Hi Jeanie, With all that you have gone through I'm glad to hear that your still doing well.
18's Marty On Sat, Mar 16, 2013 at 5:22 PM, <[email protected]> wrote: > ** > Hi and no, I never had the left side pain before CML but I have had right > side pain and it became worse when I went on Tasigna. They did MRI but > couldn't find anything. > I had gall bladder surgery years ago and thingk that right side pain could > be connected. > My first onc put me in the hospital twice to have my blood cleaned; I > don't think it was necessary. He finally put me on Sprycel while I was in > the hospital because nothing was bringing my counts down. > I was in the process of changing to Moffitt when I got sick, and so he was > the one who had my care at the time. > Thanks Marty, > Jeanie<3 > > In a message dated 3/14/2013 9:13:24 P.M. Eastern Daylight Time, > [email protected] writes: > > Hi Jeanie, > > To my knowledge I have only heard about a half dozen people going through > that process. > > Since your left side over the years always gave you some pain perhaps that > masked the problem when you first came down with CML??? > > Take care of yourself, and stay in touch. > > 18's > > Marty > > On Thu, Mar 14, 2013 at 5:52 PM, <[email protected]> wrote: > >> 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 <[email protected]> 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, <[email protected]> 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, >>> [email protected] writes: >>> >>> Thanks Pat - I appreciate it >>> >>> *From:* Pat <[email protected]> >>> *To:* CMLHope <[email protected]> >>> *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, [email protected] 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 [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 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 >>> [email protected]. >>> For more options, visit 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