Kellie: I am working on my fifth year (next January), but I am getting into the time when my CML first began to manifest itself with little things such as low grade fevers & my bones began to ache a lot. That was one of the things I distinctly remembering.......the bones in my legs would just hurt all the time & I mentioned it to my husband one night when we went to bed. I also began to lose weight even though I was still eating most anything I wanted. That part I liked because my husband & I had been doing the Atkin's diet and I liked the fact that I didn't have to watch what I was eating and still loss weight. But, in the back of my head, I kept hearing this little warning, "You know something isn't right here", but I didn't listen. Guess I was just too vain, (smile). I also remember getting fatigued towards the time I finally was diagnosed. What sent me to the doctor was after I went around for two to three weeks with this awful sharp, continuous pain in my lower left side. It hurt more when I was active (like going shopping and doing a lot of walking). I finally couldn't take it any longer and went down to the walk-in clinic that my doctor had......he thought it was a severe case of diverticulitis & treated it with two very strong anti-biotics and wanted me to come back the next week. When I did......he decided to send me for a second opinion as he didn't like what he was feeling when he palpitated the side. To make a long story short.....it was my spleen swollen three times it's normal size and my white blood count was right at 200,000. The one doctor called me up after six o'clock on the phone and told me that I would have to go back to my primary doctor because I had something horribly bad wrong with me and he was just a surgeon and couldn't treat me. I was so very upset.......my primary doctor called the next day and told me exactly what I had over the phone and calmed me by saying that "yes, it is a form of leukemia, but it was treatable. He set me up with the first hem/onc doctor who told me that the high white cell count was in stroke range and we had to work on getting it down first.......the initial high doses of Hydroxyuriea he put me on did that within first two weeks......I think I was finally put on Gleevec within the fourth week. My husband was able to get me in at the Sitemen Cancer Center in St. Louis because his office manager had been treated for an acute form of Leukemia about six years prior to me.....so, I saw her doctor and I just loved him as well as their whole lab set up and everything. Even though I've since been transferred over three more times to different doctors....I still love going up there. They make everything so easy for you. My first BMB was done by the first onc. in his office with no drugs except some Percocet before hand. I about died.....it was awful. He couldn't get any marrow (he said it had set up like concrete) but was able to extract a sliver of the bone of which he was so happy over. Plus, their lab lost at least two different blood tests that I had to have re-done. And, the first genetics test showing whether or not I had the Philadelphia Chrom. or not took almost three weeks to come back. We were not impressed.....thus, the reason for changing doctors and centers. I've not been unhappy about that one time. When they did their first BMB.....wow......so much difference. I was given something by I.V. if I wanted (I did) and the nurse guy doing the BMB was over and done with in five minutes.....I barely felt a thing! Everyone there, from nurses to receptionists to doctors go out of their way to make sure you are comfortable and taken care of. My mother.....who goes with me now....( she was a nurse for thirty years from the early fifties through the seventies and worked in several different hospitals) was extremely impressed when she first went up there with me.
Well, that's my story of which I hope I haven't bored any one to death, (smile). I do tend to ramble a bit when I tell it, so sorry about that. I am also sorry that you buddies haven't seen me for a while......I was without a computer for about two weeks. Mine got caught in a lightening storm one evening and that was that. (Yeah, I know.......should have been unplugged). It came through the telephone line and hit the DSL modem......we also lost a few other little minor things as well. Long story short....I now have a brand new seventeen inch Dell and I love it. It's taken me a little bit of catching up, but I'm here now. Keep Looking Up, Suzieq On Aug 20, 8:14 am, kellyelise <[EMAIL PROTECTED]> wrote: > Hi good people! > > I was wondering if anyone experienced the same things did when first > diagnosed. My white count never went above 25,000+ but my feet felt as > though they were made of lead. I couldn't even walk into the drugstore > without it completely wiping me out. I shuffled - couldn't even pick > my feet up. I have noticed that some had white counts way much higher > (over 100,000) - how in the world did you possibly function? I am just > curious as to whether my symptoms were due to something else other > than the high white count and CML. I am much better now. > > Thank you team! Your insight, advice and comments are invaluable!! > Kelly --~--~---------~--~----~------------~-------~--~----~ [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 -~----------~----~----~----~------~----~------~--~---
