I saw my oncologist yesterday and she confirmed that my blood counts are fine but my liver enzymes are not. This is due mostly to the high amount of iron stored in my liver, thanks to the transfusions I received over the past 4 years. She's putting me on a drug called Exjade, and if I can tolerate it ( i.e., it doesn't wreak too much havoc on my kidneys), I should be able to unload most of the iron within 2 to 8 months. This will not only help my liver, but will hopefully impact my chronic gvh and lower my cholesterol.
The other exciting news is that I'm reducing the prednisone from 30 mg/day to 20. I hope I notice a difference in sleepability. With luck, I'll be weaned in a month or so. Goodbye chipmunk cheeks.
It turns out that my doctor in Boston knew about the high iron levels but decided not to treat me or tell me. At first, this made me angry. My new doctor explained that I couldn't be treated for it back then because they were waiting to see if I survived the transplant and didn't relapse. Those scenarios would've made the iron overload a moot point. That's the silver lining in all this: I'm here, just weighted down with excess iron.
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3 comments:
Our health becomes such a balancing act post transplant. There are still days when my doctor needs to remind me that I'm worried about the wrong thing and that there is a plan and a time line. I have my fingers crossed that the Exjade does the trick and that you get some merciful sleep soon.
They put me on Exjade too. I haven't taken it long enough to see results. But a woman who read about it on my blog when I went on it said she's been on for a while and it helped her a lot.
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