Re: [CMLHope] Re: stopping meds.
Hi Beth and thanks so much. I am doing really well, and have considered cutting down to 50 mgs daily on my own. Like you said, we have to listen to our body and go from there. I am so thankful we have other drugs now to fall back on if our drug of choice fails us. My main problem is insomnia and side pain. They can't find anything wrong with my right side, but it started hurting when I was on Tasigna, and never quit. I take 1/2 dose of Ambian for sleep, but it doesn't work that well. I had gall bladder removal about 15 years ago and this right side pain could be related to that. They just cant' find anything. Good luck and thanks again, Jeanie<3 In a message dated 9/30/2012 11:56:54 P.M. Eastern Daylight Time, bkbar...@aol.com writes: HI Jeannie, sorry for the late response..bad sciatica is keeping me away from sitting at the computer... as Tom shared, sprycel comes in 20 mg tabs so you can take, one, two, three, four or five based upon individual needs and outcomes. You are right about not cutting 50's. I asked about it and they said absolutely not. Thecoating is protective and allowso the drug to absorb when and where it's supposed to. Hope you find the doseage that works for you...and/or you can consider trying bosutinib or ponatinib. ..(I am contemplating trying a low dose of ponatinib. But first, I will go for my first blood work since being on 40 mg instead of 50 next week. If the results are good..I may try a different dose of sprycel first...before trying anything else..) "If it's not broke don't fix it" sounds resonable except when you are dealing with very serious side effects as well as significant quality of life issues. It's wonderful that sprycel has put us both into remission for the first time...as it's very potent... it's potency affects other organs and parts of the body, tissue and cells..etcI am so grateful for these drugs..and also grateful for my oncologists who want the blessing of life, but also the best quality of life possible for me and are willing to work with me to try and find the best option for me. It seems there are risks to taking larger doses and risks to taking smaller ones... sometimes our bodies decide for us, what we can tolerate..then there are times where, in my humble opinion, it should be an individual's call to try what feels right for their body my oncologist at U of C called the pharmaceutical for me and was able to get access to compassionate rapid access for a lower dose of ponatinib if I want to try it. This is instead of the trials which the standard dose is 45, I would start at 30..possibly 15 ( they come in 15 mg tabs you take three a day)..This is an option for people who are intolerant of the other meds I want you to know there are options and possibilities...and to really try and listen to your body and advocate for yourself. For me, I have never been able to tolerate a whole dose of anything..way too toxic fo my system..I learned this the hard way,...so I truly believe that I should not try a new drug at a whole dose, with a high probability of making myself very sick, and then taper down to what I can tolerate..I would rather titrate up to what I can tolerate and use the lowest level of what works best for me. My oncologist believes you can try different things if need be, and if doesn't work as well..always go back to what you know,and how you know you will feel on the med. It seems when people go off, change, and then need to return, there appears to not be a problem with doing so. Hope this is helpful to someone out there.. my best, Beth I hope you feel better soon..stay positive...sending a big hug...to you and everybody else out there..we are in this together..there are many new possibilities on the horizon...HOPE is alive and well. -Original Message- From: ICANDOALLTTC To: cmlhope Sent: Sat, Sep 15, 2012 3:53 pm Subject: Re: [CMLHope] Re: stopping meds. Thanks Beth, Yes I have asked my Onc to lower my dose, but he says if it isn't broke don't fix it. I go to the Moffitt Cancer Center and they are a research facility but my onc didn't mention the other drugs. I think he is happy I am in remission and Sprycel was the only drug that put me in remission. He also said none of his patients have had PE and that is something I should no worry about, but I do as I have heard bad stories about it. Does Sprycel come in 40 mgs? I have 50 mg tablets. They tell you not to cut them. Thanks again, Jeanie<3 In a message dated 9/4/2012 11:33:57 P.M. Eastern Daylight Time, _bkbarney@aol.com_ (mailto:bkbar...@aol.com) writes: HI Jeanie, thanks for sharing. I am so sorry you have had such a hard time of it. Sprycel is a very potent drug. 300X plus that of gleevec. Your side effects s
Re: [CMLHope] Re: stopping meds.
HI Jeannie, sorry for the late response..bad sciatica is keeping me away from sitting at the computer... as Tom shared, sprycel comes in 20 mg tabs so you can take, one, two, three, four or five based upon individual needs and outcomes. You are right about not cutting 50's. I asked about it and they said absolutely not. Thecoating is protective and allowso the drug to absorb when and where it's supposed to. Hope you find the doseage that works for you...and/or you can consider trying bosutinib or ponatinib. ..(I am contemplating trying a low dose of ponatinib. But first, I will go for my first blood work since being on 40 mg instead of 50 next week. If the results are good..I may try a different dose of sprycel first...before trying anything else..) "If it's not broke don't fix it" sounds resonable except when you are dealing with very serious side effects as well as significant quality of life issues. It's wonderful that sprycel has put us both into remission for the first time...as it's very potent... it's potency affects other organs and parts of the body, tissue and cells..etcI am so grateful for these drugs..and also grateful for my oncologists who want the blessing of life, but also the best quality of life possible for me and are willing to work with me to try and find the best option for me. It seems there are risks to taking larger doses and risks to taking smaller ones... sometimes our bodies decide for us, what we can tolerate..then there are times where, in my humble opinion, it should be an individual's call to try what feels right for their body my oncologist at U of C called the pharmaceutical for me and was able to get access to compassionate rapid access for a lower dose of ponatinib if I want to try it. This is instead of the trials which the standard dose is 45, I would start at 30..possibly 15 ( they come in 15 mg tabs you take three a day)..This is an option for people who are intolerant of the other meds I want you to know there are options and possibilities...and to really try and listen to your body and advocate for yourself. For me, I have never been able to tolerate a whole dose of anything..way too toxic fo my system..I learned this the hard way,...so I truly believe that I should not try a new drug at a whole dose, with a high probability of making myself very sick, and then taper down to what I can tolerate..I would rather titrate up