3-4, but the doctor thought otherwise. Thanks for any imput.
I am tranfusion dependent - 2 units every two weeks. Also have an extremely high iron overload. 27,000 last July - not measured since as far as I know. Because of severe digestive problems and the dangers associated with Exjade, my oncologist doesn't want to to take it. The clinic where I go (in the Dallas Metroplex) has no experience with Desferal (sp?) and no one there has used it. However, my question is this: I have black knots on my legs that look like blood clots and cause my legs to be sore in those areas. Also there are hard knots deeper in my legs. (Blood clots like the ones that get loose and lodge somewhere in the body has been ruled out.) The oncologist thinks they may be iron deposits. Has anyone out there had this type of thing or know anything about it? I know the usual side effects of iron overload, but this is new. I had thought my low platelet count might have something to do with it. It stays around 3-4, but the doctor thought otherwise. Thanks for any imput.