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]> 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 > <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.