to what I can tolerate and use the lowest level of what works best for me. My oncologist believes you can try different things if need be, and if doesn't work as well..always go back to what you know,and how you know you will feel on the med. It seems when people go off, change, and then need to return, there appears to not be a problem with doing so. Hope this is helpful to someone out there.. my best, Beth I hope you feel better soon..stay positive...sending a big hug...to you and everybody else out there..we are in this together..there are many new possibilities on the horizon...HOPE is alive and well. -Original Message- From: ICANDOALLTTC To: cmlhope Sent: Sat, Sep 15, 2012 3:53 pm Subject: Re: [CMLHope] Re: stopping meds. Thanks Beth, Yes I have asked my Onc to lower my dose, but he says if it isn't broke don't fix it. I go to the Moffitt Cancer Center and they are a research facility but my onc didn't mention the other drugs. I think he is happy I am in remission and Sprycel was the only drug that put me in remission. He also said none of his patients have had PE and that is something I should no worry about, but I do as I have heard bad stories about it. Does Sprycel come in 40 mgs? I have 50 mg tablets. They tell you not to cut them. Thanks again, Jeanie<3 In a message dated 9/4/2012 11:33:57 P.M. Eastern Daylight Time, bkbar...@aol.com writes: HI Jeanie, thanks for sharing. I am so sorry you have had such a hard time of it. Sprycel is a very potent drug. 300X plus that of gleevec. Your side effects seem to suggest a lot of toxicity. Have you had a second opinion regarding dosage? I don't know what other's feel, but I think when we have a very hard time with the drugs, another pair of expert eyes and ears can sometimes help us. I don't know what is best for you, but 100 mgs is now the standard doseage of sprycel, it used to be much higher until their research showed that more of the drug produced serious side effects more often without any added benefits of remission. Many people take 50, or 70, 80I'm doing 40 right now...a slightly less dose seems to make a big difference in side effects in most people. The plureal effusion..risk also lessons with a lesser doseage also, just an FYI in case you may not know..., ponatinib is now available for compassionate use, it does not seem to have the same level of PE risk. Compassionate use is
Re: [CMLHope] Re: stopping meds.
Thanks Tom, Jeanie<3 In a message dated 9/5/2012 11:28:08 A.M. Eastern Daylight Time, ted...@aol.com writes: Jeanie...like Beth, I have had trouble with Sprycel...and am now on 20mgs...so lower doses are being prescribed. Tom in KY In a message dated 9/4/2012 11:33:58 P.M. Eastern Daylight Time, bkbar...@aol.com writes: HI Jeanie, thanks for sharing. I am so sorry you have had such a hard time of it. Sprycel is a very potent drug. 300X plus that of gleevec. Your side effects seem to suggest a lot of toxicity. Have you had a second opinion regarding dosage? I don't know what other's feel, but I think when we have a very hard time with the drugs, another pair of expert eyes and ears can sometimes help us. I don't know what is best for you, but 100 mgs is now the standard doseage of sprycel, it used to be much higher until their research showed that more of the drug produced serious side effects more often without any added benefits of remission. Many people take 50, or 70, 80I'm doing 40 right now...a slightly less dose seems to make a big difference in side effects in most people. The plureal effusion..risk also lessons with a lesser doseage also, just an FYI in case you may not know..., ponatinib is now available for compassionate use, it does not seem to have the same level of PE risk. Compassionate use is if you are intolerant or resistant to the three other drugs. You qualify. The drug company appears to be being quite generous with it's use right now. They have rapid access for those who need it. For all of us out there, we need to keep ourselves and each other apprised of options ...as we come to know them.. there is hopeand blessings that we have each otherand the constant research that supports more and more options...may you feel some relief from your toxicity... Peace.. Keep us posted. hug,Beth -Original Message- From: ICANDOALLTTC To: cmlhope Sent: Tue, Sep 4, 2012 2:43 pm Subject: Re: [CMLHope] Re: stopping meds. Hi Beth, I was started on Sprycel after the two other drugs, Gleevec and Tasigna just quit on me. They started me on 300 megs and my counts started dropping rapidly. Then I was put on 100 mgs daily and it put me in remission in 3 months. All this while they were doing bone marrow checks every month. Some of my side effects are: heavy heart beat felt in chest headaches daily pain in my right side tired weak My blood pressure has gone up lately also. I am worried about PE. Hope this helps Beth. Jeanie<3 In a message dated 8/29/2012 10:49:15 A.M. Eastern Daylight Time, bkbar...@aol.com writes: Carolyn, Have you had plural efusion before? Since you have been on a low dose of sprycel for years, has this happened before to you? ARe you on a diuretic on a regular basis? I am on sprycel as well, have been for the last two years. concerned about swelling, but manage it through diuretic and potassium. just wondered what your history has been? How is your muscle fatigue on the sprycel? thanks for the info, helpful to me to talk withothers on the same meds. Beth -Original Message- From: TEDBDD To: cmlhope Sent: Tue, Aug 28, 2012 7:48 am Subject: Re: [CMLHope] Re: stopping meds. RichardI am totally with you and your decision. The longer I live with CML the more I understand that there are few "givens". Each of us reacts differently to the TKI's and we must make individual decisions. Like you, I am so grateful for these amazing drugs that have enabled us all to enjoy life in a way not possible 20 years ago. All the best in your journey. Tom in KY In a message dated 8/27/2012 11:50:47 P.M. Eastern Daylight Time, richard1huff...@comcast.net writes: Each of us need to do what is best for that person. My situation is being monitored by some of our best specialists. I have other major medical problems that are being monitored also. I have a heart issues, lung issues from three bouts with pnemonia when I was young and 40 years of smoking. Some of the newer meds are under consideration but with Gleevec's history of complications compared with the newer meds know problems to date makes me pause and ask a lot of questions about what would me right for me. I smiply post what is happening to me without recommendation what would be right in anyone else's situation. The one problem I can help address is that CML is becoming a lifetime condition and not the death sentence is used to be. We are so fortunate to have some of our members that survived until the need meds were found. They are my strength to challange CML headon in a different direction than most CML Specialists and CMLer's. Shortly after my diagnosis I discussed whith my ONC about participating in the trials of available other that Gleevec. He advised me to take Gleevec as it wasn't my time to
Re: [CMLHope] Re: stopping meds.
