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.
