Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Hi Friends, I don't post much but I read all your posts every day on my phone I haven't just figured out how to post from my phone yet. I need some support just got my BCR/ABL results and they were 3.2 up from the last 1.9 I know we're not supposed to but I am freaking out!!!!!!! My oncologist has already suggested he wants to do a BMA...can they just bounce around this much??? I was so hoping to be PCRU I need your thought on this Donna x DX May 24, 2007 on Gleevec since 7/2007 > > , > > At least you know it could be Celiac, and this gluten problem plaques most > of us in the USA and especially in Europe. > > Most of our children in the USA who are obese, are children who have the > gluten problem, yet, most Physician, and or Pediatrics do not know that most > of the problems are due to our fatten processed foods in the USA products. > > My daughter and I have had this problem for many years, and I purchase > many varieties of gluten-free foods, from many gluten areas. What I found > utilizing gluten-free bread, pizza, and even pancake mixes, was there were > too much sugar or salt contained in the mixes, and if you buy each ingredient > separately and make your own homemade gluten-free products it is a trial > and error, because one needs to add more liquids in each batter, and or > substitute other things to enable one to consume them. > > As my daughter gets older, we found that most of the products we purchased in a box, was not necessary, as it was no longer important to consume how > schools set up pizza parties for every event. > > I hope you find an answer about Gleevec and if does contain gluten, please > email me and let me know? Someone once informed us on this site, a specific place where the ingredients of Gleevec could be found. Perhaps you could inquiry this through Tracey and or Lottie. > > I don't know where you live, however in Canada there is Kinmicnick Foods > from Montreal, Canada, which is a gluten-free bakery. In the past, when > we would order in the USA we would get it baked fresh and shipped, with all the gluten-free breads donuts, brownies, and even bread crumbs, everything was so delicious. They would even set up deals where one could do a trial package of several of their specials cost only $25.00. Today, due to many circumstances especially in the USA we currently have no choices but to purchase frozen. Who needs to eat frozen? So, we do not purchase them anymore. If you need to question more items or foods that you do not know > if gluten is contained, start reading your labels upon your purchase. > > The Celiac Foundation has many website for you to look into, as far as finding > foods that suit your needs. Everything has gluten contained, so if you have > been diagnosis with this, you will find out 2 things, you either have it, or > you have a sensitivity, which would also state to eliminate any white gluten, or > anything containing bleached wheat. If you live in an area that has a public > library, and you are a card holder, there are books in most public library > which contains recipes however, if you consume lunch meats all contain > nitrates and gluten and are very unhealthy to consume. > > Good luck on your endeavors in receiving your diagnosis from the testings, > and keep me posted on what is learned. > > Happiness comes in abundance! > Dory Doggie > > > > > > ________________________________ > From: Orenstein <scrappygirl123@...> > > Sent: Wednesday, February 4, 2009 8:34:30 AM > Subject: [ ] CEliac Disease > > > I have tested positive for celiac disease thru a blood test and will now > have an upper endoscopy next week. Does anyone know if Gleevec contains > glutens? I have e mailed Dr. Mauro, and am waiting his his reply. I just > thought that I woud throw the question out to all of you. > -- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Donna, I have been there and done that. Just keep your chin up and if this medication is not working for you they have another. I have been on three different ones, Gleevec, Sprycel and nowTasigna. And I am PCRU. I am glad your doctor iw wanting to do a BMA (I know they suck) at least y ou can be assured that he is watching out for you. I don't know how high or low or what it all means but I am sure someone will explain it to you. I am sure you will hear from Zavie. Or maybe they just need to increase the dosage. What are you taking and how much??? But please don't stress yourself out too much. I know I stressed out too!!! Aloha sharon _____ From: [mailto: ] On Behalf Of donnaberry99 Sent: Thursday, February 05, 2009 11:42 AM Subject: [ ] Results Hi Friends, I don't post much but I read all your posts every day on my phone I haven't just figured out how to post from my phone yet. I need some support just got my BCR/ABL results and they were 3.2 up from the last 1.9 I know we're not supposed to but I am freaking out!!!!!!! My oncologist has already suggested he wants to do a BMA...can they just bounce around this much??? I was so hoping to be PCRU I need your thought on this Donna x DX May 24, 2007 on Gleevec since 7/2007 > > , > > At least you know it could be Celiac, and this gluten problem plaques most > of us in the USA and especially in Europe. > > Most of our children in the USA who are obese, are children who have the > gluten problem, yet, most Physician, and or Pediatrics do not know that most > of the problems are due to our fatten processed foods in the USA products. > > My daughter and I have had this problem for many years, and I purchase > many varieties of gluten-free foods, from many gluten areas. What I found > utilizing gluten-free bread, pizza, and even pancake mixes, was there were > too much sugar or salt contained in the mixes, and if you buy each ingredient > separately and make your own homemade gluten-free products it is a trial > and error, because one needs to add more liquids in each batter, and or > substitute other things to enable one to consume them. > > As my daughter gets older, we found that most of the products we purchased in a box, was not necessary, as it was no longer important to consume how > schools set up pizza parties for