Thanks Beth, Yes I have asked my Onc to lower my dose, but he says if it isn't broke don't fix it. I go to the Moffitt Cancer Center and they are a research facility but my onc didn't mention the other drugs. I think he is happy I am in remission and Sprycel was the only drug that put me in remission. He also said none of his patients have had PE and that is something I should no worry about, but I do as I have heard bad stories about it. Does Sprycel come in 40 mgs? I have 50 mg tablets. They tell you not to cut them. Thanks again, Jeanie<3 In a message dated 9/4/2012 11:33:57 P.M. Eastern Daylight Time, bkbar...@aol.com writes: HI Jeanie, thanks for sharing. I am so sorry you have had such a hard time of it. Sprycel is a very potent drug. 300X plus that of gleevec. Your side effects seem to suggest a lot of toxicity. Have you had a second opinion regarding dosage? I don't know what other's feel, but I think when we have a very hard time with the drugs, another pair of expert eyes and ears can sometimes help us. I don't know what is best for you, but 100 mgs is now the standard doseage of sprycel, it used to be much higher until their research showed that more of the drug produced serious side effects more often without any added benefits of remission. Many people take 50, or 70, 80I'm doing 40 right now...a slightly less dose seems to make a big difference in side effects in most people. The plureal effusion..risk also lessons with a lesser doseage also, just an FYI in case you may not know..., ponatinib is now available for compassionate use, it does not seem to have the same level of PE risk. Compassionate use is if you are intolerant or resistant to the three other drugs. You qualify. The drug company appears to be being quite generous with it's use right now. They have rapid access for those who need it. For all of us out there, we need to keep ourselves and each other apprised of options ...as we come to know them.. there is hopeand blessings that we have each otherand the constant research that supports more and more options...may you feel some relief from your toxicity... Peace.. Keep us posted. hug,Beth -Original Message- From: ICANDOALLTTC To: cmlhope Sent: Tue, Sep 4, 2012 2:43 pm Subject: Re: [CMLHope] Re: stopping meds. Hi Beth, I was started on Sprycel after the two other drugs, Gleevec and Tasigna just quit on me. They started me on 300 megs and my counts started dropping rapidly. Then I was put on 100 mgs daily and it put me in remission in 3 months. All this while they were doing bone marrow checks every month. Some of my side effects are: heavy heart beat felt in chest headaches daily pain in my right side tired weak My blood pressure has gone up lately also. I am worried about PE. Hope this helps Beth. Jeanie<3 In a message dated 8/29/2012 10:49:15 A.M. Eastern Daylight Time, bkbar...@aol.com writes: Carolyn, Have you had plural efusion before? Since you have been on a low dose of sprycel for years, has this happened before to you? ARe you on a diuretic on a regular basis? I am on sprycel as well, have been for the last two years. concerned about swelling, but manage it through diuretic and potassium. just wondered what your history has been? How is your muscle fatigue on the sprycel? thanks for the info, helpful to me to talk withothers on the same meds. Beth -Original Message- From: TEDBDD To: cmlhope Sent: Tue, Aug 28, 2012 7:48 am Subject: Re: [CMLHope] Re: stopping meds. RichardI am totally with you and your decision. The longer I live with CML the more I understand that there are few "givens". Each of us reacts differently to the TKI's and we must make individual decisions. Like you, I am so grateful for these amazing drugs that have enabled us all to enjoy life in a way not possible 20 years ago. All the best in your journey. Tom in KY In a message dated 8/27/2012 11:50:47 P.M. Eastern Daylight Time, richard1huff...@comcast.net writes: Each of us need to do what is best for that person. My situation is being monitored by some of our best specialists. I have other major medical problems that are being monitored also. I have a heart issues, lung issues from three bouts with pnemonia when I was young and 40 years of smoking. Some of the newer meds are under consideration but with Gleevec's history of complications compared with the newer meds know problems to date makes me pause and ask a lot of questions about what would me right for me. I smiply post what is happening to me without recommendation what would be right in anyone else's situation. The one problem I can help address is that CML is becoming a lifetime condition and not the death sentence is used to be. We are so fortunate to have some of our members that survived
Re: [CMLHope] Re: stopping meds.
