Dear marcie, I am hoping that your weak positive is just a momentary thing...our blood work fluctuates all the time and can go back to undectable..or stay at very low levels without problem.....I will keep my fingers crossed for you. I know how much these numbers affect us. Stay positive!
warm regards, Beth -----Original Message----- From: Kristin Lieberman <[email protected]> To: cmlhope <[email protected]> Sent: Sat, Oct 11, 2014 11:50 am Subject: Re: [CMLHope] Digest for [email protected] - 8 updates in 2 topics Beth, I will be seeing Dr. Druker on October 23rd. Maybe we could meet for coffee? Kristin Sent from my iPad On Oct 11, 2014, at 3:14 AM, [email protected] wrote: [email protected] Google Groups Topic digest View all topics New Results - 3 Updates Sprycel side effects Beth - 5 Updates New Results Marcie Goodman <[email protected]>: Oct 10 06:25PM -0400 Hi Friends, Just got my 3 month bcr-abl results. After 6 months of undetected, this test came back as "weak positive." Not much in terms of amount but I'm bummed that I didn't remain undetected. So I'm wondering if anyone else has received a "weak positive". I'm not really worried because I'll be tested again in December but it sure would be great to be in complete response again. Marcie Sent from my iPad. Susan Zimmerman <[email protected]>: Oct 10 10:59PM -0400 Dear Marcie and friends, So sorry to hear about the slight detection in your numbers. Remember I lived 7 years and two months with no medicine and my numbers got as high as 23.0....with very little problems with that. I know everyone is really different in reactions. This does not mean you won't continue to use gleevec, just a slight bump in the road. I hope your cramping has gone away? Prayers to all, 18's, Susan -----Original Message----- From: 'Marcie Goodman' via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Fri, Oct 10, 2014 6:30 pm Subject: [CMLHope] New Results Hi Friends, De Just got my 3 month bcr-abl results. After 6 months of undetected, this test came back as "weak positive." Not much in terms of amount but I'm bummed that I didn't remain undetected. So I'm wondering if anyone else has received a "weak positive". I'm not really worried because I'll be tested again in December but it sure would be great to be in complete response again. Marcie Sent from my iPad. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout. Richard H <[email protected]>: Oct 10 09:22PM -0700 Hi Marcie. Yes, I had low or negative counts for the first 5 years, It has been slowly and steadily rising the last year. Monday I see my ONC to see get my latest results. Since his group joined the new KU Regional Cancer Center. I may not have my printed copies for a week. You know things are always changing, in July the center installed anew computer system and everyone is having their problems learning the system.. Hope my info is helpful. Richard H. On Friday, October 10, 2014 5:30:16 PM UTC-5, caselmar wrote: Back to top Sprycel side effects Beth Peter <[email protected]>: Oct 10 03:20AM -0700 Hi Beth. I developed insomnia soon after I started Tasigna about two years ago. For me the answer was 0.5mg Lorazepam (Ativan) before bed time. If you haven't tried this already, it may be worth a shot. Peter On Friday, October 10, 2014 12:15:01 AM UTC-4, Beth wrote: Marty Gartenberg <[email protected]>: Oct 10 07:36AM -0400 Hi Beth, I'm glad to hear your doing relatively well. When you see Dr. Druker ask him if Melatonin could be of help to your sleeping problems. I had the exact problem and still have it but it has gotten a lot better since I started using *Melatonin. It got so bad at times that I would stay up the whole night no matter what I did. Sometimes for several days. That was until I went to my lung doctor for my annual check-up. She asked me how old was my mattress. It was over fourteen years old and she mentioned that there could be a lot of dust mites (ugg) in my mattress even though my house is spotless, and that could be one of the reasons I was being kept up at night. When I thought about it I remembered that sometimes I would fall asleep on the couch in my family room watching TV so it kind of made sense to me. So, I took her advice and went out and bought a new mattress. Finally I was able to get a fairly good night's sleep but my body had to adjust it's sleep pattern and that took a few weeks. *Melatonin 10 mg is a nighttime sleep aid. I usually buy it from Puritan's Pride. http://www.puritan.com/night-products-007/melatonin-10-mg-019491 Be sure to read the last paragraph it explains about how it works. I hope that it will help you if Dr Druker