Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 i will start gleevec on 10 feb 2010, what exactly effect from gleevec...can i be like a normal person...working and have a normal life???????what should i eat and not to eat????? ________________________________ From: Lottie Duthu <lotajam@...> CML < > Sent: Saturday, 30 January 2010 2:30:19 Subject: [ ] New Member Faiz  Dear Faiz, You certainly are welcome to join our group if you are a CML patient. We have new members and members who have been subscribed for many years. Ask any question and someone will respond to help you understand the disease of CML and help you to read your CBC. Go ahead and ask your questions. Hands & hearts, Lottie Duthu Diagnosed July, 1996 at age 67 eached CCR December, 2009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Faiz Welcome. You will get lots of answers to this post and experiences differ, so I will only give you mine. I was Dx May 28 09 and Gleevec the next day. The response I've had was excellent. Side effects - I had a little nausea from Gleevec for the first 4-5 weeks until I found what - for me - was the best time to take it, which was about an hour after my evening meal (which needs to be a proper meal not a small snack). Once I discovered that, I found for me at least, no nausea. You can experiment with what works for you. Other effects - " gastro intestinal turbulence " and cramps were minor and more or less gone now. Many people find the side effects reduce over time but your doctor will explain. Only remaining side effect is indigestion - which I deal with using basic indigestion relief. I never stopped work though I slowed down a bit (to get over the Dx) though full time again now. Only thing definitely not to eat (I was told) was grapefruit or grapefruit juice. I also avoid anything too spicy (because of my indigestion) - shame because I like spicy food, or at least I used to! Good luck - have confidence. ________________________________ From: norfaizah mohd anuar <kelincing@...> Sent: Thu, February 4, 2010 5:15:56 AM Subject: Re: [ ] New Member Faiz  i will start gleevec on 10 feb 2010, what exactly effect from gleevec...can i be like a normal person...working and have a normal life?? ?????what should i eat and not to eat????? ____________ _________ _________ __ From: Lottie Duthu <lotajamcomcast (DOT) net> CML <groups (DOT) com> Sent: Saturday, 30 January 2010 2:30:19 Subject: [ ] New Member Faiz  Dear Faiz, You certainly are welcome to join our group if you are a CML patient. We have new members and members who have been subscribed for many years. Ask any question and someone will respond to help you understand the disease of CML and help you to read your CBC. Go ahead and ask your questions. Hands & hearts, Lottie Duthu Diagnosed July, 1996 at age 67 eached CCR December, 2009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Hi Faiz, just to add a little to what said, it is not good to lie down for at least half an hour after taking Gleevec. For me it was better to split the dose and I took it with a full meal, never a light one, as I would have sever nausea. It took me about 2 months to adjust to it, and I started on 600mg., as I was in trial for Gleevec, and at that time it was 600. Good luck, it just takes some adjusting and you will learn to live with it easily. I have had cml for 15 years, and although I am no longer on Gleevec, it is the drug that saved my life. 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: [ ] New Member Faiz Date: Thursday, February 4, 2010, 2:00 AM  Faiz Welcome. You will get lots of answers to this post and experiences differ, so I will only give you mine. I was Dx May 28 09 and Gleevec the next day. The response I've had was excellent. Side effects - I had a little nausea from Gleevec for the first 4-5 weeks until I found what - for me - was the best time to take it, which was about an hour after my evening meal (which needs to be a proper meal not a small snack). Once I discovered that, I found for me at least, no nausea. You can experiment with what works for you. Other effects - " gastro intestinal turbulence " and cramps were minor and more or less gone now. Many people find the side effects reduce over time but your doctor will explain. Only remaining side effect is indigestion - which I deal with using basic indigestion relief. I never stopped work though I slowed down a bit (to get over the Dx) though full time again now. Only thing definitely not to eat (I was told) was grapefruit or grapefruit juice. I also avoid anything too spicy (because of my indigestion) - shame because I like spicy food, or at least I used to! Good luck - have confidence. ____________ _________ _________ __ From: norfaizah mohd anuar <kelincing (DOT) com.my> groups (DOT) com Sent: Thu, February 4, 2010 5:15:56 AM Subject: Re: [ ] New Member Faiz  i will start gleevec on 10 feb 2010, what exactly effect from gleevec...can i be like a normal person...working and have a normal life?? ?????what should i eat and not to eat????? ____________ _________ _________ __ From: Lottie Duthu <lotajamcomcast (DOT) net> CML <groups (DOT) com> Sent: Saturday, 30 January 2010 2:30:19 Subject: [ ] New Member Faiz  Dear Faiz, You certainly are welcome to join our group if you are a CML patient. We have new members and members who have been subscribed for many years. Ask any question and someone will respond to help you understand the disease of CML and help you to read your CBC. Go ahead and ask your questions. Hands & hearts, Lottie Duthu Diagnosed July, 1996 at age 67 eached CCR December, 2009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Faiz, Another thing I'd like to add is that you (we) should consume NO alcohol on Gleevec.  There cannot be any other strain on our liver. Danny -- Sent from my Palm Prē Willoughby wrote:  Faiz Welcome. You will get lots of answers to this post and experiences differ, so I will only give you mine. I was Dx May 28 09 and Gleevec the next day. The response I've had was excellent. Side effects - I had a little nausea from Gleevec for the first 4-5 weeks until I found what - for me - was the best time to take it, which was about an hour after my evening meal (which needs to be a proper meal not a small snack). Once I discovered that, I found for me at least, no nausea. You can experiment with what works for you. Other effects - " gastro intestinal turbulence " and cramps were minor and more or less gone now. Many people find the side effects reduce over time but your doctor will explain. Only remaining side effect is indigestion - which I deal with using basic indigestion relief. I never stopped work though I slowed down a bit (to get over the Dx) though full time again now. Only thing definitely not to eat (I was told) was grapefruit or grapefruit juice. I also avoid anything too spicy (because of my indigestion) - shame because I like spicy food, or at least I used to! Good luck - have confidence. ________________________________ From: norfaizah mohd anuar & lt;kelincing@...> Sent: Thu, February 4, 2010 5:15:56 AM Subject: Re: [ ] New Member Faiz  i will start gleevec on 10 feb 2010, what exactly effect from gleevec...can i be like a normal person...working and have a normal life?? ?????what should i eat and not to eat????? ____________ _________ _________ __ From: Lottie Duthu & lt;lotajamcomcast (DOT) net> CML & lt;groups (DOT) com> Sent: Saturday, 30 January 2010 2:30:19 Subject: [ ] New Member Faiz  Dear Faiz, You certainly are welcome to join our group if you are a CML patient. We have new members and members who have been subscribed for many years. Ask any question and someone will respond to help you understand the disease of CML and help you to read your CBC. Go ahead and ask your questions. Hands & amp; hearts, Lottie Duthu Diagnosed July, 1996 at age 67 eached CCR December, 2009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 danny, thank you to sharing about your own experience..i will try my best to follow the rules starting the day i take gleevec..i like spicy food so im not sure what will happen after this and grapefruit is not a grape right? but now im be worried about rash..now i have a rash all body and i been read others experience that when they take gleevec they have bad rash on their body...so im not sure if my rash will more worse when i take gleevec... i also taking my dinner on 7pm everyday...so do you think is it ok if i take gleevec on that time? i will be strong 4 my family and my only daughter... ________________________________ From: Danny Dobrzenski <ddobrzenski@...> " " < > Sent: Thursday, 4 February 2010 10:38:35 Subject: Re: [ ] New Member Faiz  Faiz, Another thing I'd like to add is that you (we) should consume NO alcohol on Gleevec.  There cannot be any other strain on our liver. Danny -- Sent from my Palm Prē Willoughby wrote:  Faiz Welcome. You will get lots of answers to this post and experiences differ, so I will only give you mine. I was Dx May 28 09 and Gleevec the next day. The response I've had was excellent. Side effects - I had a little nausea from Gleevec for the first 4-5 weeks until I found what - for me - was the best time to take it, which was about an hour after my evening meal (which needs to be a proper meal not a small snack). Once I discovered that, I found for me at least, no nausea. You can experiment with what works for you. Other effects - " gastro intestinal turbulence " and cramps were minor and more or less gone now. Many people find the side effects reduce