I hope your Surgery goes well. My prayers are being lifted and as always 18's
Richard H. On Monday, September 22, 2014 6:34:30 AM UTC-5, [email protected] wrote: > 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] <javascript:> 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] <javascript:>> 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] <javascript:>> > > To: cmlhope <[email protected] <javascript:>>; pkshaub < > [email protected] <javascript:>> > > 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] <javascript:>> > 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] > <javascript:> > >> To unsubscribe from this group, send email to > >> [email protected] <javascript:> > >> 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] <javascript:>. > >> 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] > <javascript:> > > To unsubscribe from this group, send email to > > [email protected] <javascript:> > > 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] <javascript:>. > > 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] > <javascript:> > > To unsubscribe from this group, send email to > > [email protected] <javascript:> > > 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] <javascript:>. > > 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] <javascript:> > To unsubscribe from this group, send email to > [email protected] <javascript:> > 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] <javascript:>. > 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.
