Hey Marty dear,
All of us are rallying around you, even if some of us haven't written (yet). Boy, you have a tough road to hoe, and maybe it will be over soon as your blood vessels get healthier. We are on your side, praying fervently for a way for that fistula to be resurrected. Also for the kidney to be donated that will help you get off dialysis. Not many of us have gone through anything like your own brand of suffering, especially over this ten-time operation to get that fistula working!!! I know that's no picnic after watching my brother-in-law go through getting one inserted. He also had to go back because of collapsing veins, same problem. Then they decided he didn't even need it yet, as his kidneys improved enough that he was farther away than he thought from dialysis! Lifting you up in prayer, and 18's, Susan This quote from your Bible still means what it says! I'm standing on it for you!!! This is my trademark instead of the "18's" "Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you." Hab. 1:5 -----Original Message----- From: Myvety2k via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Mon, Sep 22, 2014 8:19 am Subject: Re: [CMLHope] Re: Sprycel side effects Marty, I hoping all goes well for you on the second surgery I know this can't be the must fun thing that you want to go through at this point. I'll be thinking of you. I have connections up above, I'm going to put a word in for you so you can get that transplant soon. Take care, greenie In a message dated 9/22/2014 7:00:16 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. 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.