Jeanie...like Beth, I have had trouble with Sprycel...and am now on 20mgs...so lower doses are being prescribed. Tom in KY In a message dated 9/4/2012 11:33:58 P.M. Eastern Daylight Time, bkbar...@aol.com writes: HI Jeanie, thanks for sharing. I am so sorry you have had such a hard time of it. Sprycel is a very potent drug. 300X plus that of gleevec. Your side effects seem to suggest a lot of toxicity. Have you had a second opinion regarding dosage? I don't know what other's feel, but I think when we have a very hard time with the drugs, another pair of expert eyes and ears can sometimes help us. I don't know what is best for you, but 100 mgs is now the standard doseage of sprycel, it used to be much higher until their research showed that more of the drug produced serious side effects more often without any added benefits of remission. Many people take 50, or 70, 80I'm doing 40 right now...a slightly less dose seems to make a big difference in side effects in most people. The plureal effusion..risk also lessons with a lesser doseage also, just an FYI in case you may not know..., ponatinib is now available for compassionate use, it does not seem to have the same level of PE risk. Compassionate use is if you are intolerant or resistant to the three other drugs. You qualify. The drug company appears to be being quite generous with it's use right now. They have rapid access for those who need it. For all of us out there, we need to keep ourselves and each other apprised of options ...as we come to know them.. there is hopeand blessings that we have each otherand the constant research that supports more and more options...may you feel some relief from your toxicity... Peace.. Keep us posted. hug,Beth -Original Message- From: ICANDOALLTTC To: cmlhope Sent: Tue, Sep 4, 2012 2:43 pm Subject: Re: [CMLHope] Re: stopping meds. Hi Beth, I was started on Sprycel after the two other drugs, Gleevec and Tasigna just quit on me. They started me on 300 megs and my counts started dropping rapidly. Then I was put on 100 mgs daily and it put me in remission in 3 months. All this while they were doing bone marrow checks every month. Some of my side effects are: heavy heart beat felt in chest headaches daily pain in my right side tired weak My blood pressure has gone up lately also. I am worried about PE. Hope this helps Beth. Jeanie<3 In a message dated 8/29/2012 10:49:15 A.M. Eastern Daylight Time, bkbar...@aol.com writes: Carolyn, Have you had plural efusion before? Since you have been on a low dose of sprycel for years, has this happened before to you? ARe you on a diuretic on a regular basis? I am on sprycel as well, have been for the last two years. concerned about swelling, but manage it through diuretic and potassium. just wondered what your history has been? How is your muscle fatigue on the sprycel? thanks for the info, helpful to me to talk withothers on the same meds. Beth -Original Message- From: TEDBDD To: cmlhope Sent: Tue, Aug 28, 2012 7:48 am Subject: Re: [CMLHope] Re: stopping meds. RichardI am totally with you and your decision. The longer I live with CML the more I understand that there are few "givens". Each of us reacts differently to the TKI's and we must make individual decisions. Like you, I am so grateful for these amazing drugs that have enabled us all to enjoy life in a way not possible 20 years ago. All the best in your journey. Tom in KY In a message dated 8/27/2012 11:50:47 P.M. Eastern Daylight Time, richard1huff...@comcast.net writes: Each of us need to do what is best for that person. My situation is being monitored by some of our best specialists. I have other major medical problems that are being monitored also. I have a heart issues, lung issues from three bouts with pnemonia when I was young and 40 years of smoking. Some of the newer meds are under consideration but with Gleevec's history of complications compared with the newer meds know problems to date makes me pause and ask a lot of questions about what would me right for me. I smiply post what is happening to me without recommendation what would be right in anyone else's situation. The one problem I can help address is that CML is becoming a lifetime condition and not the death sentence is used to be. We are so fortunate to have some of our members that survived until the need meds were found. They are my strength to challange CML headon in a different direction than most CML Specialists and CMLer's. Shortly after my diagnosis I discussed whith my ONC about participating in the trials of available other that Gleevec. He advised me to take Gleevec as it wasn't my time to be in trials but someday I would have my turn. I am 4 years and counting to see if my body can control CML at a low level.
Re: [CMLHope] Re: stopping meds.
HI Jeanie, thanks for sharing. I am so sorry you have had such a hard time of it. Sprycel is a very potent drug. 300X plus that of gleevec. Your side effects seem to suggest a lot of toxicity. Have you had a second opinion regarding dosage? I don't know what other's feel, but I think when we have a very hard time with the drugs, another pair of expert eyes and ears can sometimes help us. I don't know what is best for you, but 100 mgs is now the standard doseage of sprycel, it used to be much higher until their research showed that more of the drug produced serious side effects more often without any added benefits of remission. Many people take 50, or 70, 80I'm doing 40 right now...a slightly less dose seems to make a big difference in side effects in most people. The plureal effusion..risk also lessons with a lesser doseage also, just an FYI in case you may not know..., ponatinib is now available for compassionate use, it does not seem to have the same level of PE risk. Compassionate use is if you are intolerant or resistant to the three other drugs. You qualify. The drug company appears to be being quite generous with it's use right now. They have rapid access for those who need it. For all of us out there, we need to keep ourselves and each other apprised of options ...as we come to know them.. there is hopeand blessings that we have each otherand the constant research that supports more and more options...may you feel some relief from your toxicity... Peace.. Keep us posted. hug,Beth -Original Message- From: ICANDOALLTTC To: cmlhope Sent: Tue, Sep 4, 2012 2:43 pm Subject: Re: [CMLHope] Re: stopping meds. Hi Beth, I was started on Sprycel after the two other drugs, Gleevec and Tasigna just quit on me. They started me on 300 megs and my counts started dropping rapidly. Then I was put on 100 mgs daily and it put me in remission in 3 months. All this while they were doing bone marrow checks every month. Some of my side effects are: heavy heart beat felt in chest headaches daily pain in my right side tired weak My blood pressure has gone up lately also. I am worried about PE. Hope this helps Beth. Jeanie<3 In a message dated 8/29/2012 10:49:15 A.M. Eastern Daylight Time, bkbar...@aol.com writes: Carolyn, Have you had plural efusion before? Since you have been on a low dose of sprycel for years, has this happened before to you? ARe you on a diuretic on a regular basis? I am on sprycel as well, have been for the last two years. concerned about swelling, but manage it through diuretic and potassium. just wondered what your history has been? How is your muscle fatigue on the sprycel? thanks for the info, helpful to me to talk withothers on the same meds. Beth -Original Message- From: TEDBDD To: cmlhope Sent: Tue, Aug 28, 2012 7:48 am Subject: Re: [CMLHope] Re: stopping meds. RichardI am totally with you and your decision. The longer I live with CML the more I understand that there are few "givens". Each of us reacts differently to the TKI's and we must make individual decisions. Like you, I am so grateful for these amazing drugs that have enabled us all to enjoy life in a way not possible 20 years ago. All the best in your journey. Tom in KY In a message dated 8/27/2012 11:50:47 P.M. Eastern Daylight Time, richard1huff...@comcast.net writes: Each of us need to do what is best for that person. My situation is being monitored by some of our best specialists. I have other major medical problems that are being monitored also. I have a heart issues, lung issues from three bouts with pnemonia when I was young and 40 years of smoking. Some of the newer meds are under consideration but with Gleevec's history of complications compared with the newer meds know problems to date makes me pause and ask a lot of questions about what would me right for me. I smiply post what is happening to me without recommendation what would be right in anyone else's situation. The one problem I can help address is that CML is becoming a lifetime condition and not the death sentence is used to be. We are so fortunate to have some of our members that survived until the need meds were found. They are my strength to challange CML headon in a different direction than most CML Specialists and CMLer's. Shortly after my diagnosis I discussed whith my ONC about participating in the trials of available other that Gleevec. He advised me to take Gleevec as it wasn't my time to be in trials but someday I would have my turn. I am 4 years and counting to see if my body can control CML at a low level. That in itself is a miracle considing when you consider I was given a 5 - 10 year lifespan and now I will die of something else. Life, Richard H. On Monday, August 27, 2012 3:49:53 PM UTC-5, jku...@wi.rr.com wrote: Hi CML Group. I haven't posted in a long time but the laste
Re: [CMLHope] Re: stopping meds.
