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. > 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 > > -- > -- > [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 > You received this digest because you're subscribed to updates for this group. > You can change your settings on the group membership page. > 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. 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