Hi all, Just to keep the newbies updated as to what to expect on Gleevec and other Meds. I started was dx in Jan 2004 after flying home from a trip. I was so tired I couldn't hardly put one foot in front of the other, and as walking is my daily exercise, I started to complain to my son. He said for me to go to the doctor; well I didn't want to but went to my PCD and he insisted, even though I said I really didn't need it. I had never had much sickness in my life, and really didn't think it was anything serious. I had noticed a rapid heart beat and could feel my heart beating after exertion for while at rest for a while, but was trying to ignore it. The next day my PCD calls and tells me my WBC and platelets are in the millions; he had already gotten me a doctor's appointment with a local oncologist for the evening. I still didn't want to go, but my son insisted. >From that first doctor's appointment to now, my life was changed forever. At that time my oncologist had a blood lab in his office so he took a blood sample, and without any further testing, he told me he had good news and bad news. The bad news was that I probably had leukemia; the good news was that they had put a drug called Gleevec on the market, and that it would probably save my life. As I said, my platelets and WBC were in the millions. He immediately put me in the hospital as he said I could have a stroke from the high platelets. I was hooked up to a blood cleaning machine, and had my blood cleaned for 4 days straight, however it didn't do much good. They were giving me huge doses of Hydroxyurea along with a few other drugs. As I had never taken many pills, I ask the nurse what they were and the side effect. She didn't know but went to look it up. It seems the pills were huge to me and there were a lot of them. In the meantime I had to get the Gleevec okd by my insurance and there was a $2000 copay. more later-- Blessings Jeanie>3 2004 dx put on Hydroxurea and Gleevec 2008 Sept put on Tasigna 2008-9 Put on Sprycel In a message dated 3/10/2013 9:17:11 P.M. Eastern Daylight Time, mylis...@yahoo.ca writes:
Thanks Pat - I appreciate it From: Pat <pfemail...@gmail.com> To: CMLHope <cmlhope@googlegroups.com> Sent: Sunday, March 10, 2013 9:00:12 PM Subject: [CMLHope] Re: Thankyou Hi Mylissa - We're all glad to be of help. Wanted to give you contact info for the CML Society of Canada. The website is _http://cmlsociety.org/_ (http://cmlsociety.org/) and the toll free number is 1-866-931-5165. Take care, Pat On Mar 10, 5:42 pm, _mylis...@yahoo.ca_ (mailto:mylis...@yahoo.ca) wrote: > Hi there, > > I want to thank everyone for all the kind responses and helpful > suggestions. I can't tell you how much it means to hear that there is a > light at the end of the tunnel, I just need to be patient to get there. I > will absolutely try the dial soap trick and the tonic water to help with > the cramps. For cramps through the day, would it work to carry it in my > pocket? > > Marty, my name is Mylissa...didn't mean to be a mystery person - lol. I > live in Markham, Ontario, Canada. I am so glad I found this group...I > don't know anyone else with CML and my onc is not open to a lot of > questions and has told me not to research CML on the internet. Think he's > trying to keep me from getting scared. So it means a lot to hear from all > of you. It's reassuring to know that what I am going through is part of > the experience and not some new added problem. > > Have to say, this has been a frightening experience but things are > beginning to look up, with white cells normal now. I just had cytogenetic > testing done last Tuesday and should have the results back from that by the > end of March. In the meantime, in speaking to the onc about the bone pain, > he thought I should try one week at 200mg, and then try 300mg to see if I > tolerate that better. I sure hope so - one of the reasons I wouldn't want > to change from Gleevec is that the patent expires in April 2013 in > Canada.....which will hopefully make it more affordable. This is a big > issue for me, as I was recently terminated at work, while I've been off on > sick leave - so no more benefits once the notice period is over. I'm sure > that I will be denied benefits at any new job I get as this will then be a > "pre-existing" condition. So affordable meds would definitely be good! I > never knew medication could be so expensive! I keep telling myself I am > not allowed to throw up, because it would be like throwing up $130...lol. > > Thanks again to all who replied. Pat and Michele - I will have a read > through the links you sent me tonight; thanks for the info. > > 18's back to you Marty. > > Mylissa -- -- [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. 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