Re: [CMLHope] Re: French health service further investigating Gleevec
Interesting to read your mail. I just returned from a trip to central Asia, and while there had a short bout of "Pasha's Revenge". I took some Cipro...and had extremely sore muscles for a few days. I never had Cipro before. Wasn't sure what caused the severe muscle aches. Hm~ Angie What lies behind us and what lies before us are tiny matters compared to what lies within us Angie --- On Mon, 9/19/11, LearnToBallroomDanceOnline.com wrote: From: LearnToBallroomDanceOnline.com Subject: Re: [CMLHope] Re: French health service further investigating Gleevec To: cmlhope@googlegroups.com Date: Monday, September 19, 2011, 4:51 AM Hey Beth, Just curious, have you taken the antibiotics Cipro, Levaquinn or Avelox? They are prescribed for many things but often for UTI's. I had extreme fatigue and muscle pain from them. Michele On Sun, Sep 18, 2011 at 9:07 PM, wrote: Dear Pat and Marty and all my other fellow CMLers, I am very grateful for the medicines which keep us alive. I am also aware of how often people with CML are given little or wrong information from doctors and even said "experts". I am pleased for you Pat, that you got a third expert - someone who works with CML to guide you in your treatment and decision making. Being properly educated about our meds, the potential risks, side effects and complications that can arise feels so important to me. This sight is so important to so many of us because it is a place where people can share knowledge, resources, as well as tell their stories of both challenge and hope with those who are sharing a similar journey. I am deeply grateful for all of you out there. My question for today is if anyone on sprycel...or potentially gleevec or tasigna as well...has had a rise in their CPK muscle enzymes...I was doing O.K.. enough managing my side effects from Sprycel but then got hit from behind in June with increased swelling..which I know is a known side effectwhile that has been rectified with diuretics etc.the CPK has not gone down..and I have felt truly awful, with a muscle fatigue that makes it hard to walk, let alone go up and down stairs or be able to wok.. One oncologist thinks it' a sprycel side effect that sprang up in month 8 of taking the med. Another oncologist thinks the sprycel made my body more vulnerable to another disease process and is sending me to a rheumatologist. I am an otherwise healthy 49 year old. It would help me immensely to know if anyone out there has had this issue as well as how they treated it and if it resolved or not while still taking the TKI meds. Thanks so very much, Beth in Chicago -- [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 -- mich...@learntoballroomdanceonline.com www.LearntoBallroomDanceOnline.com -- [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 -- [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
Re: [CMLHope] Re: French health service further investigating Gleevec
Michele, Two years ago I had a sinus infection and a Doctor prescribed Avelox and Fluconazole and a day later I got very sick. Extreme fatigue and couldn't eat at all. This went on for 26 days, I stopped taking my Gleevec at that time also. I was told that one or both drugs caused my Gleevec to increase in dosage. Bottom line is I'm very careful what any Doctor gives me if I have any kind of a problem. Greenie Fort Myers, FL. Club member #48 In a message dated 9/18/2011 9:52:01 P.M. Pacific Daylight Time, ballroom...@gmail.com writes: Hey Beth, Just curious, have you taken the antibiotics Cipro, Levaquinn or Avelox? They are prescribed for many things but often for UTI's. I had extreme fatigue and muscle pain from them. Michele On Sun, Sep 18, 2011 at 9:07 PM, <_Bkbarney@aol.com_ (mailto:bkbar...@aol.com) > wrote: Dear Pat and Marty and all my other fellow CMLers, I am very grateful for the medicines which keep us alive. I am also aware of how often people with CML are given little or wrong information from doctors and even said "experts". I am pleased for you Pat, that you got a third expert - someone who works with CML to guide you in your treatment and decision making. Being properly educated about our meds, the potential risks, side effects and complications that can arise feels so important to me. This sight is so important to so many of us because it is a place where people can share knowledge, resources, as well as tell their stories of both challenge and hope with those who are sharing a similar journey. I am deeply grateful for all of you out there. My question for today is if anyone on sprycel...or potentially gleevec or tasigna as well...has had a rise in their CPK muscle enzymes...I was doing O.K.. enough managing my side effects from Sprycel but then got hit from behind in June with increased swelling..which I know is a known side effectwhile that has been rectified with diuretics etc.the CPK has not gone down..and I have felt truly awful, with a muscle fatigue that makes it hard to walk, let alone go up and down stairs or be able to wok.. One oncologist thinks it' a sprycel side effect that sprang up in month 8 of taking the med. Another oncologist thinks the sprycel made my body more vulnerable to another disease process and is sending me to a rheumatologist. I am an otherwise healthy 49 year old. It would help me immensely to know if anyone out there has had this issue as well as how they treated it and if it resolved or not while still taking the TKI meds. Thanks so very much, Beth in Chicago -- [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) -- mich...@learntoballroomdanceonline.com _www.LearntoBallroomDanceOnline.com_ (http://www.learntoballroomdanceonline.com/) -- [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 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_ (http://groups.google.com/group/CMLHope) -- [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
