Good Morning to you Marty, I sure hope your surgeries go well. I know you are a fighter and will get through it all with your faith and great warrior skills. I am fighting these high blood platelets and hope they are good on my visit to Moffitt Thur. I will let you know. As you know, they have gone out of whack on me three times now. I'll just fight on as usual. The pain in my side hurts more now than ever, pain meds don't seem to touch it. I deal with that everyday as with everything else. Time to get a flu shot. I take one yearly and it really helps me. Do you go back to PA ever now? You have a home there right? I am going to visit my baby daughter the end of this month. Just have to get my meds first. Well, Good luck on your surgeries; I am praying for you and all everyday. Love and Blessings, Jeanie<3 In a message dated 9/22/2014 7:00:15 A.M. Eastern Daylight Time, [email protected] writes:
Beth, I am very pleased to be hearing that your doing so well. May it even get better fro you and everyone else. I just had another round of surgery on my arm to correct the narrowing in my blood vessels for the fistula in order to get my dialysis. This was done eleven days ago and it still isn't working right so I am now scheduled for another round of surgery this tuesday. This will be the tenth and it seems that this has been going on every two months so I really need that kidney transplant as soon as possible but I still haven't heard anything as when. I can really use everyones prayers on this, and I thank you for them. 18's, Marty On Sun, Sep 21, 2014 at 11:17 PM, bkbarney via CMLHope <[email protected]> wrote: > 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. 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