Thanks for your story Angie, I find the differences here and how one was feeling when first dx very interesting. Some were sick, some tired, and some felt great! We are all so different even with the same disease. Yes, I had those chills and fever a lot and that is a sign of leukemia. I did a study on leukemia when I first got sick, and found that a lot of the side effects of Gleevec were also symptoms of leukemia. I still get the hot attacks; and my face will get real red! I love reading the stories; keep them coming! Jeanie<3 In a message dated 5/17/2014 6:34:36 P.M. Eastern Daylight Time, [email protected] writes:
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. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]_ (mailto:[email protected]) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout.
