Hi greenie, I was thinking of you when I went to moffit the other day. My blood pressure shot up along with my heart beats. This happens every time I go to the dr. I hope you and yours are good. Jeanie
Sent from my iPhone > On Oct 10, 2014, at 7:48 AM, Myvety2k via CMLHope <[email protected]> > wrote: > > 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] 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 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