Hi Beth, I was started on Sprycel after the two other drugs, Gleevec and Tasigna just quit on me. They started me on 300 megs and my counts started dropping rapidly. Then I was put on 100 mgs daily and it put me in remission in 3 months. All this while they were doing bone marrow checks every month. Some of my side effects are: heavy heart beat felt in chest headaches daily pain in my right side tired weak My blood pressure has gone up lately also. I am worried about PE. Hope this helps Beth. Jeanie<3 In a message dated 8/29/2012 10:49:15 A.M. Eastern Daylight Time, bkbar...@aol.com writes: Carolyn, Have you had plural efusion before? Since you have been on a low dose of sprycel for years, has this happened before to you? ARe you on a diuretic on a regular basis? I am on sprycel as well, have been for the last two years. concerned about swelling, but manage it through diuretic and potassium. just wondered what your history has been? How is your muscle fatigue on the sprycel? thanks for the info, helpful to me to talk withothers on the same meds. Beth -Original Message- From: TEDBDD To: cmlhope Sent: Tue, Aug 28, 2012 7:48 am Subject: Re: [CMLHope] Re: stopping meds. RichardI am totally with you and your decision. The longer I live with CML the more I understand that there are few "givens". Each of us reacts differently to the TKI's and we must make individual decisions. Like you, I am so grateful for these amazing drugs that have enabled us all to enjoy life in a way not possible 20 years ago. All the best in your journey. Tom in KY In a message dated 8/27/2012 11:50:47 P.M. Eastern Daylight Time, richard1huff...@comcast.net writes: Each of us need to do what is best for that person. My situation is being monitored by some of our best specialists. I have other major medical problems that are being monitored also. I have a heart issues, lung issues from three bouts with pnemonia when I was young and 40 years of smoking. Some of the newer meds are under consideration but with Gleevec's history of complications compared with the newer meds know problems to date makes me pause and ask a lot of questions about what would me right for me. I smiply post what is happening to me without recommendation what would be right in anyone else's situation. The one problem I can help address is that CML is becoming a lifetime condition and not the death sentence is used to be. We are so fortunate to have some of our members that survived until the need meds were found. They are my strength to challange CML headon in a different direction than most CML Specialists and CMLer's. Shortly after my diagnosis I discussed whith my ONC about participating in the trials of available other that Gleevec. He advised me to take Gleevec as it wasn't my time to be in trials but someday I would have my turn. I am 4 years and counting to see if my body can control CML at a low level. That in itself is a miracle considing when you consider I was given a 5 - 10 year lifespan and now I will die of something else. Life, Richard H. On Monday, August 27, 2012 3:49:53 PM UTC-5, jku...@wi.rr.com wrote: Hi CML Group. I haven't posted in a long time but the lastest post about not taking meds interested me. I have been on Sprycel 20mg bid for about 5 years. My onocologist checks pcr levels and also a fish test every three months. 9 times out of ten the CML is undectable but every once in awhile there is a very minute count. It tells me that the CML is just under the surface. I recently had to have a liter of fluid taken out of the plura around the lung from the sprycel. My onocologist told me whatever I do don't stop taking the meds. I assured him I would follow his directions to the "T" as I feel without these miracle drugs this would be a death sentence. That is why I was amazed that Drs. are recommending stopping the therapy. Maybe my onocologist is just being cautious. Carolyn Kuptz -- [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.g
Re: [CMLHope] Re: stopping meds.
Great story Richard and such an inspiration to all. Blessings, Jeanie<3 In a message dated 8/27/2012 11:50:45 P.M. Eastern Daylight Time, richard1huff...@comcast.net writes: Each of us need to do what is best for that person. My situation is being monitored by some of our best specialists. I have other major medical problems that are being monitored also. I have a heart issues, lung issues from three bouts with pnemonia when I was young and 40 years of smoking. Some of the newer meds are under consideration but with Gleevec's history of complications compared with the newer meds know problems to date makes me pause and ask a lot of questions about what would me right for me. I smiply post what is happening to me without recommendation what would be right in anyone else's situation. The one problem I can help address is that CML is becoming a lifetime condition and not the death sentence is used to be. We are so fortunate to have some of our members that survived until the need meds were found. They are my strength to challange CML headon in a different direction than most CML Specialists and CMLer's. Shortly after my diagnosis I discussed whith my ONC about participating in the trials of available other that Gleevec. He advised me to take Gleevec as it wasn't my time to be in trials but someday I would have my turn. I am 4 years and counting to see if my body can control CML at a low level. That in itself is a miracle considing when you consider I was given a 5 - 10 year lifespan and now I will die of something else. Life, Richard H. On Monday, August 27, 2012 3:49:53 PM UTC-5, jku...@wi.rr.com wrote: Hi CML Group. I haven't posted in a long time but the lastest post about not taking meds interested me. I have been on Sprycel 20mg bid for about 5 years. My onocologist checks pcr levels and also a fish test every three months. 9 times out of ten the CML is undectable but every once in awhile there is a very minute count. It tells me that the CML is just under the surface. I recently had to have a liter of fluid taken out of the plura around the lung from the sprycel. My onocologist told me whatever I do don't stop taking the meds. I assured him I would follow his directions to the "T" as I feel without these miracle drugs this would be a death sentence. That is why I was amazed that Drs. are recommending stopping the therapy. Maybe my onocologist is just being cautious. Carolyn Kuptz -- [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: stopping meds.