over time but your doctor will explain. Only remaining side effect is indigestion - which I deal with using basic indigestion relief. I never stopped work though I slowed down a bit (to get over the Dx) though full time again now. Only thing definitely not to eat (I was told) was grapefruit or grapefruit juice. I also avoid anything too spicy (because of my indigestion) - shame because I like spicy food, or at least I used to! Good luck - have confidence. ____________ _________ _________ __ From: norfaizah mohd anuar & lt;kelincing (DOT) com.my> groups (DOT) com Sent: Thu, February 4, 2010 5:15:56 AM Subject: Re: [ ] New Member Faiz  i will start gleevec on 10 feb 2010, what exactly effect from gleevec...can i be like a normal person...working and have a normal life?? ?????what should i eat and not to eat????? ____________ _________ _________ __ From: Lottie Duthu & lt;lotajam@ comcast. net> CML & lt;@group s. com> Sent: Saturday, 30 January 2010 2:30:19 Subject: [ ] New Member Faiz  Dear Faiz, You certainly are welcome to join our group if you are a CML patient. We have new members and members who have been subscribed for many years. Ask any question and someone will respond to help you understand the disease of CML and help you to read your CBC. Go ahead and ask your questions. Hands & amp; hearts, Lottie Duthu Diagnosed July, 1996 at age 67 eached CCR December, 2009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 hai bobby..thank you 4 your advice...i will try to use the advice 4 my guide during the early week of taking the gleevec..bobby u said that u already 15years had cml..is it cml cant gone 4ever??they said we cant have a baby also if we have cml?is it true...is it so bad about this cml?if i have a cramps what should i do?can i do something to prevent the cramps? ________________________________ From: ROBERTA DOYLE <rcd1929@...> Sent: Thursday, 4 February 2010 8:48:43 Subject: Re: [ ] New Member Faiz  Hi Faiz, just to add a little to what said, it is not good to lie down for at least half an hour after taking Gleevec. For me it was better to split the dose and I took it with a full meal, never a light one, as I would have sever nausea. It took me about 2 months to adjust to it, and I started on 600mg., as I was in trial for Gleevec, and at that time it was 600. Good luck, it just takes some adjusting and you will learn to live with it easily. I have had cml for 15 years, and although I am no longer on Gleevec, it is the drug that saved my life. 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@ ymail.com> Subject: Re: [ ] New Member Faiz groups (DOT) com Date: Thursday, February 4, 2010, 2:00 AM  Faiz Welcome. You will get lots of answers to this post and experiences differ, so I will only give you mine. I was Dx May 28 09 and Gleevec the next day. The response I've had was excellent. Side effects - I had a little nausea from Gleevec for the first 4-5 weeks until I found what - for me - was the best time to take it, which was about an hour after my evening meal (which needs to be a proper meal not a small snack). Once I discovered that, I found for me at least, no nausea. You can experiment with what works for you. Other effects - " gastro intestinal turbulence " and cramps were minor and more or less gone now. Many people find the side effects reduce over time but your doctor will explain. Only remaining side effect is indigestion - which I deal with using basic indigestion relief. I never stopped work though I slowed down a bit (to get over the Dx) though full time again now. Only thing definitely not to eat (I was told) was grapefruit or grapefruit juice. I also avoid anything too spicy (because of my indigestion) - shame because I like spicy food, or at least I used to! Good luck - have confidence. ____________ _________ _________ __ From: norfaizah mohd anuar <kelincing (DOT) com.my> groups (DOT) com Sent: Thu, February 4, 2010 5:15:56 AM Subject: Re: [ ] New Member Faiz  i will start gleevec on 10 feb 2010, what exactly effect from gleevec...can i be like a normal person...working and have a normal life?? ?????what should i eat and not to eat????? ____________ _________ _________ __ From: Lottie Duthu <lotajamcomcast (DOT) net> CML <groups (DOT) com> Sent: Saturday, 30 January 2010 2:30:19 Subject: [ ] New Member Faiz  Dear Faiz, You certainly are welcome to join our group if you are a CML patient. We have new members and members who have been subscribed for many years. Ask any question and someone will respond to help you understand the disease of CML and help you to read your CBC. Go ahead and ask your questions. Hands & hearts, Lottie Duthu Diagnosed July, 1996 at age 67 eached CCR December, 2009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 Dear Faiz, there