says it is alright for you to use it. 18's, Marty On Fri, Oct 10, 2014 at 12:14 AM, bkbarney via CMLHope < [email protected]: Oct 10 07:40AM -0400 Hi Beth, Go to Drugs.com and check out Promethazine 25 mg. I was using the drug for nausea but it all so works if you have a problem sleeping. Check with you Doctor first and go to Drugs.com and look it up for what it can be use for. I cut mine in haft because taking the 25mg. knots me out. Greenie In a message dated 10/10/2014 12:15:01 A.M. Eastern Daylight Time, [email protected] writes: Hi Jeannie. I hope your pain gets better..Glad you too do well otherwise..with the sprycel. I also want to say hi to Marty and just letting you know that I am continuing to pray for you daily for a transplant to come through. Your home in Penn. is beautiful..so peaceful...hope you and your sweetie can get back there post successful transplant. fingers crossed.. A question I have for the group. I am struggling with really really bad insomnia. I don't know the causes..probably multi factorial but whatever it is..it's putting great stress on my body and I just cannot get good rest..which, as we all know affects everything else negatively. Do any of you know something I could try that would not be contra indicated with the sprycel that might help? I have tried the usual suspects..to no avail. Seeing Dr. Druker two weeks from today...see how close we all are to a cure.......:) always hoping... Goign to Wash U in November to a neuro muscular specialist to try and define what is going on with my muscle loss, elevated CPK, and other pieces that test positive in my blood and muscle biopsy. I have yet to know anyone who has these issues...so hopefully it's not the sprycel..but a concurrent thing that has come up that can finally be diagnosed successfully so it can be treated..so I can get stronger...this will also help my spine and neck to heal post surgeries...hard to heal when you are always deteriorating- burning muscle.. Saying positve and counting my blessings each and every day.. just thought I would report in ...the warm water PT is my saving grace..feel so much better in there... three times a week...working part time....old pooch Gracie now 15.5 lost her hearing int he last few months...still plugging along..great role model..hs lots of health stuff...older age mostly...but wants to walk and play and snooze every day..still eats well..and loves her treats.....I love her so. love and prayers to all my colleagues and friends here...too many names to list by now!!!! Beth -----Original Message----- From: ICANDOALLTTC via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Thu, Oct 9, 2014 5:54 am Subject: Re: [CMLHope] Re: Sprycel side effects Beth Hi Beth and so glad to hear from you and that you are doing well. It is good to hear that you are still on Sprycel and doing good. I am on 100 mgs daily and so far, no PE. Blessings and keep fighting! Jeanie<3 In a message dated 9/21/2014 11:17:31 P.M. Eastern Daylight Time, [email protected]_ (mailto:[email protected]) writes: HI all. Just wanted to offer my experiece to the mix. I have been on sprycel for 4 years in November, with some breaks for back/neck surgeries unrelated. In the beginning, I did get very mild PE which showed up on a chest xray that was done as a pre-surgery clearance test. It was not major. My doc did but me on furosimide 20 mgs plus potassium daily..and stated I needed to stay ahead of any possible swelling side effects if possible. I eat a low sodium diet and take this med religiously in the a.m....sprycel before bedtime. I am blessed to have no further issues with any PE for the last 3.5 years. So, in my experience, I believe a daily diuretic with the sprycel has truly helped me. I am also on a low dose which maintains me at barely detectable to undetectable......40 mgs. I am truly blessed. Hope all is well with everyone. I miss you all. Still navigating back issues so not on line much at all these days...but keep everyone in my thoughts and prayers. My CML is in good control and I count my blessings....including all of you...take good care. warm regards, a 18 s.....to all of you.... ( marty still prayng for a transplant..for you..) Beth -----Original Message----- From: LearnToBallroomDanceOnline.com <[email protected]_ (mailto:[email protected]) > To: cmlhope <[email protected]_ (mailto:[email protected]) >; pkshaub <[email protected]_ (mailto:[email protected]) > Sent: Fri, Sep 19, 2014 11:23 am Subject: Re: [CMLHope] Re: Sprycel side effects Hi Peter, While it is true that many develop PE while on Sprycel; the upside is that the PE often coincides with PCRU! And