Carolyn, Have you had plural efusion before? Since you have been on a low dose of sprycel for years, has this happened before to you? ARe you on a diuretic on a regular basis? I am on sprycel as well, have been for the last two years. concerned about swelling, but manage it through diuretic and potassium. just wondered what your history has been? How is your muscle fatigue on the sprycel? thanks for the info, helpful to me to talk withothers on the same meds. Beth -Original Message- From: TEDBDD To: cmlhope Sent: Tue, Aug 28, 2012 7:48 am Subject: Re: [CMLHope] Re: stopping meds. RichardI am totally with you and your decision. The longer I live with CML the more I understand that there are few "givens". Each of us reacts differently to the TKI's and we must make individual decisions. Like you, I am so grateful for these amazing drugs that have enabled us all to enjoy life in a way not possible 20 years ago. All the best in your journey. Tom in KY In a message dated 8/27/2012 11:50:47 P.M. Eastern Daylight Time, richard1huff...@comcast.net writes: Each of us need to do what is best for that person. My situation is being monitored by some of our best specialists. I have other major medical problems that are being monitored also. I have a heart issues, lung issues from three bouts with pnemonia when I was young and 40 years of smoking. Some of the newer meds are under consideration but with Gleevec's history of complications compared with the newer meds know problems to date makes me pause and ask a lot of questions about what would me right for me. I smiply post what is happening to me without recommendation what would be right in anyone else's situation. The one problem I can help address is that CML is becoming a lifetime condition and not the death sentence is used to be. We are so fortunate to have some of our members that survived until the need meds were found. They are my strength to challange CML headon in a different direction than most CML Specialists and CMLer's. Shortly after my diagnosis I discussed whith my ONC about participating in the trials of available other that Gleevec. He advised me to take Gleevec as it wasn't my time to be in trials but someday I would have my turn. I am 4 years and counting to see if my body can control CML at a low level. That in itself is a miracle considing when you consider I was given a 5 - 10 year lifespan and now I will die of something else. Life, Richard H. On Monday, August 27, 2012 3:49:53 PM UTC-5, jku...@wi.rr.com wrote: Hi CML Group. I haven't posted in a long time but the lastest post about not taking meds interested me. I have been on Sprycel 20mg bid for about 5 years. My onocologist checks pcr levels and also a fish test every three months. 9 times out of ten the CML is undectable but every once in awhile there is a very minute count. It tells me that the CML is just under the surface. I recently had to have a liter of fluid taken out of the plura around the lung from the sprycel. My onocologist told me whatever I do don't stop taking the meds. I assured him I would follow his directions to the "T" as I feel without these miracle drugs this would be a death sentence. That is why I was amazed that Drs. are recommending stopping the therapy. Maybe my onocologist is just being cautious. Carolyn Kuptz -- [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: stopping meds.
HI Richard, I found out that I had CML two weeks before Xmas of 1998. Went on Interferon for 3 months, that almost killed me. After that about 2 to 3 month later Chicago called me and put me into a study at Northwestern. STI571. Their were 8 of us from the Chicago area, I was the only one from Indiana. That was Jan. 9, 2000. Started at 400mg then received the Gleevec rash so they dropped me to 300 mg and been on that all these years. Can't complain their are more good days then bad. All drugs have their problems but I doing O.K. greenie In a message dated 8/28/2012 11:31:28 P.M. Eastern Daylight Time, richard1huff...@comcast.net writes: Yes, we will all eventually die. You, Lottie, and Skip were the first names that I thought of when I was writing but didn't want to miss any one that around before 2/2003. I am fortunate to have some footprints in the sand to follow and voices to keep me keeping on. Richard H. On Tuesday, August 28, 2012 8:09:24 AM UTC-5, wa2yyx wrote: Yes indeed Richard, You stated that since all of these TKI's have been around that "I will die of something else". You must remember that everyone who is born will eventually have to die. So it is good to know that CML will not be your undoing. I am one of those members that you spoke about. I had a bone marrow transplant more then 23 years ago, way before any of these TKI's were around. I guess that it wasn't my time yet. Also take a look at Skip, he is still alive after 35+ years. If you want to talk about strength to challenge CML head on, then take a look at Skip. Another long time person is Lottie. She really has been through the mill, trial after trial and is still here with us. With all of these advancements the CML community has stricken a blow to CML, and this will continue to happen. Maybe not in my lifetime but the disease CML will cease to exist, just like Polio was at one time. 18's Richard (Symbol for life) Marty On Mon, Aug 27, 2012 at 11:50 PM, Richard H <_richard...@comcast.net_ (javascript:) > wrote: Each of us need to do what is best for that person. My situation is being monitored by some of our best specialists. I have other major medical problems that are being monitored also. I have a heart issues, lung issues from three bouts with pnemonia when I was young and 40 years of smoking. Some of the newer meds are under consideration but with Gleevec's history of complications compared with the newer meds know problems to date makes me pause and ask a lot of questions about what would me right for me. I smiply post what is happening to me without recommendation what would be right in anyone else's situation. The one problem I can help address is that CML is becoming a lifetime condition and not the death sentence is used to be. We are so fortunate to have some of our members that survived until the need meds were found. They are my strength to challange CML headon in a different direction than most CML Specialists and CMLer's. Shortly after my diagnosis I discussed whith my ONC about participating in the trials of available other that Gleevec. He advised me to take Gleevec as it wasn't my time to be in trials but someday I would have my turn. I am 4 years and counting to see if my body can control CML at a low level. That in itself is a miracle considing when you consider I was given a 5 - 10 year lifespan and now I will die of something else. Life, Richard H. On Monday, August 27, 2012 3:49:53 PM UTC-5, jku...@wi.rr.com wrote: Hi CML Group. I haven't posted in a long time but the lastest post about not taking meds interested me. I have been on Sprycel 20mg bid for about 5 years. My onocologist checks pcr levels and also a fish test every three months. 9 times out of ten the CML is undectable but every once in awhile there is a very minute count. It tells me that the CML is just under the surface. I recently had to have a liter of fluid taken out of the plura around the lung from the sprycel. My onocologist told me whatever I do don't stop taking the meds. I assured him I would follow his directions to the "T" as I feel without these miracle drugs this would be a death sentence. That is why I was amazed that Drs. are recommending stopping the therapy. Maybe my onocologist is just being cautious. Carolyn Kuptz -- [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 _CML...@googlegroups.com_ (javascript:) To unsubscribe from this group, send email to _CMLHope-u...@CMLHope-u...@http://groups.google.com/http://groups_ (http://groups.google.com/group/CMLHope) -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ---
Re: [CMLHope] Re: stopping meds.