every event. > > I hope you find an answer about Gleevec and if does contain gluten, please > email me and let me know? Someone once informed us on this site, a specific place where the ingredients of Gleevec could be found. Perhaps you could inquiry this through Tracey and or Lottie. > > I don't know where you live, however in Canada there is Kinmicnick Foods > from Montreal, Canada, which is a gluten-free bakery. In the past, when > we would order in the USA we would get it baked fresh and shipped, with all the gluten-free breads donuts, brownies, and even bread crumbs, everything was so delicious. They would even set up deals where one could do a trial package of several of their specials cost only $25.00. Today, due to many circumstances especially in the USA we currently have no choices but to purchase frozen. Who needs to eat frozen? So, we do not purchase them anymore. If you need to question more items or foods that you do not know > if gluten is contained, start reading your labels upon your purchase. > > The Celiac Foundation has many website for you to look into, as far as finding > foods that suit your needs. Everything has gluten contained, so if you have > been diagnosis with this, you will find out 2 things, you either have it, or > you have a sensitivity, which would also state to eliminate any white gluten, or > anything containing bleached wheat. If you live in an area that has a public > library, and you are a card holder, there are books in most public library > which contains recipes however, if you consume lunch meats all contain > nitrates and gluten and are very unhealthy to consume. > > Good luck on your endeavors in receiving your diagnosis from the testings, > and keep me posted on what is learned. > > Happiness comes in abundance! > Dory Doggie > > > > > > ________________________________ > From: Orenstein <scrappygirl123@...> > groups (DOT) <mailto:%40> com > Sent: Wednesday, February 4, 2009 8:34:30 AM > Subject: [ ] CEliac Disease > > > I have tested positive for celiac disease thru a blood test and will now > have an upper endoscopy next week. Does anyone know if Gleevec contains > glutens? I have e mailed Dr. Mauro, and am waiting his his reply. I just > thought that I woud throw the question out to all of you. > -- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2009 Report Share Posted February 6, 2009 Hi Donna, You don't have to freak out over this result. It takes 3 consecutive PCR results to establish a trend. Labs can and do bounce around. Make sure that you get your own personal copy of the results. They are very easy to compare. A half log difference is within the error range of the test. So, if your last PCR was 1.9, then results of 6.9 or 0.69 is within the error limit of the test. I guess that we can designate you as one of our turtles. You will have to come up with a nickname. The neat thing about our turtles is that they all cross the finish line. Getting to PCRU is nice but notnecessary. Less than 10% of patients achieve this. Stability is the goal. Zavie Zavie (age 70) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 e-mail: zmiller@... Tel: 613-726-1117 Tel: 561-429-3309 in Florida Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of donnaberry99 Sent: February-05-09 2:42 PM Subject: [ ] Results Hi Friends, I don't post much but I read all your posts every day on my phone I haven't just figured out how to post from my phone yet. I need some support just got my BCR/ABL results and they were 3.2 up from the last 1.9 I know we're not supposed to but I am freaking out!!!!!!! My oncologist has already suggested he wants to do a BMA...can they just bounce around this much??? I was so hoping to be PCRU I need your thought on this Donna x DX May 24, 2007 on Gleevec since 7/2007 > > , > > At least you know it could be Celiac, and this gluten problem plaques most > of us in the USA and especially in Europe. > > Most of our children in the USA who are obese, are children who have the > gluten problem, yet, most Physician, and or Pediatrics do not know that most > of the problems are due to our fatten processed foods in the USA products. > > My daughter and I have had this problem for many years, and I purchase > many varieties of gluten-free foods, from many gluten areas. What I found > utilizing gluten-free bread, pizza, and even pancake mixes, was there were > too much sugar or salt contained in the mixes, and if you buy each ingredient > separately and make your own homemade gluten-free products it is a trial > and error, because one needs to add more liquids in each batter, and or > substitute other things to enable one to consume them. > > As my daughter gets older, we found that most of the products we purchased in a box, was not necessary, as it was no longer important to consume how > schools set up pizza parties for every event. > > I hope you find an answer about Gleevec and if does contain gluten, please > email me and let me know? Someone once informed us on this site, a specific place where the ingredients of Gleevec could be found. Perhaps you could inquiry this through Tracey and or Lottie. > > I don't know where you live, however in Canada there is Kinmicnick Foods > from Montreal, Canada, which is a gluten-free bakery. In the past, when > we would order in the USA we would get it baked fresh and shipped, with all the gluten-free breads donuts, brownies, and even bread crumbs, everything was so delicious. They would even set up deals where one could do a trial package of several of their specials cost only $25.00. Today, due to many circumstances especially in the USA we currently have no choices but to purchase frozen. Who needs to eat frozen? So, we do not purchase them anymore. If you need to question more items or foods that you do not know > if gluten is contained, start reading your labels upon your purchase. > > The Celiac Foundation has many website for you to look into, as far as finding > foods that suit your needs. Everything has gluten contained, so if you have > been diagnosis with this, you will find out 2 things, you either have it, or > you have a sensitivity, which would also state to eliminate any white gluten, or > anything containing bleached wheat. If you live in an area that has a public > library, and you are a card holder, there are books in most public library > which contains recipes however, if you consume lunch meats all contain > nitrates and gluten and are very unhealthy to consume. > > Good luck on your endeavors in receiving your diagnosis from the testings, > and keep me posted on what is learned. > > Happiness comes in abundance! > Dory Doggie > > > > > > ________________________________ > From: Orenstein <scrappygirl123@...