unfortunately diuretics do not reduce the fluid that actually is in the sac that surrounds your lungs. For me it usually takes a break from Sprycel; I know that many people avoid Sprycel because of this risk, but to me, the risk of pleural effusion is less of a risk that the ones that come with Tasigna's Black Box Warning. My PE's have been more of an inconvenience at this point and fortunately clear quickly. Best to you all, Michele On Fri, Sep 19, 2014 at 4:54 AM, Peter <[email protected]_ (mailto:[email protected]) > wrote: >From what I have read here and elsewhere, it seems to me that Sprycel will definitely cause PE, it is only a question of WHEN, not IF. For this reason, I have avoided this drug like the plague. Currently, Tasigna is keeping at a 3.2 log reduction, which is a sub-optimal response. My doctor keeps telling me, that PE is "easily controlled with diuretics". However, I have not heard this from anybody else. Does anyone here know anything about the use of diuretics to control PE? Peter On Monday, September 8, 2014 11:33:33 PM UTC-4, grammie wrote: Have been reading the reports of various CMLers having side effects from the various TKIs. Jut wanted to weigh in with my husband's latest experiences. He was short-winded and family doc ordered a chest X-ray which revealed some effusion. We reported this to Dr Talpaz (his CML specialist) and Dr T wanted him to have an echogram which we were able to do locally with his regular cardiologist. Dr T said to quit taking Sprycel immediately and not to continue until he and the cardio conferred. As of now, he will have another echo in a week to see if there is any change one way or the other. He has an appointment with Dr Talpaz in Michigan the middle of October and it sounds like they are going to have him stay off Sprycel until at least then. It's kind of scary being off the medication that you know is saving your life. But Dr T is not concerned. Don't know where this is going next. All part of the journey. Continue to pray for all the warriors out there. Thank you for your input. Joyce in IL -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at http://groups.google.com/group/CMLHope --- 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 [email protected]_ (mailto:[email protected]) . For more options, visit https://groups.google.com/d/optout. -- [email protected]_ (mailto:[email protected]) _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 [email protected]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at http://groups.google.com/group/CMLHope --- 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 [email protected]_ (mailto:[email protected]) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at http://groups.google.com/group/CMLHope --- 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 [email protected]_ (mailto:cmlhope+unsubscr [email protected]) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at http://groups.google.com/group/CMLHope --- 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 [email protected]_ (mailto:[email protected]) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]_ (mailto:[email protected]) . For more options, visit https://groups.google.com/d/optout. [email protected]: Oct 10 07:48AM -0400 Hi Beth, Darn, I forgot to use spell check (that's Knocks me out). Dam, getting old is a pain all of the problems we had when we were younger go away and as we get older we get new ones. Greenie In a message dated 10/10/2014 7:40:18 A.M. Eastern Daylight Time, [email protected] writes: Hi Beth, Go to Drugs.com and check out Promethazine 25 mg. I was using the drug for nausea but it all so works if you have a problem sleeping. Check with you Doctor first and go to Drugs.com and look it up for what it can be use for. I cut mine in haft because taking the 25mg. knots me out. Greenie In a message dated 10/10/2014 12:15:01 A.M. Eastern Daylight Time, [email protected] writes: Hi Jeannie. I hope your pain gets better..Glad you too do well otherwise..with the sprycel. I also want to say hi to Marty and just letting you know that I am continuing to pray for you daily for a transplant to come through. Your home in Penn. is beautiful..so peaceful...hope you and your sweetie can get back there post successful transplant. fingers crossed.. A question I have for the group. I am struggling with really really bad insomnia. I don't know the causes..probably multi factorial but whatever it is..it's putting great stress on my body and I just cannot get good rest..which, as we all know affects everything else negatively. Do any of you know something I could try that would