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 >>>>> --- >>>>> 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. >> 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.