> > groups (DOT) <mailto:%40> com > Sent: Wednesday, February 4, 2009 8:34:30 AM > Subject: [ ] CEliac Disease > > > I have tested positive for celiac disease thru a blood test and will now > have an upper endoscopy next week. Does anyone know if Gleevec contains > glutens? I have e mailed Dr. Mauro, and am waiting his his reply. I just > thought that I woud throw the question out to all of you. > -- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2009 Report Share Posted February 6, 2009 Sorry if I missed this but did you have the test done by the same lab? Labs use different techniques and can cause significant differences in reported results. From: Zavie <zmiller@...> Subject: RE: [ ] Results Date: Thursday, February 5, 2009, 7:58 PM Hi Donna, You don't have to freak out over this result. It takes 3 consecutive PCR results to establish a trend. Labs can and do bounce around. Make sure that you get your own personal copy of the results. They are very easy to compare. A half log difference is within the error range of the test. So, if your last PCR was 1.9, then results of 6.9 or 0.69 is within the error limit of the test. I guess that we can designate you as one of our turtles. You will have to come up with a nickname. The neat thing about our turtles is that they all cross the finish line. Getting to PCRU is nice but notnecessary. Less than 10% of patients achieve this. Stability is the goal. Zavie Zavie (age 70) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 e-mail: zmillersympatico (DOT) ca Tel: 613-726-1117 Tel: 561-429-3309 in Florida Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of donnaberry99 Sent: February-05- 09 2:42 PM groups (DOT) com Subject: [ ] Results Hi Friends, I don't post much but I read all your posts every day on my phone I haven't just figured out how to post from my phone yet. I need some support just got my BCR/ABL results and they were 3.2 up from the last 1.9 I know we're not supposed to but I am freaking out!!!!!!! My oncologist has already suggested he wants to do a BMA...can they just bounce around this much??? I was so hoping to be PCRU I need your thought on this Donna x DX May 24, 2007 on Gleevec since 7/2007 > > , > > At least you know it could be Celiac, and this gluten problem plaques most > of us in the USA and especially in Europe. > > Most of our children in the USA who are obese, are children who have the > gluten problem, yet, most Physician, and or Pediatrics do not know that most > of the problems are due to our fatten processed foods in the USA products. > > My daughter and I have had this problem for many years, and I purchase > many varieties of gluten-free foods, from many gluten areas. What I found > utilizing gluten-free bread, pizza, and even pancake mixes, was there were > too much sugar or salt contained in the mixes, and if you buy each ingredient > separately and make your own homemade gluten-free products it is a trial > and error, because one needs to add more liquids in each batter, and or > substitute other things to enable one to consume them. > > As my daughter gets older, we found that most of the products we purchased in a box, was not necessary, as it was no longer important to consume how > schools set up pizza parties for every event. > > I hope you find an answer about Gleevec and if does contain gluten, please > email me and let me know? Someone once informed us on this site, a specific place where the ingredients of Gleevec could be found. Perhaps you could inquiry this through Tracey and or Lottie. > > I don't know where you live, however in Canada there is Kinmicnick Foods > from Montreal, Canada, which is a gluten-free bakery. In the past, when > we would order in the USA we would get it baked fresh and shipped, with all the gluten-free breads donuts, brownies, and even bread crumbs, everything was so delicious. They would even set up deals where one could do a trial package of several of their specials cost only $25.00. Today, due to many circumstances especially in the USA we currently have no choices but to purchase frozen. Who needs to eat frozen? So, we do not purchase them anymore. If you need to question more items or foods that you do not know > if gluten is contained, start reading your labels upon your purchase. > > The Celiac Foundation has many website for you to look into, as far as finding > foods that suit your needs. Everything has gluten contained, so if you have > been diagnosis with this, you will find out 2 things, you either have it, or > you have a sensitivity, which would also state to eliminate any white gluten, or > anything containing bleached wheat. If you live in an area that has a public > library, and you are a card holder, there are books in most public library > which contains recipes however, if you consume lunch meats all contain > nitrates and gluten and are very unhealthy to consume. > > Good luck on your endeavors in receiving your diagnosis from the testings, > and keep me posted on what is learned. > > Happiness comes in abundance! > Dory Doggie > > > > > > ____________ _________ _________ __ > From: Orenstein <scrappygirl123@ ...> > groups (DOT) <mailto:% 40groups. com> com > Sent: Wednesday, February 4, 2009 8:34:30 AM > Subject: [ ] CEliac Disease > > > I have tested positive for celiac disease thru a blood test and will now > have an upper endoscopy next week. Does anyone know if Gleevec contains > glutens? I have e mailed Dr. Mauro, and am waiting his his reply. I just > thought that I woud throw the question out to all of you. > -- > > > Quote Link to comment Share on other sites More sharing options...
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