Dear Beth, Marcie and everyone else. Please don't be fooled Somnapure's main ingredient is Melatonin. So yes it is safe and Melatonin is very effective. I have never tried the product Somnapure, but I often use products with Melatonin in it. I've found that Melatonin is a lot more effective then some prescription sleep aids. Your brain naturally releases Melatonin to help you sleep, and so taking Melatonin supplements always seemed to be the best sleep I've gotten because there is no "hangover" in the morning. You aren't groggy and still half asleep.
Somnapure costs $39.99 at GNC. $25.94 at Amazon. !4.99 at CVS. You can buy Melatonin for $10.47 three bottles of 120 tablets each. Melatonin 3 mg <http://www.puritan.com/melatonin-542/melatonin-3-mg-007903> [image: Melatonin 3 mg] <http://www.puritan.com/melatonin-542/melatonin-3-mg-007903> <http://www.puritan.com/melatonin-542/melatonin-3-mg-007903#tab-2> Save 50% 3 for $10.47 Only $3.49 each <http://www.puritan.com/mvc/shoppingcart/add?itemnumber=7903&quantity=3&legacycategoryid=542> Save 60% 5 for $13.95 Only $2.79 each <http://www.puritan.com/mvc/shoppingcart/add?itemnumber=7903&quantity=5&legacycategoryid=542> 3 mg / 120 Tablets 18.s Marty On Wed, Oct 15, 2014 at 9:39 PM, 'Marcie Goodman' via CMLHope < [email protected]> wrote: > Hi Beth, > > You go through so much and you handle it with a tremendous amount of > grace. I'm glad the water PT feels good because at least 3 times a week you > can look forward to it. > > I have yet to find a good sleep aid. I used ambien and it does knock me > out but it is habit forming. And, in time, you only sleep about 3-4 hours. > I've heard of a natural product called Somnapure, available in Walmart and > Walgreens, so I may give that a try. > > Our pets really are so loving and comforting and I'm sure Gracie is pure > joy. I feel that way about my 2 cats. > > Please let us know what Dr Druker has to say. I'll keep you in my prayers > and hope that you find answers to those muscle problems. > > Marcie > > Sent from my iPhone > > On Oct 13, 2014, at 9:22 PM, bkbarney via CMLHope < > [email protected]> wrote: > > 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] > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!forum/cmlhope/topics> > Google > Groups > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> > Topic digest > View all topics > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!forum/cmlhope/topics> > > - New Results > <https://mail.aol.com/38798-111/aol-6/en-us/Suite.aspx#group_thread_0> > - 3 Updates > - Sprycel side effects Beth > <https://mail.aol.com/38798-111/aol-6/en-us/Suite.aspx#group_thread_1> > - 5 Updates > > New Results > <http://groups.google.com/group/cmlhope/t/9173b5fa636f198b?utm_source=digest&utm_medium=email> > 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 > <https://mail.aol.com/38798-111/aol-6/en-us/Suite.aspx#digest_top> > Sprycel side effects Beth > <http://groups.google.com/group/cmlhope/t/5ce5b458031476a7?utm_source=digest&utm_medium=email> > 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 <http://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 <http://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] > <[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 > <http://learntoballroomdanceonline.com/> <[email protected]_ > (mailto:[email protected] <[email protected]>) > > To: cmlhope <[email protected]_ (mailto:[email protected] > <[email protected]>) > >; pkshaub <[email protected]_ (mailto:[email protected] > <[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] <[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] <[email protected]>) > To unsubscribe from this group, send email to > [email protected]_ ( > mailto:[email protected] > <[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] > <[email protected]>) . > For more options, visit https://groups.google.com/d/optout. > > > > > > > > > -- > [email protected]_ > (mailto:[email protected] > <[email protected]>) > _www.LearntoBallroomDanceOnline.com > <http://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] <[email protected]>) > To unsubscribe from this group, send email to > [email protected]_ ( > mailto:[email protected] > <[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] > <[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] <[email protected]>) > To unsubscribe from this group, send email to > [email protected]_ ( > mailto:[email protected] > <[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 > <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] <[email protected]>) > To unsubscribe from this group, send email to > [email protected]_ ( > mailto:[email protected] > <[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] > <[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] > <[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 <http://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 <http://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] > <[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 > <http://learntoballroomdanceonline.com/> <[email protected]_ > (mailto:[email protected] <[email protected]>) > > To: cmlhope <[email protected]_ (mailto:[email protected] > <[email protected]>) > >; pkshaub <[email protected]_ (mailto:[email protected] > <[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] <[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] <[email protected]>) > To unsubscribe from this group, send email to > [email protected]_ ( > mailto:[email protected] > <[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] > <[email protected]>) . > For more options, visit https://groups.google.com/d/optout. > > > > > > > > > -- > [email protected]_ > (mailto:[email protected] > <[email protected]>) > _www.LearntoBallroomDanceOnline.com > <http://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] <[email protected]>) > To unsubscribe from this group, send email to > [email protected]_ ( > mailto:[email protected] > <[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] > <[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] <[email protected]>) > To unsubscribe from this group, send email to > [email protected]_ ( > mailto:[email protected] > <[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] > <[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] <[email protected]>) > To unsubscribe from this group, send email to > [email protected]_ ( > mailto:[email protected] > <[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] > <[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] > <[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] > <[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 <http://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 > <http://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 > <http://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. > 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. > > > > > > > > -- > [email protected] > www.LearntoBallroomDanceOnline.com > <http://www.learntoballroomdanceonline.com/> > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [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. > > > -- > -- > [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. > > > -- > -- > [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. > > > > -- > -- > [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. > > > -- > -- > [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. > Back to top > <https://mail.aol.com/38798-111/aol-6/en-us/Suite.aspx#digest_top> > You received this digest because you're subscribed to updates for this > group. You can change your settings on the group membership page > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!forum/cmlhope/join> > . > To unsubscribe from this group and stop receiving emails from it send an > email to [email protected]. > > -- > -- > [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. > > -- > -- > [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. > > -- > -- > [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. > -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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