not be contra indicated with the sprycel that might help? I have tried the usual suspects..to no avail. Seeing Dr. Druker two weeks from today...see how close we all are to a cure.......:) always hoping... Goign to Wash U in November to a neuro muscular specialist to try and define what is going on with my muscle loss, elevated CPK, and other pieces that test positive in my blood and muscle biopsy. I have yet to know anyone who has these issues...so hopefully it's not the sprycel..but a concurrent thing that has come up that can finally be diagnosed successfully so it can be treated..so I can get stronger...this will also help my spine and neck to heal post surgeries...hard to heal when you are always deteriorating- burning muscle.. Saying positve and counting my blessings each and every day.. just thought I would report in ...the warm water PT is my saving grace..feel so much better in there... three times a week...working part time....old pooch Gracie now 15.5 lost her hearing int he last few months...still plugging along..great role model..hs lots of health stuff...older age mostly...but wants to walk and play and snooze every day..still eats well..and loves her treats.....I love her so. love and prayers to all my colleagues and friends here...too many names to list by now!!!! Beth -----Original Message----- From: ICANDOALLTTC via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Thu, Oct 9, 2014 5:54 am Subject: Re: [CMLHope] Re: Sprycel side effects Beth Hi Beth and so glad to hear from you and that you are doing well. It is good to hear that you are still on Sprycel and doing good. I am on 100 mgs daily and so far, no PE. Blessings and keep fighting! Jeanie<3 In a message dated 9/21/2014 11:17:31 P.M. Eastern Daylight Time, [email protected]_ (mailto:[email protected]) writes: HI all. Just wanted to offer my experiece to the mix. I have been on sprycel for 4 years in November, with some breaks for back/neck surgeries unrelated. In the beginning, I did get very mild PE which showed up on a chest xray that was done as a pre-surgery clearance test. It was not major. My doc did but me on furosimide 20 mgs plus potassium daily..and stated I needed to stay ahead of any possible swelling side effects if possible. I eat a low sodium diet and take this med religiously in the a.m....sprycel before bedtime. I am blessed to have no further issues with any PE for the last 3.5 years. So, in my experience, I believe a daily diuretic with the sprycel has truly helped me. I am also on a low dose which maintains me at barely detectable to undetectable......40 mgs. I am truly blessed. Hope all is well with everyone. I miss you all. Still navigating back issues so not on line much at all these days...but keep everyone in my thoughts and prayers. My CML is in good control and I count my blessings....including all of you...take good care. warm regards, a 18 s.....to all of you.... ( marty still prayng for a transplant..for you..) Beth -----Original Message----- From: LearnToBallroomDanceOnline.com <[email protected]_ (mailto:[email protected]) > To: cmlhope <[email protected]_ (mailto:[email protected]) >; pkshaub <[email protected]_ (mailto:[email protected]) > Sent: Fri, Sep 19, 2014 11:23 am Subject: Re: [CMLHope] Re: Sprycel side effects Hi Peter, While it is true that many develop PE while on Sprycel; the upside is that the PE often coincides with PCRU! And unfortunately diuretics do not reduce the fluid that actually is in the sac that surrounds your lungs. For me it usually takes a break from Sprycel; I know that many people avoid Sprycel because of this risk, but to me, the risk of pleural effusion is less of a risk that the ones that come with Tasigna's Black Box Warning. My PE's have been more of an inconvenience at this point and fortunately clear quickly. Best to you all, Michele On Fri, Sep 19, 2014 at 4:54 AM, Peter <[email protected]_ (mailto:[email protected]) > wrote: >From what I have read here and elsewhere, it seems to me that Sprycel will definitely cause PE, it is only a question of WHEN, not IF. For this reason, I have avoided this drug like the plague. Currently, Tasigna is keeping at a 3.2 log reduction, which is a sub-optimal response. My doctor keeps telling me, that PE is "easily controlled with diuretics". However, I have not heard this from anybody else. Does anyone here know anything about the use of diuretics to control PE? Peter On Monday, September 8, 2014 11:33:33 PM UTC-4, grammie wrote: Have been reading the reports of various CMLers having side effects from the various TKIs. Jut wanted to weigh in with my husband's latest experiences. He