Guest guest Posted January 5, 2010 Report Share Posted January 5, 2010 Hello everyone, Wanted to send a message to see if anyone has been given specific nutritional information guidelines to follow? Has anyone been advised to see a nutritionist by their Oncologist? The only guidelines that I have been given are no alcohol. As always all input is appreciated. Thanks, Danny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2010 Report Share Posted January 5, 2010 Hi Danny, The only nutritional no no that I know about is grapefruit juice or grapefruits. Alcohol is not a complete no no. A glass of wine once in a while is OK. Because bot Gleevec and alcohol are processed by the liver, it puts a strain on it. I believe that the grapefruit affects your boby by enhancing the effect of Gleevec. Zavie Zavie (age 71) 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 3.7 log reduction Jan/09 3.8 log reduction May/09 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of ddobrzenski Sent: January-04-10 8:31 PM Subject: [ ] CML & Nutrition Hello everyone, Wanted to send a message to see if anyone has been given specific nutritional information guidelines to follow? Has anyone been advised to see a nutritionist by their Oncologist? The only guidelines that I have been given are no alcohol. As always all input is appreciated. Thanks, Danny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2010 Report Share Posted January 5, 2010 In addition to no grapefruits or grapefruit juice I was told no blood oranges or pommegranates. Sent from my iPhone On Jan 4, 2010, at 9:25 PM, " Zavie " <zmiller@...> wrote: Hi Danny, The only nutritional no no that I know about is grapefruit juice or grapefruits. Alcohol is not a complete no no. A glass of wine once in a while is OK. Because bot Gleevec and alcohol are processed by the liver, it puts a strain on it. I believe that the grapefruit affects your boby by enhancing the effect of Gleevec. Zavie Zavie (age 71) 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 3.7 log reduction Jan/09 3.8 log reduction May/09 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of ddobrzenski Sent: January-04-10 8:31 PM Subject: [ ] CML & Nutrition Hello everyone, Wanted to send a message to see if anyone has been given specific nutritional information guidelines to follow? Has anyone been advised to see a nutritionist by their Oncologist? The only guidelines that I have been given are no alcohol. As always all input is appreciated. Thanks, Danny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2010 Report Share Posted January 5, 2010 Wow, no one every told me that we are suppose to lay off the alcohol. That probably explains why I became a bit of a light weight post Gleevec. [ ] CML & Nutrition Hello everyone, Wanted to send a message to see if anyone has been given specific nutritional information guidelines to follow? Has anyone been advised to see a nutritionist by their Oncologist? The only guidelines that I have been given are no alcohol. As always all input is appreciated. Thanks, Danny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Hi Danny, In the past before Gleevec, I was on Interferon, a horrible Chemotherapy. I became an Anorexia on this and the WRONG antibiotic. I had lost much muscle as it was being wasted away by antibiotics and Chemotherapy. I became a sack of skin and bones! My current Oncologist suggested I make a visit with a hospital dietitian, to discuss how I was going to gain the proper weight, and what type of foods would help me without the fats or sugar added. It was a good investment and it didn't cost me a dime, and or they didn't need health insurance either. I received some rather valuable resources, and knowledge from this young women who helped me gain the right weight in 2 years! Dory Doggie ________________________________ From: ddobrzenski <ddobrzenski@...> Sent: Mon, January 4, 2010 7:30:58 PM Subject: [ ] CML & Nutrition Hello everyone, Wanted to send a message to see if anyone has been given specific nutritional information guidelines to follow? Has anyone been advised to see a nutritionist by their Oncologist? The only guidelines that I have been given are no alcohol. As always all input is appreciated. Thanks, Danny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 I am kinda lost where this is concerned too... the only thing they told me was absolutely no grapefruit/grapefruit juice and no alcohol Cheryl > > Hi Danny, > > In the past before Gleevec, I was on Interferon, a horrible Chemotherapy. I became an Anorexia on this > and the WRONG antibiotic. I had lost much muscle as it was being wasted away by antibiotics and Chemotherapy. > I became a sack of skin and bones! My current Oncologist suggested I make a visit with a hospital dietitian, > to discuss how I was going to gain the proper weight, and what type of foods would help me without the fats > or sugar added. It was a good investment and it didn't cost me a dime, and or they didn't need health insurance > either. I received some rather valuable resources, and knowledge from this young women who helped me gain > the right weight in 2 years! > > Dory Doggie > > > > > > ________________________________ > From: ddobrzenski <ddobrzenski@...