In Dec. 2000 I was teaching full time, doing a 3 hr hike every Saturday, and generally being quite active and feeling normal. I was having hot flashes, which is exactly what a 53 yr old woman might expect. On 3 occasions I had cold flashes. With no explanation at all, I would get so freezing cold I was literally shaking. My skin would 'hurt' as though I were standing in a freezer, teeth would chatter...and it would pass after a few hours. I told my dr. about the chills and he said it was just a confused body thermometer that didn't know if it should be hot or cold...hormonal and normal. I was to undergo a gynecological procedure and a routine blood test was taken. The gynecologist phoned my school and told me that I had "a blood disorder" and I was to go for blood work on Friday at the hosp. When I got there...big delay...and I was wondering why they didn't just take a few tubes and let me go back to school. They informed me that I would have a bone marrow biopsy done. I had never even heard of that before. I said that I was just FINE. The dr. said in a mournful voice, "Oh no, Mrs. Esders, you are a very sick woman. Well, that was news to me! The biopsy was scary (and painful) as I really didn't know what to expect. I was released after the whole day in hosp. and called shortly thereafter and told to come to the dr's office with a "supportive adult".....grim foreboding sets in.... On Dec. 11, I was informed that I had CML and would be treated at McMaster University Medical Centre in Hamilton, Ont. All I could think that day was, "HOW on EARTH could all these experts be soooo wrong? I am perfectly FINE!" The team at McMaster was a true blessing. I was offered a chance to be on the Gleevec study, and accepted it. I was one of the last people in the world allowed into the study. It closed a day later. Five patients at McMaster qualified. The computer randomized 4 to the traditional treatment of interferon and citarabine (sp?) I was the only one randomized to the study drug. I was quite nauseous at the beginning on 400 mg of Gleevec, but learned to eat a bowl of oatmeal first and take an antinauseant (Bonamine). It no longer bothers me. I always take it after a solid breakfast containing protein. I have been on Gleevec since Jan. 22, 2001. On July 5, 2001, I reached cytological remission, my dose was reduced to 300 mg a day...and life went on. Dr. Walker, having had 2 bone marrow biopsies done on himself, is a master at it, and I learned to chew bubblegum, listen to music on headphones, keep my hands relaxed, and sometimes even whistle through the procedure. I experienced dreadful muscle cramping at the beginning (all over my body) but that seems to have passed. In 2003 I had 2 mild heart attacks. In 2006 I was diagnosed with SLE... Lupus. Lupus has been about 100 times worse to deal with than CML!!! I gave a kidney to my brother in 1979. Sadly the remaining kidney is pretty tired out after all my drugs and oral chemo over 35 yr, and now I am having to pay close attention to my diet and take insulin in order to prolong the life of the kidney. I am still way too active, loving the blessings that life brings. I volunteer a lot, travel a lot, and sing. Who knows what will land on me next? I'll just do my best to step over it and continue... Angie In Canada.
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