Re: [CMLHope] Re: French health service further investigating Gleevec
Thanks Patrick. This fatigue, borders on low grade pain...but it feels like complete exhaustion of the muscle ans doesn't respond to advil as a means of relaxing the muscles... just not sure what is going on...but to bed I go for tonight. Good night my fellow CMLers. feel goodBeth -- [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
Re: [CMLHope] Re: French health service further investigating Gleevec
No antibiotics taken, but thanks for asking me Michele and trying to help me figure out what's going onPat- I will ask the docs about what type of cpk is specifically elevated...thanks for your help as well..it's very scary..Beth -- [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
Re: [CMLHope] Re: French health service further investigating Gleevec
Hey Beth, Just curious, have you taken the antibiotics Cipro, Levaquinn or Avelox? They are prescribed for many things but often for UTI's. I had extreme fatigue and muscle pain from them. Michele On Sun, Sep 18, 2011 at 9:07 PM, wrote: > Dear Pat and Marty and all my other fellow CMLers, > > I am very grateful for the medicines which keep us alive. I am also aware > of how often people with CML are given little or wrong information from > doctors and even said "experts". I am pleased for you Pat, that you got a > third expert - someone who works with CML to guide you in your treatment and > decision making. Being properly educated about our meds, the potential > risks, side effects and complications that can arise feels so important to > me. > > This sight is so important to so many of us because it is a place where > people can share knowledge, resources, as well as tell their stories of > both challenge and hope with those who are sharing a similar journey. I am > deeply grateful for all of you out there. > > My question for today is if anyone on sprycel...or potentially gleevec or > tasigna as well...has had a rise in their CPK muscle enzymes...I was doing > O.K.. enough managing my side effects from Sprycel but then got hit from > behind in June with increased swelling..which I know is a known side > effectwhile that has been rectified with diuretics etc.the CPK has > not gone down..and I have felt truly awful, with a muscle fatigue that makes > it hard to walk, let alone go up and down stairs or be able to wok.. One > oncologist thinks it' a sprycel side effect that sprang up in month 8 of > taking the med. Another oncologist thinks the sprycel made my body more > vulnerable to another disease process and is sending me to a rheumatologist. > I am an otherwise healthy 49 year old. > > It would help me immensely to know if anyone out there has had this issue > as well as how they treated it and if it resolved or not while still taking > the TKI meds. > > Thanks so very much, > > Beth in Chicago > > -- > [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 > -- mich...@learntoballroomdanceonline.com www.LearntoBallroomDanceOnline.com -- [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
Re: [CMLHope] Re: French health service further investigating Gleevec
Beth,I accidentally discovered that what I had been reporting as fatigue was low-level pain. (I discovered this after several occasions of treating a more severe particular pain and spontaneously getting relief from my "fatigue". - It dawned on me that a pain pill isn't a pep pill so it couldn't be relieving fatigue!)I don't know if it applies to your case but I suspect it's more common than one would think.Patrick on Galveston Island :) --- On Sun, 9/18/11, bkbar...@aol.com wrote: From: bkbar...@aol.com Subject: Re: [CMLHope] Re: French health service further investigating Gleevec To: cmlhope@googlegroups.com Date: Sunday, September 18, 2011, 11:07 PM Dear Pat and Marty and all my other fellow CMLers, I am very grateful for the medicines which keep us alive. I am also aware of how often people with CML are given little or wrong information from doctors and even said "experts". I am pleased for you Pat, that you got a third expert - someone who works with CML to guide you in your treatment and decision making. Being properly educated about our meds, the potential risks, side effects and complications that can arise feels so important to me. This sight is so important to so many of us because it is a place where people can share knowledge, resources, as well as tell their stories of both challenge and hope with those who are sharing a similar journey. I am deeply grateful for all of you out there. My question for today is if anyone on sprycel...or potentially gleevec or tasigna as well...has had a rise in their CPK muscle enzymes...I was doing O.K.. enough managing my side effects from Sprycel but then got hit from behind in June with increased swelling..which I know is a known side effectwhile that has been rectified with diuretics etc.the CPK has not gone down..and I have felt truly awful, with a muscle fatigue that makes it hard to walk, let alone go up and down stairs or be able to wok.. One oncologist thinks it' a sprycel side effect that sprang up in month 8 of taking the med. Another oncologist thinks the sprycel made my body more vulnerable to another disease process and is sending me to a rheumatologist. I am an otherwise healthy 49 year old. It would help me immensely to know if anyone out there has had this issue as well as how they treated it and if it resolved or not while still taking the TKI meds. Thanks so very much, Beth in Chicago -- [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 -- [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
