Yes me too. So sorry. My husband had diabetes and suffered with mouth sores. I hAd really bad sores while on Gleevec. My sores were on my lower parts And were like boils that came in sets of three. I found you had to take your Gleevec with really mild foods. Have you tried taking it with milkshakes? Or ice cream? Gleevec threw every thing it could at me and I fought through it for 5 years. Prayers to you all.
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 23, 2015, at 1:34 PM, Marty Gartenberg <[email protected]> wrote: > > Hi Sherri, > > I feel so sorry for you to have to tolerate such a terrible taste in your > mouth, and what is even worse are those mouth sores. It is like having a > never ending battle. > > Maybe I can help you with something called > Biotene/www.biotene.com/products/mouthwash > > Even though is it basically for dry mouth it usually helped with some of the > mouth sores. Hopefully it may also help you. You could try a small size just > to see if it works. > > So what did Cyclosporine taste like? It tasted like a septic sewer only > coated with some sort of a rotten oily moldy aftertaste. And that was in the > liquid form of it. However in the capsule it was so large (there were six of > them three time a day) that it made me vomit all of the time. And by the way > it was always with severe mouth sores. > > So Sherri, at the next opportunity which will be on the Sabbath (tomorrow) I > would also like to wish you, aHi Sherri, > I feel so sorry for you to have to tolerate such a terrible taste in your > mouth, and what is even worse are those mouth sores. It is like having a > never ending battle. > > Maybe I can help you with something called > Biotene/www.biotene.com/products/mouthwash > > Even though is it basically for dry mouth it usually helped with some of the > mouth sores. Hopefully it may also help you. You could try a small size just > to see if it works. > > So what did Cyclosporine taste like? It tasted like a septic sewer only > coated with some sort of a rotten oily moldy aftertaste. And that was in the > liquid form of it. However in the capsule it was so large (there were six of > them three time a day) that it made me vomit all of the time. And by the way > it was always with severe mouth sores. > > So Sherri, at the next opportunity which will be on the Sabbath (tomorrow) I > would also like to wish you, a continued Refuah Shleimal, and L'chaim > > And, as always 18's > > Marty > > > > > > > > > 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 Thu, Jul 23, 2015 at 3:25 AM, sherri swanson >> <[email protected]> wrote: >> 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 >>>>>>>>> --- 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