Re: [CMLHope] Re: 12 years old boy with CML

2015-07-27 Thread sherri swanson
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

Re: [CMLHope] Re: 12 years old boy with CML

2015-07-26 Thread sherri swanson
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

Re: [CMLHope] Re: 12 years old boy with CML

2015-07-26 Thread Marty Gartenberg
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

Re: [CMLHope] Re: 12 years old boy with CML

2015-07-23 Thread Marty Gartenberg
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

Re: [CMLHope] Re: 12 years old boy with CML

2015-07-23 Thread 'Icandoallttc' via CMLHope
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

Re: [CMLHope] Re: 12 years old boy with CML

2015-07-23 Thread sherri swanson
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

Re: [CMLHope] Re: 12 years old boy with CML

2015-07-17 Thread 'Icandoallttc' via CMLHope
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

Re: [CMLHope] Re: 12 years old boy with CML

2015-07-17 Thread sherri swanson
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

Re: [CMLHope] Re: 12 years old boy with CML

2015-07-17 Thread Marty Gartenberg
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

Re: [CMLHope] Re: 12 years old boy with CML

2015-07-16 Thread 'Icandoallttc' via CMLHope
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

Re: [CMLHope] Re: 12 years old boy with CML

2015-07-16 Thread sherri swanson
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

[CMLHope] Re: 12 years old boy with CML

2015-07-15 Thread kevin.l.willi...@gmail.com
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