Hi Jeanie, I too take water pills daily. Wish I could say they help, but I'm sure in some way they do or I wouldn't be taking them. 😀 I had talked to the doctor about vein stripping but because of my counts he said absolutely not. I can't even have dental work done without blood tests to see what my counts are. But it is okay. Like my mother use to say everyday is a new day.
I don't mind the tkis anymore after all these years. I've grown accustom to all the side effects and all the other stuff. I was lost when they took me off of the Gleevec. Felt like I was missing something. Crazy I know. Hope you're feeling well. L'chaim, Sherri On Thu, Nov 10, 2016 at 6:26 PM, 'Jeanie' via CMLHope < cmlhope@googlegroups.com> wrote: > Hi Sherri > My sister has terrible leg edema and she doesn't have CML. She had her > vein stripped and it has helped. She takes water pill daily. I'm like you > can't quit the tkis. Blessings. > > My Motto: > Faith and Pills > With Love > 🐠18's > Dx 1/2004 CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib 1/2015 > Doctor Balducci Moffitt Cancer Center > > On Nov 9, 2016, at 3:01 AM, sherri swanson <swanson.sherri...@gmail.com> > wrote: > > I heard about this and when I was having some edema, my oncologist took > me off my Gleevec as all of my doctors were sure that was the reason for my > leg edema. I was off the Gleevec for 6 months and in that time my counts > started going up. Slowly at first and then by the 6th month very quickly. > My oncologist advised me that I will not be able to stop the Gleevec as it > took me so long to get my count down when I first started it 14 years ago. > > So today I am back on my original dosage of 600mg of Gleevec once a day > and the edema has never been figured out and my legs still get to 24 inches > around on any given day. But the good news, my counts are back within > range. I'll take it. > > Hope everyone is doing well. > > L'Chaim > > Sherri > > On Mon, Nov 7, 2016 at 2:50 PM, 'Jeanie' via CMLHope < > cmlhope@googlegroups.com> wrote: > >> Good to hear from you and I know what you mean. I get tired of it all too >> but I've been a CML warrior almost 13 years and live by faith and pills. >> I'm on my fourth tki now and I feel it's my last try. I can't go off >> because my platelets and wbc go sky high when I do. Just get your rest >> and eat healthy, get some exercise and get lots of love. Hang in there >> warrior. ♥️♥️ >> Marty give us an uplift today. >> >> My Motto: >> Faith and Pills >> With Love >> 🐠18's >> Dx 1/2004 CML Leukemia >> Started Gleevec 2/2004 >> Started Tasigna 9/2009 >> Started Sprycel 11/2009 >> Started Ponatinib 1/2015 >> Doctor Balducci Moffitt Cancer Center >> >> On Nov 6, 2016, at 12:42 AM, Richard H <rbhuffm...@gmail.com> wrote: >> >> Ryan Romero >> Today at 12:11 PM >> >> - >> - >> >> Hi everyone!!! >> >> I hope you all are doing well and continuing the fight! >> >> I wanted to share with you all a fantastic front page article in CURE >> Magazine and also ask you if anyone has tried or had success with the LAST >> Trial. I know some of you have asked your oncologists about this in the >> past but never say any updates. >> >> For those that don't know what this trial is; after 3-4 years of pcrU on >> TKIs (your chemo- gleevec for me), they are pulling people off gradually. >> Reports show 50% remain pcrU !!! >> >> Today is a bad day for me. I'm tried of the side effects of treatment and >> overall just tired. Needing some inspiration I picked up my CURE Magaizine >> and noticed that CML was on the front page. Here's a link below. >> >> http://www.curetoday.com/publications/cure/2016/hematology- >> 2-2016/targeted-power-improving-prognoses-for-patien >> ts-with-chronic-myeloid-leukemia. >> >> >> Ryan "chemo-sabi" >> dx-10.27.2009 >> Interferon-10/09-12/09 >> Gleevec-400mg 1xd-12/09-02-11 >> BCR-ABL- undetectable 2/2011 >> 02/2011-Today- 400mg gleevec >> >> -- >> -- >> [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 CMLHope@googlegroups.com >> To unsubscribe from this group, send email to >> cmlhope-unsubscr...@googlegroups.com >> 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 cmlhope+unsubscr...@googlegroups.com. >> 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 CMLHope@googlegroups.com >> To unsubscribe from this group, send email to >> cmlhope-unsubscr...@googlegroups.com >> 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 cmlhope+unsubscr...@googlegroups.com. >> 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to CMLHope-unsubscribe@ > googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to CMLHope-unsubscribe@ > googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
