Meanwhile, low iron, associated with anemia, results in low ferritin levels. When I look at my counts, there are many that I don't look at because I don't really understand what they mean. Levels of iron and ferritin never came into my radar.
Exjade (or deferasirox), the pill I am taking, is a chelating agent for chronic iron overload due to blood transfusions. You take five pills a day dissolved in water or juice and then wait 30 minutes to eat. Getting this expensive drug was quite a production: Calls from Dana-Farber to the drug company and insurance company, and calls from the drug company to me. It arrived at my house in a black canvas shoulder bag with an outside pocket for the water bottle that came with it.
When I took the first dose I approached it like it was a lump of burning coal.
For people who get easily freaked out by a list of complications that always include death in a small number of patients, this one's a doozy. To paraphrase: Some patients developed severe kidney problems, sometimes fatal, with most of the fatalities occurring in patients who were very ill or who have kidney problems or who take medicine that affects kidney function. Some people developed severe liver complications, sometimes fatal...and some patients developed blood disorders, in some cases fatal.
Finally, serious allergic reactions (which include swelling of the throat) have been reported in patients taking Exjade during the first month of treatment. You can also develop a severe rash, hearing and vision disturbances. If reactions are severe, stop taking Exjade and contact your doctor immediately.
Swelling of the throat is my favorite. What if you are alone and your throat swells so much that you can't speak into the phone to call your doctor? What if it's the middle of the night?
Well, a problem almost occurred, but at the last minute I straightened it out.
The pills came in five bottles of 30 pills each, separately wrapped and then wrapped again in bubble wrap. I removed the first bottle and then put the package containing the others in a safe place. I remember feeling satisfied that I put it in the kitchen (as usual), but slightly off the beaten track so it wouldn't fall out on me from the usual jam-packed cabinet.
I didn't start when planned, because I got sick. But this Monday, my problem with my blood counts resolved, I took out the first bottle, which I still had in my sporty bag after bringing it to discuss with Melissa. I took the first five pills and figured I'd take out the rest to have them handy. I looked in all the regular spots and could not find them. I looked again. Nothing. First thought: I AM SCREWED. Quickly followed by: You have lost your mind. What kind of Space Cadet or irresponsible or crazy person calls Dana-Farber and confessesferr, "I lost those pills." I couldn't do it. I kept looking.
Finally I gave up looking and tried something that Meryl taught me: You put a glass upside down on a table or counter and a missing thing makes its location known. (Thanks, Meryl!) It's been frowned on by some in these parts, so I haven't tried it.
But the other day I put a glass upside down on the counter and waited. I stopped thinking so hard. Within a couple of minutes, my mind cleared and I walked straight to a cabinet whose end extends behind the side of another cabinet, making it not easily accessible. You can't put anything frequently used there, so sometimes I throw something back there if I don't need it for a while.
There was the bag of pills. I was saved! I took them out and looked at them as though my lumps of coal had turned into gold. I hadn't felt so good in ages.