Re: [CMLHope] Re: French health service further investigating Gleevec
Dear Pat and Marty and all my other fellow CMLers, I am very grateful for the medicines which keep us alive. I am also aware of how often people with CML are given little or wrong information from doctors and even said "experts". I am pleased for you Pat, that you got a third expert - someone who works with CML to guide you in your treatment and decision making. Being properly educated about our meds, the potential risks, side effects and complications that can arise feels so important to me. This sight is so important to so many of us because it is a place where people can share knowledge, resources, as well as tell their stories of both challenge and hope with those who are sharing a similar journey. I am deeply grateful for all of you out there. My question for today is if anyone on sprycel...or potentially gleevec or tasigna as well...has had a rise in their CPK muscle enzymes...I was doing O.K.. enough managing my side effects from Sprycel but then got hit from behind in June with increased swelling..which I know is a known side effectwhile that has been rectified with diuretics etc.the CPK has not gone down..and I have felt truly awful, with a muscle fatigue that makes it hard to walk, let alone go up and down stairs or be able to wok.. One oncologist thinks it' a sprycel side effect that sprang up in month 8 of taking the med. Another oncologist thinks the sprycel made my body more vulnerable to another disease process and is sending me to a rheumatologist. I am an otherwise healthy 49 year old. It would help me immensely to know if anyone out there has had this issue as well as how they treated it and if it resolved or not while still taking the TKI meds. Thanks so very much, Beth in Chicago -- [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
Re: [CMLHope] Re: French health service further investigating Gleevec
Hi Pat, I agree that there should be more studies done about the side effects and how best to handle them. Any of the drugs that are available today certinally have their own set of side effects, some worse then others depending on the person that is taking them. However, the way I look at it is that Cancer itself is in fact the most toxic and everything else that helps get rid of it is only secondary. 18's Marty On Sat, Sep 17, 2011 at 5:12 PM, Pat Elliott wrote: > Hi Marty – > > Yes, it would be foolish for anyone taking a life-saving medication to risk > their life by stopping the medication due to worries about a “possible” side > effect. At the same time, we must continue to expand our treatment options > as well as our knowledge about side effects and the harm they can cause. As > the new president of MD Anderson Cancer Center said this weekend during > their survivor’s conference, the focus of today’s research includes learning > more about the side effects of treatment and working on ways to make the > multiple treatment methods used for cancer less toxic for the patients that > receive them. That’s good news for all of us! > > ** ** > > Take care > > Pat Elliott > > Phoenix, Arizona > > ** ** > > *From:* cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] *On > Behalf Of *Martin Gartenberg > *Sent:* Friday, September 16, 2011 6:09 PM > *To:* cmlhope@googlegroups.com > *Subject:* Re: [CMLHope] Re: French health service further investigating > Gleevec > > ** ** > > Hi Pat, > > > > Of course people should know as much as possible about the drugs they are > taking. Every drug has a side effect on someone but the alternative "side > effect" of not taking Gleevec is not acceptable. > > > > If you were told that you may have a secondary cancer down the road if you > continued taking Gleevec would you stop taking it? There is a key word here, > and that is "may" happen. > > > > So let's say that you switch TKI's then what about that new one? Could that > one cause something down the road? What do you do? > > > > I wish you much health and as long as your alive then that is what really > matters, doesn't it... > > > > 18's (Stands for life) > > > > Marty > > On Wed, Sep 14, 2011 at 5:19 PM, Pat Elliott wrote: > > > CML is my second cancer. I too want to know all of the risks and potential > side effects, especially as more TKIs, and therefore more choices, become > available. My medical team and I balance multiple considerations, and need > data to do so. We have already had to address the potential risk of > increasing the chance of a recurrence of the first cancer while considering > changing my TKI. This involved two "expert" opinions, one of which was > inaccurate. Fortunately we were able to consult with a third expert, one > who > is only focused on CML, and get the data we needed to make the right > choices. Separately, I feel very strongly that patients with any type of > cancer deserve to know the full risks they face from their treatments, > including the risk of developing blood cancers down the road, so they can > make informed choices, be aware of the potential warning signs, and > optimize > their chances for recovery. > > Pat Elliott > Phoenix, Arizona > > > > -- > [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 > > ** ** > > -- > [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 > > -- > [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 t
RE: [CMLHope] Re: French health service further investigating Gleevec