are several people on our site who are on gleevec and have had babies. But you will have to go by the advice of your doctor after you see how you are doing on the drug. There is no cure for our disease, with the exception of a bone marrow transplant, and your doctor would not suggest one unless you were very very sick. The new medicines today are helping most of us live a long and productive life. there is a young man in this group that climbs mountains, and goes skiing. There are women who have had babies. After you get over the initial shock of finding out you have CML you will get down to normal living and enjoy your life again. One of our members has had CML for over 34 years ! I am sure most of us are thankful we have CML instead of some other dreaded cancer such as lung or bone or brain cancer. It does take time however to learn to live with some of the drugs. As for cramps, some say drink tonic water, and I think perhaps add more calcium to your diet? It has been a while since I was on gleevec and had cramps, so I really don't remember what others do for them. but someone will let you know, and have faith, your life will get better, and you will enjoy your family a very long time. Good luck, Bobby a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 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. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 11/2009 PCR 0.034 #840 Zavie's Zero Club From: Willoughby <willoughbyr@ ymail.com> Subject: Re: [ ] New Member Faiz groups (DOT) com Date: Thursday, February 4, 2010, 2:00 AM  Faiz Welcome. You will get lots of answers to this post and experiences differ, so I will only give you mine. I was Dx May 28 09 and Gleevec the next day. The response I've had was excellent. Side effects - I had a little nausea from Gleevec for the first 4-5 weeks until I found what - for me - was the best time to take it, which was about an hour after my evening meal (which needs to be a proper meal not a small snack). Once I discovered that, I found for me at least, no nausea. You can experiment with what works for you. Other effects - " gastro intestinal turbulence " and cramps were minor and more or less gone now. Many people find the side effects reduce over time but your doctor will explain. Only remaining side effect is indigestion - which I deal with using basic indigestion relief. I never stopped work though I slowed down a bit (to get over the Dx) though full time again now. Only thing definitely not to eat (I was told) was grapefruit or grapefruit juice. I also avoid anything too spicy (because of my indigestion) - shame because I like spicy food, or at least I used to! Good luck - have confidence. ____________ _________ _________ __ From: norfaizah mohd anuar <kelincing (DOT) com.my> groups (DOT) com Sent: Thu, February 4, 2010 5:15:56 AM Subject: Re: [ ] New Member Faiz  i will start gleevec on 10 feb 2010, what exactly effect from gleevec...can i be like a normal person...working and have a normal life?? ?????what should i eat and not to eat????? ____________ _________ _________ __ From: Lottie Duthu <lotajamcomcast (DOT) net> CML <groups (DOT) com> Sent: Saturday, 30 January 2010 2:30:19 Subject: [ ] New Member Faiz  Dear Faiz, You certainly are welcome to join our group if you are a CML patient. We have new members and members who have been subscribed for many years. Ask any question and someone will respond to help you understand the disease of CML and help you to read your CBC. Go ahead and ask your questions. Hands & hearts, Lottie Duthu Diagnosed July, 1996 at age 67 eached CCR December, 2009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 Dear Faiz, I've been diagnosed with CML in my 4th pregnancy at 22 weeks. I'm 39 weeks pregnant right now and impatiently awaiting the birth of my baby (a natural birth and at home!). You can read more on my blog by clicking here: http://onephotographaday.wordpress.com/pregnancy-and-cml/ I'll answer any questions you might have. I'll be posting more on my blog about the whole experience. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 > > hai bobby..thank you 4 your advice...i will try to use the advice 4 my guide during the early week of taking the gleevec..bobby u said that u already 15years had cml..is it cml cant gone 4ever??they said we cant have a baby also if we have cml?is it true...is it so bad about this cml?if i have a cramps what should i do?can i do something to prevent the cramps? _____________________________ Hi Faiz, I am not Bobby, but I have had cml for 11.5 years. CML cannot yet be cured, so you need to stay on your medication forever, right now. The medication puts the disease in a stable remission but if you stopped the drug, the disease is still there and becomes a problem again. Men with CML can safely father children......the do advise women with cml to not get pregnant. No everyone gets cramps......but it can help if you take some calcium with magnesium........or drink tonic water. Everyone is different about what side effects they get and the severity......so let the list know what problems you are having once you start the drug and we can probably help with some suggestions. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2010 Report Share Posted February 6, 2010 hai nancy..sory..im though is bobby...thank you 4 your advice...i will try to prepare 4 any side effect..so i will have cml 4 my entire life...so i cant pregnant anymore... ________________________________ From: hey00nanc <ncogan@...> Sent: Saturday, 6 February 2010 4:01:59 Subject: Re: [ ] New Member Faiz  > > hai bobby..thank you 4 your advice...i will try to use the advice 4 my guide during the early week of taking the gleevec..bobby u said that u already 15years had cml..is it cml cant gone 4ever??they said we cant have a baby also if we have cml?is it true...is it so bad about this cml?if i have a cramps what should i do?can i do something to prevent the cramps? ____________ _________ ________ Hi Faiz, I am not Bobby, but I have had cml for 11.5 years. CML cannot yet be cured, so you need to stay on your medication forever, right now. The medication puts the disease in a stable remission but if you stopped the drug, the disease is still there and becomes a problem again. Men with CML can safely father children.... ..the do advise women with cml to not get pregnant. No everyone gets cramps...... but it can help if you take some calcium with magnesium... .....or drink tonic water. Everyone is different about what side effects they get and the severity.... ..so let the list know what problems you are having once you start the drug and we can probably help with some suggestions. C. ________________________________________________________________________________\ _________ Design your own exclusive Pingbox today! It's easy to create your personal chat space on your blogs. http://my.messenger./pingbox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2010 Report Share Posted February 6, 2010 hi bobby..thanks a lots 4 your story..its makes me feel better right now..i will go on my life..i will be strong and continue my life 4 my family and my  little girl and i will never give up..i will follow any advice and i hope i will be strong and i hope i can hide any pain from my parents coz i dont want them to be sad coz of me..i alwaz be strong person infront of them..i dont want to let them down..CML is not end of my life..i still have dream to futher study,i hope my dream will come true one day..i alwaz make people laugh and smile, now i still want to make people laugh and alwaz laugh as long as their with me..i dont want to be sad anymore..life must go on since people said that CML cant be cure..so i will go on with what i plan 4 my self and my family especially 4 my daughter..wish me best of luck... ;-) ________________________________ From: ROBERTA DOYLE <rcd1929@...> Sent: Friday, 5 February 2010 10:03:00 Subject: Re: [ ] New Member Faiz  Dear Faiz, there are several people on our site who are on gleevec and have had babies. But you will have to go by the advice of your doctor after you see how you are doing on the drug. There is no cure for our disease, with the exception of a bone marrow transplant, and your doctor would not suggest one unless you were very very sick. The new medicines today are helping most of us live a long and productive life. there is a young man in this group that climbs mountains, and goes skiing. There are women who have had babies. After you get over the initial shock of finding out you have CML you will get down to normal living and enjoy your life again. One of our members has had CML for over 34 years ! I am sure most of us are thankful we have CML instead of some other dreaded cancer such as lung or bone or brain cancer. It does take time however to learn to live with some of the drugs. As for cramps, some say drink tonic water, and I think perhaps add more calcium to your diet? It has been a while since I was on gleevec and had cramps, so I really don't remember what others do for them. but someone will let you know, and have faith, your life will get better, and you will enjoy your family a very long time. Good luck, Bobby a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 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. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 11/2009 PCR 0.034 #840 Zavie's Zero Club From: Willoughby <willoughbyr@ ymail.com> Subject: Re: [ ] New Member Faiz groups (DOT) com Date: Thursday, February 4, 2010, 2:00 AM  Faiz Welcome. You will get lots of answers to this post and experiences differ, so I will only give you mine. I was Dx May 28 09 and Gleevec the next day. The response I've had was excellent. Side effects - I had a little nausea from Gleevec for the first 4-5 weeks until I found what - for me - was the best time to take it, which was about an hour after my evening meal (which needs to be a proper meal not a small snack). Once I discovered that, I found for me at least, no nausea. You can experiment with what works for you. Other effects - " gastro intestinal turbulence " and cramps were minor and more or less gone now. Many people find the side effects reduce over time but your doctor will explain. Only remaining side effect is indigestion - which I deal with using basic indigestion relief. I never stopped work though I slowed down a bit (to get over the Dx) though full time again now. Only thing definitely not to eat (I was told) was grapefruit or grapefruit juice. I also avoid anything too spicy (because of my indigestion) - shame because I like spicy food, or at least I used to! Good luck - have confidence. ____________ _________ _________ __ From: norfaizah mohd anuar <kelincing (DOT) com.my> groups (DOT) com Sent: Thu, February 4, 2010 5:15:56 AM Subject: Re: [ ] New Member Faiz  i will start gleevec on 10 feb 2010, what exactly effect from gleevec...can i be like a normal person...working and have a normal life?? ?????what should i eat and not to eat????? ____________ _________ _________ __ From: Lottie Duthu <lotajamcomcast (DOT) net> CML <groups (DOT) com> Sent: Saturday, 30 January 2010 2:30:19 Subject: [ ] New Member Faiz  Dear Faiz, You certainly are welcome to join our group if you are a CML patient. We have new members and members who have been subscribed for many years. Ask any question and someone will respond to help you understand the disease of CML and help you to read your CBC. Go ahead and ask your questions. Hands & hearts, Lottie Duthu Diagnosed July, 1996 at age 67 eached CCR December, 2009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2010 Report Share Posted February 6, 2010 Hi Faiz that is a great attitude. You will find, after a couple of months and you get used to your " new life " , it does not have to be any different that your " old " life. Most of us still do everything we did before, travel, exercise, garden, dance, and under careful guidance from your CML specialist, you may be able to have more children. If you don't mind, why don't you tell us a little about yourself, like where you live, what you like do, and what are your labs? This is a huge CML family and there will always be someone who can answer your questions, and to wish you good luck. Bobby a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 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. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 11/2009 PCR 0.034 #840 Zavie's Zero Club From: Willoughby <willoughbyr@ ymail.com> Subject: Re: [ ] New Member Faiz groups (DOT) com Date: Thursday, February 4, 2010, 2:00 AM  Faiz Welcome. You will get lots of answers to this post and experiences differ, so I will only give you mine. I was Dx May 28 09 and Gleevec the next day. The response I've had was excellent. Side effects - I had a little nausea from Gleevec for the first 4-5 weeks until I found what - for me - was the best time to take it, which was about an hour after my evening meal (which needs to be a proper meal not a small snack). Once I discovered that, I found for me at least, no nausea. You can experiment with what works for you. Other effects - " gastro intestinal turbulence " and cramps were minor and more or less gone now. Many people find the side effects reduce over time but your doctor will explain. Only remaining side effect is indigestion - which I deal with using basic indigestion relief. I never stopped work though I slowed down a bit (to get over the Dx) though full time again now. Only thing definitely not to eat (I was told) was grapefruit or grapefruit juice. I also avoid anything too spicy (because of my indigestion) - shame because I like spicy food, or at least I used to! Good luck - have confidence. ____________ _________ _________ __ From: norfaizah mohd anuar <kelincing (DOT) com.my> groups (DOT) com Sent: Thu, February 4, 2010 5:15:56 AM Subject: Re: [ ] New Member Faiz  i will start gleevec on 10 feb 2010, what exactly effect from gleevec...can i be like a normal person...working and have a normal life?? ?????what should i eat and not to eat????? ____________ _________ _________ __ From: Lottie Duthu <lotajamcomcast (DOT) net> CML <groups (DOT) com> Sent: Saturday, 30 January 2010 2:30:19 Subject: [ ] New Member Faiz  Dear Faiz, You certainly are