Hi Marty, I Hope this message fines you well. Sorry to be so late in responding to you, but I do not use the computer on the Sabbath and I haven't been feeling well.
So to answer your question, Gleevec has a very bitter astringent taste, and when you swallow it, the liquid burns all the way down. I would imagine it would be like drinking Drano only less caustic. No matter what you I do I can not get rid of the taste. I've brushed my teeth, used mouthwash and that tasted is still there for hours. On top of that, because I'm taking it in a liquid, I have mouth sores that never heal and each time I take my medication, I reopen the sores. It's also hard on the enamel of my teeth or at least that is what my dentist tells me. I would much rather swallow the pill but due to my paralyzed stomach, I can no longer do that. So what did Cyclosporine taste like? I can't image that it was very tasteful. L'chaim On Fri, Jul 17, 2015 at 2:34 PM, Marty Gartenberg <[email protected]> wrote: > 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 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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 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