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]_ (m ailto:[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]_ (mailto:[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]_ (mailto:[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]_ (mailto:[email protected]) writes: Thanks Pat - I appreciate it From: Pat <[email protected]_ (mailto:[email protected]) > To: CMLHope <[email protected]_ (mailto:[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/_ (http://cmlsociety.org/) and the toll free number is _1-866-931-5165_ (tel:1-866-931-5165) . Take care, Pat On Mar 10, 5:42 pm, [email protected]_ (mailto:[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/_ (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]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) --- You received this message because you are subscribed to a topic in the Google Groups "CMLHope" group. 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