I want to thank everyone for their thoughts and prayers. Hopefully soon I will finally be able to get a kidney transplant. Until then I will just have to hold on.
To answer a question that was asked of me. I still have my house in Pennsylvania but I couldn't go there this summer because I have to wait in Florida for a call for my kidney transplant. 18's Marty On Mon, Sep 22, 2014 at 8:19 AM, Myvety2k via CMLHope <[email protected]> wrote: > 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.