welcome to join our group if you are a CML patient. We have new members and members who have been subscribed for many years. Ask any question and someone will respond to help you understand the disease of CML and help you to read your CBC. Go ahead and ask your questions. Hands & hearts, Lottie Duthu Diagnosed July, 1996 at age 67 eached CCR December, 2009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2010 Report Share Posted February 6, 2010 hai bobby..my real name is norfaizah,im 27 years old,i like travelling and reading..im live at malaysia..im not sure about my labs..my doctor not really tell what to do,what happen,thats why im a bit nervous about everything coz my doctor not explain in details about everything yet..they just tell me that im have CML and gonna give me gleevec on 10th feb 2010..thats all..now i have treatment at PPUM one of gevorment hospital..everything i want to know i have to refer back to my personal doctor but his not specialist on this case,that why their refer me to another hospital...im married and have one daughter..im scared if she had CML also,is it possible?i really like to talk and smile,all people like to call me a little girl coz of my body size..im smaller than the other girl in my office..i like to eat chocolate,is it ok to eat chocolate?but i like to drink a lots of plain water also after eat any sweet things..how about you bobby?people around me now look at me like im a alien coz i already have rash on my face coz of taking some medicine be4 gleevec next week.. ________________________________ From: ROBERTA DOYLE <rcd1929@...> Sent: Saturday, 6 February 2010 10:37:37 Subject: Re: [ ] New Member Faiz  Hi Faiz that is a great attitude. You will find, after a couple of months and you get used to your " new life " , it does not have to be any different that your " old " life. Most of us still do everything we did before, travel, exercise, garden, dance, and under careful guidance from your CML specialist, you may be able to have more children. If you don't mind, why don't you tell us a little about yourself, like where you live, what you like do, and what are your labs? This is a huge CML family and there will always be someone who can answer your questions, and to wish you good luck. Bobby a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 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. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 11/2009 PCR 0.034 #840 Zavie's Zero Club From: Willoughby <willoughbyr@ ymail.com> Subject: Re: [ ] New Member Faiz groups (DOT) com Date: Thursday, February 4, 2010, 2:00 AM  Faiz Welcome. You will get lots of answers to this post and experiences differ, so I will only give you mine. I was Dx May 28 09 and Gleevec the next day. The response I've had was excellent. Side effects - I had a little nausea from Gleevec for the first 4-5 weeks until I found what - for me - was the best time to take it, which was about an hour after my evening meal (which needs to be a proper meal not a small snack). Once I discovered that, I found for me at least, no nausea. You can experiment with what works for you. Other effects - " gastro intestinal turbulence " and cramps were minor and more or less gone now. Many people find the side effects reduce over time but your doctor will explain. Only remaining side effect is indigestion - which I deal with using basic indigestion relief. I never stopped work though I slowed down a bit (to get over the Dx) though full time again now. Only thing definitely not to eat (I was told) was grapefruit or grapefruit juice. I also avoid anything too spicy (because of my indigestion) - shame because I like spicy food, or at least I used to! Good luck - have confidence. ____________ _________ _________ __ From: norfaizah mohd anuar <kelincing (DOT) com.my> groups (DOT) com Sent: Thu, February 4, 2010 5:15:56 AM Subject: Re: [ ] New Member Faiz  i will start gleevec on 10 feb 2010, what exactly effect from gleevec...can i be like a normal person...working and have a normal life?? ?????what should i eat and not to eat????? ____________ _________ _________ __ From: Lottie Duthu <lotajamcomcast (DOT) net> CML <groups (DOT) com> Sent: Saturday, 30 January 2010 2:30:19 Subject: [ ] New Member Faiz  Dear Faiz, You certainly are welcome to join our group if you are a CML patient. We have new members and members who have been subscribed for many years. Ask any question and someone will respond to help you understand the disease of CML and help you to read your CBC. Go ahead and ask your questions. Hands & hearts, Lottie Duthu Diagnosed July, 1996 at age 67 eached CCR December, 2009 Quote Link to comment Share on other sites More sharing options...
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