> > > Sent: Mon, January 4, 2010 7:30:58 PM > Subject: [ ] CML & Nutrition > > > Hello everyone, > > Wanted to send a message to see if anyone has been given specific nutritional information guidelines to follow? Has anyone been advised to see a nutritionist by their Oncologist? The only guidelines that I have been given are no alcohol. > > As always all input is appreciated. > > Thanks, > Danny > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Happy New Year all. I've been reading everyone's mails and wish everyone a successful and most importantly happy 2010. For me, new challenges I never began to dream of this time last year include helping fight the ludicrous situation in the UK which currently means nilotinib and dasatinib are NOT currently recommended to be available as secondline therapy in England but are in Scotland and Wales, and becoming a fund raiser for Leukaemia charities -  to put something back and say " thanks " for all the work clinicians and others have done and will do in the fight against Leukaemia.. I would be in a very different place without it I know. The nutrition discussion interested me - the only no-no I was given when prescribed imatinib last May was grapefruit/grapefruit juice. Everything else was OK (I've read about Seville oranges so I avoid marmalade probably unnecessarily). My Spanish consultant spotted the wine lover in me and specifically said alcohol was ok. To be honest for several months I hardly felt like it at all and though I do have a glass of wine say every other day or so with dinner now I have greatly cut back and never feel like it at all after taking my pill.  I have also had acid reflux for years and Glivec certainly makes that worse. Been told I can take low dose omeprazole for that which sometimes I do (at the opposite end of the day to Glivec) but am reluctant to become reliant on it unless I have to (it is brilliant though). Any other reflux/indigestion sufferers out there with suggestions for this? What have their doctors prescribed? I hate the standard antacid " chalk " tabs. Incidentally, I now know I have the rare e14a3 transcript variant about which I can find very little but seems to explain my wbc of only 11 at dx but platelets of over 1100, and no spleen enlargement at all. To those newly dx'd concerned about response times, I was told all along that late responses are increasingly seen so not to worry - much easier said than done I know. Key thing is to do mutation analysis if response seems slow to make sure a change in drug isn't necessary/advisable as the sooner that's done the better if it is. dx May 09.  83% bcr/abl ratio at dx imatinib/glivec May 09 1 log reduction July 09 3 log reduction Sept 09 undetectable Nov 09 ________________________________ From: thornton_cheryl <thornton_cheryl@...> Sent: Wed, January 6, 2010 12:28:42 PM Subject: Re: [ ] CML & Nutrition  I am kinda lost where this is concerned too... the only thing they told me was absolutely no grapefruit/grapefru it juice and no alcohol Cheryl > > Hi Danny, > > In the past before Gleevec, I was on Interferon, a horrible Chemotherapy. I became an Anorexia on this > and the WRONG antibiotic. I had lost much muscle as it was being wasted away by antibiotics and Chemotherapy. > I became a sack of skin and bones! My current Oncologist suggested I make a visit with a hospital dietitian, > to discuss how I was going to gain the proper weight, and what type of foods would help me without the fats > or sugar added. It was a good investment and it didn't cost me a dime, and or they didn't need health insurance > either. I received some rather valuable resources, and knowledge from this young women who helped me gain > the right weight in 2 years! > > Dory Doggie > > > > > > ____________ _________ _________ __ > From: ddobrzenski <ddobrzenski@ ...> > groups (DOT) com > Sent: Mon, January 4, 2010 7:30:58 PM > Subject: [ ] CML & Nutrition > > > Hello everyone, > > Wanted to send a message to see if anyone has been given specific nutritional information guidelines to follow? Has anyone been advised to see a nutritionist by their Oncologist? The only guidelines that I have been given are no alcohol. > > As always all input is appreciated. > > Thanks, > Danny > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 About acid reflux. I stopped drinking about 4-5 cups of tea a day and have had fewer problems with it. Also no chocolate, and drink decaf coffee and tea, yuck! . But I am not on Gleevec, i am on Ariad. Bobby a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years o2/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 #840 Zavie's Zero Club From: Willoughby <willoughbyr@...