Hi all, just a note to say I'm ok. I've been sick but doing better. I hope every one is good tonight. I take 5 Mgs zolpidem for sleep each night but you have to take it for a while for it to work well. Also you must go right to bed after taking it and go right to sleep. I have a problem with feeling my heart beat when I lay down to sleep. It works for me but every one is different. I have tried every sleep aid and steps for sleep so I know how hard this is and I have had insomnia for many years. Keep trying until you find something that works as rest is very important. Blessings to all. Jeanie
Sent from my iPhone > On Oct 19, 2014, at 2:40 PM, bkbarney via CMLHope <[email protected]> > wrote: > > Dear Marty, Peter, Greenie, Jeannie, Susan and everyone who responded > regarding my insomnia.. Thanks for all your input. Very helpful! Sorry I > haven't written sooner. Just not feeling great. ...Will ask Dr. Druker about > sleep options etc...will check in when I return from my trip. Hope everyone > who experiences fall is enjoying the leaves changing. It's cold out today but > thepromise of 60's later in the week is suomething to look forward to. Marty, > still praying for you and a transplant!! > > Love to all, 18's Beth > > > -----Original Message----- > From: Peter <[email protected]> > To: cmlhope <[email protected]> > Sent: Fri, Oct 10, 2014 4:21 am > Subject: Re: [CMLHope] Re: Sprycel side effects Beth > > 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: >> 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. -- -- [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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