was short-winded and family doc ordered a chest X-ray which revealed some effusion. We reported this to Dr Talpaz (his CML specialist) and Dr T wanted him to have an echogram which we were able to do locally with his regular cardiologist. Dr T said to quit taking Sprycel immediately and not to continue until he and the cardio conferred. As of now, he will have another echo in a week to see if there is any change one way or the other. He has an appointment with Dr Talpaz in Michigan the middle of October and it sounds like they are going to have him stay off Sprycel until at least then. It's kind of scary being off the medication that you know is saving your life. But Dr T is not concerned. Don't know where this is going next. All part of the journey. Continue to pray for all the warriors out there. Thank you for your input. Joyce in IL -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at http://groups.google.com/group/CMLHope --- 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 [email protected]_ (mailto:[email protected]) . For more options, visit https://groups.google.com/d/optout. -- [email protected]_ (mailto:[email protected]) _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 [email protected]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at http://groups.google.com/group/CMLHope --- 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 [email protected]_ (mailto:[email protected]) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at http://groups.google.com/group/CMLHope --- 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 [email protected]_ (mailto:[email protected]) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at http://groups.google.com/group/CMLHope --- 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 [email protected]_ (mailto:[email protected]) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]_ (mailto:[email protected]) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]_ (mailto:[email protected]) . For more options, visit https://groups.google.com/d/optout. Susan Zimmerman <[email protected]>: Oct 10 12:15PM -0400 Hi Beth, Be careful on the melatonin. I use it every night to sleep, but only 2 mg, not 10!!! I have read several places that anything over two mg is an overdose which is not good for your liver and kidneys. Praying for all your issues to get better as you continue to look for answers. So sorry about the sleep issues and muscle issues. I am doing well but fighting a nasty cough at present. Prayers going up for everyone on this site!!! Susan -----Original Message----- From: Myvety2k via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Fri, Oct 10, 2014 7:40 am Subject: Re: [CMLHope] Re: Sprycel side effects Beth Hi Beth, Go to Drugs.com and check out Promethazine 25 mg. I was using the drug for nausea but it all so works if you have a problem sleeping. Check with you Doctor first and go to Drugs.com and look it up for what it can be use for. I cut mine in haft because taking the 25mg. knots me out. Greenie In a message dated 10/10/2014 12:15:01 A.M. Eastern Daylight Time, [email protected] writes: Hi Jeannie. I hope your pain gets better..Glad you too do well otherwise..with the sprycel. I also want to say hi to Marty and just letting you know that I am continuing to pray for you daily for a transplant to come through. Your home in Penn. is beautiful..so peaceful...hope you and your sweetie can get back there post successful transplant. fingers crossed.. A question I have for the group. I am struggling with really really bad insomnia. I don't know the causes..probably multi factorial but whatever it is..it's putting great stress on my body and I just cannot get good rest..which, as we all know affects everything else negatively. Do any of you know something I could try that would not be contra indicated with the sprycel that might help? I have tried the usual suspects..to no avail. Seeing Dr. Druker two weeks from today...see how close we all are to a cure.......:) always hoping... Goign to Wash U in November to a neuro muscular specialist to try and define what is going on with my muscle loss, elevated CPK, and other pieces that test positive in my blood and muscle biopsy. I have yet to know anyone who has these issues...so hopefully it's not the sprycel..but a concurrent thing that has come up that can finally be diagnosed successfully so it can be treated..so I can get stronger...this will also help my spine and neck to heal post surgeries...hard to heal when you are always deteriorating- burning muscle.. Saying positve and counting my blessings each and every day.. just thought