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. 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