Hi Marty good to hear from you. I remember the nurse who was running the blood cleaning machine pointing out all the white blood cells being cleaned out of my blood. I have it all written down in my faith journal that I started When I first got sick. My spleen was never a problem. But I do remember pain in my left side over the years I was wondering how many patients were hospitalized and their blood cleansed when first dx. More later. Jeanie
Sent from my iPhone On Mar 13, 2013, at 11:12 PM, Marty Gartenberg <wa2...@gmail.com> wrote: > Hi Jeanie, > > I would like to shake your son's hand for insisting that you go see a doctor > when you started having all of those problems. Sometimes we just don't want > to believe that something may be wrong with us and we just procrastinate. > Your not the only one because when I first knew something was wrong I did the > same. Not wanting to go get checked out. > > By the way, you mentioned that your WBC and platelets were in the millions > when you were first checked out. I don't think that your WBC was in the > millions but rather in the hundreds of thousands. Your platelets on the other > hand were probably in the millions. Was your spleen enlarged or did you have > any pain from your spleen? > > Once someone learns that they have CML or any other cancer then their life > does change forever. It is what we choose to do with out lives that really > matters. From what I can see about you is that your handling this very well, > and I applaud you for trying to help others. > > 18's Jeanie, > > Marty > > On Wed, Mar 13, 2013 at 4:31 PM, <icandoall...@aol.com> wrote: >> 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/ and the toll free number is >> 1-866-931-5165. >> Take care, >> Pat >> >> On Mar 10, 5:42 pm, 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/ >> ------------------------------------------------- >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to CMLHope@googlegroups.com >> To unsubscribe from this group, send email to >> cmlhope-unsubscr...@googlegroups.com >> For more options, visit this group at http://groups.google.com/group/CMLHope >> --- >> You received this message because you are subscribed to a topic in the >> Google Groups "CMLHope" group. >> To unsubscribe from this topic, visit >> https://groups.google.com/d/topic/cmlhope/Tx0yLOjocdE/unsubscribe?hl=en. >> To unsubscribe from this group and all its topics, send an email to >> cmlhope+unsubscr...@googlegroups.com. >> For more options, visit https://groups.google.com/groups/opt_out. >> >> >> >> >> -- >> -- >> [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 CMLHope@googlegroups.com >> To unsubscribe from this group, send email to >> cmlhope-unsubscr...@googlegroups.com >> 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 cmlhope+unsubscr...@googlegroups.com. >> For more options, visit https://groups.google.com/groups/opt_out. >> >> >> -- >> -- >> [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 CMLHope@googlegroups.com >> To unsubscribe from this group, send email to >> cmlhope-unsubscr...@googlegroups.com >> 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 cmlhope+unsubscr...@googlegroups.com. >> For more options, visit https://groups.google.com/groups/opt_out. > > -- > -- > [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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/groups/opt_out. > > -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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