Yes, we will all eventually die. You, Lottie, and Skip were the first names that I thought of when I was writing but didn't want to miss any one that around before 2/2003. I am fortunate to have some footprints in the sand to follow and voices to keep me keeping on. Richard H. On Tuesday, August 28, 2012 8:09:24 AM UTC-5, wa2yyx wrote: > Yes indeed Richard, > > You stated that since all of these TKI's have been around that "I will die > of something else". You must remember that everyone who is born will > eventually have to die. So it is good to know that CML will not be your > undoing. > > I am one of those members that you spoke about. I had a bone marrow > transplant more then 23 years ago, way before any of these TKI's were > around. I guess that it wasn't my time yet. Also take a look at Skip, he is > still alive after 35+ years. If you want to talk about strength to > challenge CML head on, then take a look at Skip. > > Another long time person is Lottie. She really has been through the mill, > trial after trial and is still here with us. With all of these advancements > the CML community has stricken a blow to CML, and this will continue to > happen. Maybe not in my lifetime but the disease CML will cease to exist, > just like Polio was at one time. > > 18's Richard (Symbol for life) > > Marty > > On Mon, Aug 27, 2012 at 11:50 PM, Richard H > > > wrote: > >> Each of us need to do what is best for that person. My situation is >> being monitored by some of our best specialists. I have other major >> medical problems that are being monitored also. I have a heart issues, >> lung issues from three bouts with pnemonia when I was young and 40 years of >> smoking. Some of the newer meds are under consideration but with Gleevec's >> history of complications compared with the newer meds know problems to date >> makes me pause and ask a lot of questions about what would me right for >> me. I smiply post what is happening to me without recommendation what >> would be right in anyone else's situation. The one problem I can help >> address is that CML is becoming a lifetime condition and not the death >> sentence is used to be. We are so fortunate to have some of our members >> that survived until the need meds were found. They are my strength to >> challange CML headon in a different direction than most CML Specialists and >> CMLer's. Shortly after my diagnosis I discussed whith my ONC about >> participating in the trials of available other that Gleevec. He advised me >> to take Gleevec as it wasn't my time to be in trials but someday I would >> have my turn. I am 4 years and counting to see if my body can control CML >> at a low level. That in itself is a miracle considing when you consider I >> was given a 5 - 10 year lifespan and now I will die of something else. >> >> Life, >> Richard H. >> >> On Monday, August 27, 2012 3:49:53 PM UTC-5, jku...@wi.rr.com wrote: >> >>> Hi CML Group. >>> >>> I haven't posted in a long time but the lastest post about not taking >>> meds interested me. I have been on Sprycel 20mg bid for about >>> 5 years. My onocologist checks pcr levels and also a fish test every >>> three months. 9 times out of ten the CML is undectable but every once in >>> awhile there is a very minute count. It tells me that the CML is just >>> under the surface. I recently had to have a liter of fluid taken out of >>> the plura around the lung from the sprycel. My onocologist told me >>> whatever I do don't stop taking the meds. I assured him I would follow his >>> directions to the "T" as I feel without these miracle drugs this would be a >>> death sentence. That is why I was amazed that Drs. are recommending >>> stopping the therapy. Maybe my onocologist is just being cautious. >>> Carolyn Kuptz >>> >>> -- >> [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 cml...@googlegroups.com >> To unsubscribe from this group, send email to >> cmlhope-u...@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: stopping meds.