I would report in ...the warm water PT is my saving grace..feel so much better in there... three times a week...working part time....old pooch Gracie now 15.5 lost her hearing int he last few months...still plugging along..great role model..hs lots of health stuff...older age mostly...but wants to walk and play and snooze every day..still eats well..and loves her treats.....I love her so. love and prayers to all my colleagues and friends here...too many names to list by now!!!! Beth -----Original Message----- From: ICANDOALLTTC via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Thu, Oct 9, 2014 5:54 am Subject: Re: [CMLHope] Re: Sprycel side effects Beth Hi Beth and so glad to hear from you and that you are doing well. It is good to hear that you are still on Sprycel and doing good. I am on 100 mgs daily and so far, no PE. Blessings and keep fighting! Jeanie<3 In a message dated 9/21/2014 11:17:31 P.M. Eastern Daylight Time, [email protected] writes: HI all. Just wanted to offer my experiece to the mix. I have been on sprycel for 4 years in November, with some breaks for back/neck surgeries unrelated. In the beginning, I did get very mild PE which showed up on a chest xray that was done as a pre-surgery clearance test. It was not major. My doc did but me on furosimide 20 mgs plus potassium daily..and stated I needed to stay ahead of any possible swelling side effects if possible. I eat a low sodium diet and take this med religiously in the a.m....sprycel before bedtime. I am blessed to have no further issues with any PE for the last 3.5 years. So, in my experience, I believe a daily diuretic with the sprycel has truly helped me. I am also on a low dose which maintains me at barely detectable to undetectable......40 mgs. I am truly blessed. Hope all is well with everyone. I miss you all. Still navigating back issues so not on line much at all these days...but keep everyone in my thoughts and prayers. My CML is in good control and I count my blessings....including all of you...take good care. warm regards, a 18 s.....to all of you.... ( marty still prayng for a transplant..for you..) Beth -----Original Message----- From: LearnToBallroomDanceOnline.com <[email protected]> To: cmlhope <[email protected]>; pkshaub <[email protected]> Sent: Fri, Sep 19, 2014 11:23 am Subject: Re: [CMLHope] Re: Sprycel side effects Hi Peter, While it is true that many develop PE while on Sprycel; the upside is that the PE often coincides with PCRU! And unfortunately diuretics do not reduce the fluid that actually is in the sac that surrounds your lungs. For me it usually takes a break from Sprycel; I know that many people avoid Sprycel because of this risk, but to me, the risk of pleural effusion is less of a risk that the ones that come with Tasigna's Black Box Warning. My PE's have been more of an inconvenience at this point and fortunately clear quickly. Best to you all, Michele On Fri, Sep 19, 2014 at 4:54 AM, Peter <[email protected]> wrote: >From what I have read here and elsewhere, it seems to me that Sprycel will >definitely cause PE, it is only a question of WHEN, not IF. For this reason, I have avoided this drug like the plague. Currently, Tasigna is keeping at a 3.2 log reduction, which is a sub-optimal response. My doctor keeps telling me, that PE is "easily controlled with diuretics". However, I have not heard this from anybody else. Does anyone here know anything about the use of diuretics to control PE? Peter On Monday, September 8, 2014 11:33:33 PM UTC-4, grammie wrote: Have been reading the reports of various CMLers having side effects from the various TKIs. Jut wanted to weigh in with my husband's latest experiences. He was short-winded and family doc ordered a chest X-ray which revealed some effusion. We reported this to Dr Talpaz (his CML specialist) and Dr T wanted him to have an echogram which we were able to do locally with his regular cardiologist. Dr T said to quit taking Sprycel immediately and not to continue until he and the cardio conferred. As of now, he will have another echo in a week to see if there is any change one way or the other. He has an appointment with Dr Talpaz in Michigan the middle of October and it sounds like they are going to have him stay off Sprycel until at least then. It's kind of scary being off the medication that you know is saving your life. But Dr T is not concerned. Don't know where this is going next. All part of the journey. Continue to pray for all the warriors out there. Thank you for your input. Joyce in IL -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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