Hi Marty - Yes, it would be foolish for anyone taking a life-saving medication to risk their life by stopping the medication due to worries about a "possible" side effect. At the same time, we must continue to expand our treatment options as well as our knowledge about side effects and the harm they can cause. As the new president of MD Anderson Cancer Center said this weekend during their survivor's conference, the focus of today's research includes learning more about the side effects of treatment and working on ways to make the multiple treatment methods used for cancer less toxic for the patients that receive them. That's good news for all of us! Take care Pat Elliott Phoenix, Arizona From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Martin Gartenberg Sent: Friday, September 16, 2011 6:09 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Re: French health service further investigating Gleevec Hi Pat, Of course people should know as much as possible about the drugs they are taking. Every drug has a side effect on someone but the alternative "side effect" of not taking Gleevec is not acceptable. If you were told that you may have a secondary cancer down the road if you continued taking Gleevec would you stop taking it? There is a key word here, and that is "may" happen. So let's say that you switch TKI's then what about that new one? Could that one cause something down the road? What do you do? I wish you much health and as long as your alive then that is what really matters, doesn't it... 18's (Stands for life) Marty On Wed, Sep 14, 2011 at 5:19 PM, Pat Elliott wrote: CML is my second cancer. I too want to know all of the risks and potential side effects, especially as more TKIs, and therefore more choices, become available. My medical team and I balance multiple considerations, and need data to do so. We have already had to address the potential risk of increasing the chance of a recurrence of the first cancer while considering changing my TKI. This involved two "expert" opinions, one of which was inaccurate. Fortunately we were able to consult with a third expert, one who is only focused on CML, and get the data we needed to make the right choices. Separately, I feel very strongly that patients with any type of cancer deserve to know the full risks they face from their treatments, including the risk of developing blood cancers down the road, so they can make informed choices, be aware of the potential warning signs, and optimize their chances for recovery. Pat Elliott Phoenix, Arizona -- [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 -- [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 -- [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
Re: [CMLHope] Re: French health service further investigating Gleevec
Hi Pat, Of course people should know as much as possible about the drugs they are taking. Every drug has a side effect on someone but the alternative "side effect" of not taking Gleevec is not acceptable. If you were told that you may have a secondary cancer down the road if you continued taking Gleevec would you stop taking it? There is a key word here, and that is "may" happen. So let's say that you switch TKI's then what about that new one? Could that one cause something down the road? What do you do? I wish you much health and as long as your alive then that is what really matters, doesn't it... 18's (Stands for life) Marty On Wed, Sep 14, 2011 at 5:19 PM, Pat Elliott wrote: > CML is my second cancer. I too want to know all of the risks and potential > side effects, especially as more TKIs, and therefore more choices, become > available. My medical team and I balance multiple considerations, and need > data to do so. We have already had to address the potential risk of > increasing the chance of a recurrence of the first cancer while considering > changing my TKI. This involved two "expert" opinions, one of which was > inaccurate. Fortunately we were able to consult with a third expert, one > who > is only focused on CML, and get the data we needed to make the right > choices. Separately, I feel very strongly that patients with any type of > cancer deserve to know the full risks they face from their treatments, > including the risk of developing blood cancers down the road, so they can > make informed choices, be aware of the potential warning signs, and > optimize > their chances for recovery. > > Pat Elliott > Phoenix, Arizona > > > -- > [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 > -- [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
RE: [CMLHope] Re: French health service further investigating Gleevec
CML is my second cancer. I too want to know all of the risks and potential side effects, especially as more TKIs, and therefore more choices, become available. My medical team and I balance multiple considerations, and need data to do so. We have already had to address the potential risk of increasing the chance of a recurrence of the first cancer while considering changing my TKI. This involved two "expert" opinions, one of which was inaccurate. Fortunately we were able to consult with a third expert, one who is only focused on CML, and get the data we needed to make the right choices. Separately, I feel very strongly that patients with any type of cancer deserve to know the full risks they face from their treatments, including the risk of developing blood cancers down the road, so they can make informed choices, be aware of the potential warning signs, and optimize their chances for recovery. Pat Elliott Phoenix, Arizona -- [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