Yes indeed Richard, You stated that since all of these TKI's have been around that "I will die of something else". You must remember that everyone who is born will eventually have to die. So it is good to know that CML will not be your undoing. I am one of those members that you spoke about. I had a bone marrow transplant more then 23 years ago, way before any of these TKI's were around. I guess that it wasn't my time yet. Also take a look at Skip, he is still alive after 35+ years. If you want to talk about strength to challenge CML head on, then take a look at Skip. Another long time person is Lottie. She really has been through the mill, trial after trial and is still here with us. With all of these advancements the CML community has stricken a blow to CML, and this will continue to happen. Maybe not in my lifetime but the disease CML will cease to exist, just like Polio was at one time. 18's Richard (Symbol for life) Marty On Mon, Aug 27, 2012 at 11:50 PM, Richard H wrote: > Each of us need to do what is best for that person. My situation is being > monitored by some of our best specialists. I have other major medical > problems that are being monitored also. I have a heart issues, lung issues > from three bouts with pnemonia when I was young and 40 years of smoking. > Some of the newer meds are under consideration but with Gleevec's history > of complications compared with the newer meds know problems to date makes > me pause and ask a lot of questions about what would me right for me. I > smiply post what is happening to me without recommendation what would be > right in anyone else's situation. The one problem I can help address is > that CML is becoming a lifetime condition and not the death sentence is > used to be. We are so fortunate to have some of our members that survived > until the need meds were found. They are my strength to challange CML > headon in a different direction than most CML Specialists and CMLer's. > Shortly after my diagnosis I discussed whith my ONC about participating in > the trials of available other that Gleevec. He advised me to take Gleevec > as it wasn't my time to be in trials but someday I would have my turn. I > am 4 years and counting to see if my body can control CML at a low level. > That in itself is a miracle considing when you consider I was given a 5 - > 10 year lifespan and now I will die of something else. > > Life, > Richard H. > > On Monday, August 27, 2012 3:49:53 PM UTC-5, jku...@wi.rr.com wrote: > >> Hi CML Group. >> >> I haven't posted in a long time but the lastest post about not taking >> meds interested me. I have been on Sprycel 20mg bid for about >> 5 years. My onocologist checks pcr levels and also a fish test every >> three months. 9 times out of ten the CML is undectable but every once in >> awhile there is a very minute count. It tells me that the CML is just >> under the surface. I recently had to have a liter of fluid taken out of >> the plura around the lung from the sprycel. My onocologist told me >> whatever I do don't stop taking the meds. I assured him I would follow his >> directions to the "T" as I feel without these miracle drugs this would be a >> death sentence. That is why I was amazed that Drs. are recommending >> stopping the therapy. Maybe my onocologist is just being cautious. >> Carolyn Kuptz >> >> -- > [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: stopping meds.
RichardI am totally with you and your decision. The longer I live with CML the more I understand that there are few "givens". Each of us reacts differently to the TKI's and we must make individual decisions. Like you, I am so grateful for these amazing drugs that have enabled us all to enjoy life in a way not possible 20 years ago. All the best in your journey. Tom in KY In a message dated 8/27/2012 11:50:47 P.M. Eastern Daylight Time, richard1huff...@comcast.net writes: Each of us need to do what is best for that person. My situation is being monitored by some of our best specialists. I have other major medical problems that are being monitored also. I have a heart issues, lung issues from three bouts with pnemonia when I was young and 40 years of smoking. Some of the newer meds are under consideration but with Gleevec's history of complications compared with the newer meds know problems to date makes me pause and ask a lot of questions about what would me right for me. I smiply post what is happening to me without recommendation what would be right in anyone else's situation. The one problem I can help address is that CML is becoming a lifetime condition and not the death sentence is used to be. We are so fortunate to have some of our members that survived until the need meds were found. They are my strength to challange CML headon in a different direction than most CML Specialists and CMLer's. Shortly after my diagnosis I discussed whith my ONC about participating in the trials of available other that Gleevec. He advised me to take Gleevec as it wasn't my time to be in trials but someday I would have my turn. I am 4 years and counting to see if my body can control CML at a low level. That in itself is a miracle considing when you consider I was given a 5 - 10 year lifespan and now I will die of something else. Life, Richard H. On Monday, August 27, 2012 3:49:53 PM UTC-5, jku...@wi.rr.com wrote: Hi CML Group. I haven't posted in a long time but the lastest post about not taking meds interested me. I have been on Sprycel 20mg bid for about 5 years. My onocologist checks pcr levels and also a fish test every three months. 9 times out of ten the CML is undectable but every once in awhile there is a very minute count. It tells me that the CML is just under the surface. I recently had to have a liter of fluid taken out of the plura around the lung from the sprycel. My onocologist told me whatever I do don't stop taking the meds. I assured him I would follow his directions to the "T" as I feel without these miracle drugs this would be a death sentence. That is why I was amazed that Drs. are recommending stopping the therapy. Maybe my onocologist is just being cautious. Carolyn Kuptz -- [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
[CMLHope] Re: stopping meds.
Each of us need to do what is best for that person. My situation is being monitored by some of our best specialists. I have other major medical problems that are being monitored also. I have a heart issues, lung issues from three bouts with pnemonia when I was young and 40 years of smoking. Some of the newer meds are under consideration but with Gleevec's history of complications compared with the newer meds know problems to date makes me pause and ask a lot of questions about what would me right for me. I smiply post what is happening to me without recommendation what would be right in anyone else's situation. The one problem I can help address is that CML is becoming a lifetime condition and not the death sentence is used to be. We are so fortunate to have some of our members that survived until the need meds were found. They are my strength to challange CML headon in a different direction than most CML Specialists and CMLer's. Shortly after my diagnosis I discussed whith my ONC about participating in the trials of available other that Gleevec. He advised me to take Gleevec as it wasn't my time to be in trials but someday I would have my turn. I am 4 years and counting to see if my body can control CML at a low level. That in itself is a miracle considing when you consider I was given a 5 - 10 year lifespan and now I will die of something else. Life, Richard H. On Monday, August 27, 2012 3:49:53 PM UTC-5, jku...@wi.rr.com wrote: > Hi CML Group. > > I haven't posted in a long time but the lastest post about not taking meds > interested me. I have been on Sprycel 20mg bid for about > 5 years. My onocologist checks pcr levels and also a fish test every > three months. 9 times out of ten the CML is undectable but every once in > awhile there is a very minute count. It tells me that the CML is just > under the surface. I recently had to have a liter of fluid taken out of > the plura around the lung from the sprycel. My onocologist told me > whatever I do don't stop taking the meds. I assured him I would follow his > directions to the "T" as I feel without these miracle drugs this would be a > death sentence. That is why I was amazed that Drs. are recommending > stopping the therapy. Maybe my onocologist is just being cautious. > Carolyn Kuptz > > -- [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
