On Monday, July 27, 2015, sherri swanson <[email protected]> wrote:
> You are correct about learning from our parents. I learned from my > grandparents. They were from Europe and when they first came here spoke no > English at all. It was not until my mother, their first born went to school > did they learn how to speak English. When I was at my grandparents home I > was not allowed to speak English. It was always Hebrew. I learned all my > traditions from my grandmother as well as cooking. > > I too mean cure all those that are afflicted with illness and disease. I > would love to see every disease wiped out and every person live their pain > & drug free. I've been praying for this for a very long time and not > because I am ill or because I had family members who were very sick. I use > to work in the medical profession and I saw a lot of pain and suffering > that I could do nothing about. When it comes to myself, I am the type of > person that does not wallow in my pain. I do not find any comfort in that, > and it does not help. I find that if I find something to do to help others > in some way, then I have been productive. And besides, weather I'm doing > something or not, the pain will be there, so I might as well be doing > something. > > I am glad that you are the way you are Marty. It keeps you going. And the > ability to speak seven languages is an asset. And to get five of those > languages back within a day after your stoke is amazing. Was English more > of a second language in your home? That could be why English took so long > to come back after your stroke. What part of Europe did your parents come > from? What other languages do you speak? I can also speak German and some > Russian and I learned Spanish in high school. Of course when I was in > medicine we had to know Latin. Oh my, did I just date myself? LOL However, > I don't remember very much of that. > > How are you recovering from your stoke? Are you doing PT or anything like > that? > > L'chaim > > > > On Sun, Jul 26, 2015 at 3:52 PM, Marty Gartenberg <[email protected]> > wrote: > >> He will heal us, oh God, and we need to heal up and save us, and we will >> be saved, one we praise is you. To bring complete healing for all our >> diseases, Ho Chi Minh Mausoleum of God, you are loyal to us merciful King. >> God bless you, Sir, cure the patients of Israel >> >> When I mean "cure the patients of Israel" I mean cure every person that >> is afflicted with any disease through the world. >> >> As you must know I have been through some difficult time in the last >> several months and even more in the last 26 years ever since my bone marrow >> transplant but I still refuse to complain because I find that it does't >> help me. I have a much better way of dealing with things, which I have been >> doing for a long time. Trying to help people including my self as well as >> others. >> >> Mt Kidney transplant, my prostate operation, and my stroke, but I seem to >> get through these. >> Right after my stroke, at first I wasn't able to speak to well but as >> time went in only a couple weeks >> I got most of my speech back. >> >> A funny happened within a day or so I was able to get at least five of my >> languages back with full understanding I was even able to get the speech >> back but not my English until a month ago. Still working on that but almost >> completely >> >> When I was a young child my parents were from Europe and they spoke >> several languages >> So we learned from them. >> >> 18's and L'chaim >> >> Marty >> >> >> On Sun, Jul 26, 2015 at 11:56 AM, sherri swanson < >> [email protected]> wrote: >> >>> Hi Marty, >>> >>> As you can guess, it is Sunday. >>> You are correct when you say that Gleevec is a terrible taste but I >>> don't have to much of a choice. I did stop it for awhile under my doctors >>> advice and my numbers went threw the roof so he put me right back on the >>> medication. When he first put me on the Gleevec, it took me 2.5 years just >>> to get my numbers in the somewhat normal range. My CML is very stubborn. >>> >>> Thanks for the tip on Biotene. I have tried that and now I'm something >>> else as that didn't work. Like I said above stubborn. Everything I have is >>> that way. They like me for some reason and don't want to leave me. LOL ! >>> 馃槈 The new stuff I take is called Xylimelts and it has a mild mint flavor >>> that I love and they are all natural. They help increase saliva which is >>> something I need as I tend to get blacked salivary glands. ANd boy is that >>> ever a painful experience. >>> >>> I must say your Cyslosporine description does not want to make me run >>> out and try it any time soon. LOL I'm telling you, these drugs we take, >>> something they are almost as bad as the disease we have. >>> >>> Thank you for Sabbath wish and the get well wish. I have something for >>> you as well. >>> >>> >>> 诇专驻讗 讗讜转谞讜, 讛讜 讗诇讜讛讬诐, 讜讗谞讞谞讜 爪专讬讻讬诐 诇讛讬专驻讗; 诇讛爪讬诇 讗讜转谞讜, 讜讗谞讞谞讜 讬讬砖诪专讜, >>> 诇讗讞讚 讗谞讜 诪砖讘讞讬诐 讛讜讗 讗转讛. 诇讛讘讬讗 专讬驻讜讬 诪诇讗 诇讻诇 讛诪讞诇讜转 砖诇谞讜, 诇讛讜 讗诇讜讛讬诐, 讗转讛 >>> 谞讗诪谉 诇谞讜 讜诪专驻讗 专讞讜诐 讜诪诇讱. 讘专讜讱 讗转讛, 讗讚讜谞讬, 诪专驻讗 讗转 讛讞讜诇讬诐 砖诇 讬砖专讗诇. >>> L'chaim >>> >>> On Thu, Jul 23, 2015 at 1:17 PM, 'Icandoallttc' via CMLHope < >>> [email protected]> wrote: >>> >>>> 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 馃悷馃悷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. 馃槷 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. 馃槈 >>>>>>> >>>>>>> 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 馃悷馃悷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 馃悷馃悷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 馃悷馃悷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 CMLHope-unsubscribe@ >>>>>>>>> googlegroups.com >>>>>>>>> For more options, visit this group at http://groups.google.com/ >>>>>>>>> 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