> Subject: Re: [ ] CML & Nutrition Date: Wednesday, January 6, 2010, 9:41 AM  Happy New Year all. I've been reading everyone's mails and wish everyone a successful and most importantly happy 2010. For me, new challenges I never began to dream of this time last year include helping fight the ludicrous situation in the UK which currently means nilotinib and dasatinib are NOT currently recommended to be available as secondline therapy in England but are in Scotland and Wales, and becoming a fund raiser for Leukaemia charities -  to put something back and say " thanks " for all the work clinicians and others have done and will do in the fight against Leukaemia.. I would be in a very different place without it I know. The nutrition discussion interested me - the only no-no I was given when prescribed imatinib last May was grapefruit/grapefru it juice. Everything else was OK (I've read about Seville oranges so I avoid marmalade probably unnecessarily) . My Spanish consultant spotted the wine lover in me and specifically said alcohol was ok. To be honest for several months I hardly felt like it at all and though I do have a glass of wine say every other day or so with dinner now I have greatly cut back and never feel like it at all after taking my pill.  I have also had acid reflux for years and Glivec certainly makes that worse. Been told I can take low dose omeprazole for that which sometimes I do (at the opposite end of the day to Glivec) but am reluctant to become reliant on it unless I have to (it is brilliant though). Any other reflux/indigestion sufferers out there with suggestions for this? What have their doctors prescribed? I hate the standard antacid " chalk " tabs. Incidentally, I now know I have the rare e14a3 transcript variant about which I can find very little but seems to explain my wbc of only 11 at dx but platelets of over 1100, and no spleen enlargement at all. To those newly dx'd concerned about response times, I was told all along that late responses are increasingly seen so not to worry - much easier said than done I know. Key thing is to do mutation analysis if response seems slow to make sure a change in drug isn't necessary/advisable as the sooner that's done the better if it is. dx May 09.  83% bcr/abl ratio at dx imatinib/glivec May 09 1 log reduction July 09 3 log reduction Sept 09 undetectable Nov 09 ____________ _________ _________ __ From: thornton_cheryl <thornton_cheryl@ .ca> groups (DOT) com Sent: Wed, January 6, 2010 12:28:42 PM Subject: Re: [ ] CML & Nutrition  I am kinda lost where this is concerned too... the only thing they told me was absolutely no grapefruit/grapefru it juice and no alcohol Cheryl > > Hi Danny, > > In the past before Gleevec, I was on Interferon, a horrible Chemotherapy. I became an Anorexia on this > and the WRONG antibiotic. I had lost much muscle as it was being wasted away by antibiotics and Chemotherapy. > I became a sack of skin and bones! My current Oncologist suggested I make a visit with a hospital dietitian, > to discuss how I was going to gain the proper weight, and what type of foods would help me without the fats > or sugar added. It was a good investment and it didn't cost me a dime, and or they didn't need health insurance > either. I received some rather valuable resources, and knowledge from this young women who helped me gain > the right weight in 2 years! > > Dory Doggie > > > > > > ____________ _________ _________ __ > From: ddobrzenski <ddobrzenski@ ...> > groups (DOT) com > Sent: Mon, January 4, 2010 7:30:58 PM > Subject: [ ] CML & Nutrition > > > Hello everyone, > > Wanted to send a message to see if anyone has been given specific nutritional information guidelines to follow? Has anyone been advised to see a nutritionist by their Oncologist? The only guidelines that I have been given are no alcohol. > > As always all input is appreciated. > > Thanks, > Danny > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 I think interferon (my husband calls it an evil drug. I was on it in 1999) is actually classified as an immunotherapy drug. It is not chemo. On the other hand gleevec,sprycel, tasigna are chemo. Sent from my iPhone On Jan 6, 2010, at 3:24 AM, Dory Doggie <hellodoggie0009@...> wrote: Hi Danny, In the past before Gleevec, I was on Interferon, a horrible Chemotherapy. I became an Anorexia on this and the WRONG antibiotic. I had lost much muscle as it was being wasted away by antibiotics and Chemotherapy. I became a sack of skin and bones! My current Oncologist suggested I make a visit with a hospital dietitian, to discuss how I was going to gain the proper weight, and what type of foods would help me without the fats or sugar added. It was a good investment and it didn't cost me a dime, and or they didn't need health insurance either. I received some rather valuable resources, and knowledge from this young women who helped me gain the right weight in 2 years! Dory Doggie ________________________________ From: ddobrzenski <ddobrzenski@...> Sent: Mon, January 4, 2010 7:30:58 PM Subject: [ ] CML & Nutrition Hello everyone, Wanted to send a message to see if anyone has been given specific nutritional information guidelines to follow? Has anyone been advised to see a nutritionist by their Oncologist? The only guidelines that I have been given are no alcohol. As always all input is appreciated. Thanks, Danny Quote Link to comment Share on other sites More sharing options...
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