Re: [CMLHope] Re: Thankyou
) writes: Thanks Pat - I appreciate it From: Pat _pfemailbox@gmail.com_ (mailto:pfemail...@gmail.com) To: CMLHope _cmlhope@googlegroups.com_ (mailto: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_ (tel: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. To post to this group, send email to _CMLHope@googlegroups.com_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto:cmlhope-unsubscr...@googlegroups.com) 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. To unsubscribe from this topic, visit _https://groups.google.com/d/topic/cmlhope/Tx0yLOjocdE/unsubscribe?hl=en_ (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+_unsubscribe@googlegroups.com_ (mailto:unsubscr...@googlegroups.com) . For more options, visit _https://groups.google.com/groups/opt_out_ (https://groups.google.com/groups/opt_out) . -- -- [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 _CMLHope@googlegroups.com_ (mail to:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto:cmlhope-unsubscr...@googlegroups.com) 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 the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to _cmlhope+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit _https://groups.google.com/groups/opt_out_ (https://groups.google.com/groups/opt_out) . -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You
Re: [CMLHope] Re: Thankyou
, 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
Re: [CMLHope] Re: Thankyou
Gleevec quit working for after 5 years. Sprycel put me in remission. Good luck. How many Meg's are u on Jeanie Sent from my iPhone On Mar 14, 2013, at 10:33 PM, Penny boogie_woo...@yahoo.com wrote: Hi, I am Pennydiag. 2002 my story is very close to yours. This year Gleevec stopped working for me and I am back to being extremely tired. My onc has put me on Sprycel we shall see how that works. I hope you have continued success with Gleevec. On Sunday, March 10, 2013 6:42:53 PM UTC-6, myli...@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 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.
Re: [CMLHope] Re: Thankyou
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 Jeanie3 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 thetoll 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
Re: [CMLHope] Re: Thankyou
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, icandoall...@aol.com 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 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 Jeanie3 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
[CMLHope] Re: Thankyou
Hi, I am Pennydiag. 2002 my story is very close to yours. This year Gleevec stopped working for me and I am back to being extremely tired. My onc has put me on Sprycel we shall see how that works. I hope you have continued success with Gleevec. On Sunday, March 10, 2013 6:42:53 PM UTC-6, myli...@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 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.
Re: [CMLHope] Re: Thankyou
Hi Penny, Thanks for replying. In reading some of the notes I've received, I have learned just how lucky I amso many people on this board have had a much harder row to hoe. It is also sounds like many people who find Gleevec no longer works are switched to sprycel and do very well. If sprycel isn't the drug for you (but I pray it is), one of the other ones will be. Sounds like the drugs are different enough that where one fails, another succeeds. My thoughts and prayers are with you. Please keep in touch and let me know how you are doing. Best wishes, Mylissa From: Penny boogie_woo...@yahoo.com To: cmlhope@googlegroups.com Sent: Thursday, March 14, 2013 10:33:30 PM Subject: [CMLHope] Re: Thankyou Hi, I am Pennydiag. 2002 my story is very close to yours. This year Gleevec stopped working for me and I am back to being extremely tired. My onc has put me on Sprycel we shall see how that works. I hope you have continued success with Gleevec. On Sunday, March 10, 2013 6:42:53 PM UTC-6, myli...@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.
Re: [CMLHope] Re: Thankyou
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 Jeanie3 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
Re: [CMLHope] Re: Thankyou
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 Jeanie3 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
[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 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.
Re: [CMLHope] Re: Thankyou
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.
