Hi Sherri, I am just curious I have tasted some awful things in my life, including liquid Cyclosporine with was the absolutely worth thing I have ever tasted in my life, but since i have never been on Gleevec can you tell me what does it taste?
On Fri, Jul 17, 2015 at 2:32 PM, sherri swanson <[email protected] > wrote: > No problem. It is strange to tell someone that you don't eat solid food > and still take Gleevec. Or whenever I say that my stomach is paralyzed I > get the funniest looks. 😮 But I just explain what kind of illness I have > and people are so surprised. But I will say one thing, that Gleevec is just > awful tasting. But I've been doing for so long now that I've grown accustom > to the taste. Now that is sad. 😉 > > Hope everyone has a great weekend. Try and stay cool. It is going to be in > the 90's here in the Chicago area and very humid too. > > L'chaim > > Sherri > > On Fri, Jul 17, 2015 at 12:33 PM, 'Icandoallttc' via CMLHope < > [email protected]> wrote: > >> Hi Sherri and all. >> I guess we have to realize that we are so unique and different. We have >> to do what we have to do to survive. >> When I first went on Gleevec it wasn't working. So we crush the pills and >> everything hoping it would work. I didn't know at the time that we were >> not supposed to crush the pills. >> I do know that some people can't swallow pills. I'm so sorry to hear >> about your stomach problems. I hope you get better. >> Thanks so much for your story. >> >> My Motto: Faith and Pills >> Jeanie 🐟🐟18,s >> Dx 1/2004. CML Leukemia >> Started Gleevec 2/2004 >> Started Tasigna 9/2009 >> Started Sprycel 11/2009 >> Started Ponatinib January 2015 >> Dr Balducci Moffitt Cancer Center >> >> On Jul 16, 2015, at 2:43 PM, sherri swanson <[email protected]> >> wrote: >> >> Hi everyone, >> >> While it is true we are not to take PPI's and we are to take our Gleevec >> with a meal, I happen to be the exception to that rule. I've been on >> Gleevec since 2002. I have not taken my Gleevec with any solid food in 6 >> years. I have a paralyzed stomach and I can no longer digest solid food. SO >> I must have only liquids. The only way I can take my Gleevec is dissolved >> in 3 ounces of apple juice. NOW, I do not recommend that everyone go out >> and do this as it is very hoard to tolerate and I am very sick when I take >> my Gleevec this way. But it is the only way I can get it in and it was >> doctor recommended. And, let me tell you, it tastes awful! >> >> As for the PPI's, I've been on those for as long as I've been on the >> Gleevec. However, do to my kidney disease, my nephrologist has taken me off >> of the PPI and my stomach is very angry with me. More so than before. >> >> Now, I do not recommend that you go out an take the PPI's and Gleevec at >> the same time. I'm a special case and I was able to tolerate. Jeanie is >> correct when she says you should follow the instructions from the packet. >> I'm just relaying my experience. >> >> L'chaim >> >> Sherri >> >> On Thu, Jul 16, 2015 at 1:02 PM, 'Icandoallttc' via CMLHope < >> [email protected]> wrote: >> >>> Hello all. >>> When I was in the hospital in 2009 after Gleevec failed I kept asking my >>> onc at the time to start me on Sprycel. He wouldn't at first but finally a >>> nurse convinced him to do it. He was giving me 600 mgs Gleevec plus other >>> drugs. My platelets and WBC were very high and not coming down even after >>> blood cleansing. >>> He came in my room and gave me a prescription for Sprycel. The hospital >>> I was in couldn't get the Sprycel so my son had it filled at Walgreens. I >>> was reading the Sprycel information and it said no proton pump inhibitors. >>> I found out that due to my side pain they were giving me a proton pump >>> inhibitor twice a day. No wonder the meds weren't working! >>> I refused to take the inhibitor again. >>> The Sprycel put me into remission in just a few months. So be your own >>> doctor at times and read the info on your drugs. >>> >>> My Motto: Faith and Pills >>> Jeanie 🐟🐟18,s >>> Dx 1/2004. CML Leukemia >>> Started Gleevec 2/2004 >>> Started Tasigna 9/2009 >>> Started Sprycel 11/2009 >>> Started Ponatinib January 2015 >>> Dr Balducci Moffitt Cancer Center >>> >>> On Jul 16, 2015, at 6:39 AM, "'Icandoallttc' via CMLHope" < >>> [email protected]> wrote: >>> >>> Hi we are not supposed to have proton pumps on tkis. I'm so sorry he is >>> sick. He is supposed to take his gleevec with a large meal. I took mine >>> with my breakfast. Read your gleevec info and see the info there. Has he >>> added any new med? >>> Keep him on mild food and see a dietician if possible. Good luck. >>> My Motto: Faith and Pills >>> Jeanie 🐟🐟18,s >>> Dx 1/2004. CML Leukemia >>> Started Gleevec 2/2004 >>> Started Tasigna 9/2009 >>> Started Sprycel 11/2009 >>> Started Ponatinib January 2015 >>> Dr Balducci Moffitt Cancer Center >>> >>> On Jul 15, 2015, at 2:47 PM, "[email protected]" < >>> [email protected]> wrote: >>> >>> I would ask your Oncologist about alternative drugs to Gleevec. >>> >>> On Wednesday, July 15, 2015 at 1:00:14 AM UTC-7, Choi wrote: >>>> >>>> Hi, this is Choi. >>>> >>>> My friend's 12 years old son have CML. He got diagnosed when he was 7 >>>> years old and on 200mg Gleevec for 5 years. >>>> >>>> Recently he has been suffering from severe nausea and stomach pain >>>> (sign of gastritis) for 2 weeks. >>>> >>>> His Doctor gave treatment for gastritis; proton pump inhibitor, PPI. >>>> but it doesn't work. >>>> >>>> Do you have any advice for relief from withdrawls symptoms? >>>> >>>> Choi. >>>> >>> -- >>> -- >>> [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. >> > > -- > -- > [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. 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