Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Hi all Without whinging and going into details of what is happening to/with me, how many men and women out there are on the full dose of Glivec 800mg? How are you coping with it? And most importantly what results are you getting? I would appreciate all comments regarding side effects. Thanks so much, Jackie On 800mg since first diagnosis in Nov '04. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 >Hi Jackie, I've been on 800 for 6 years. My results have been excellent. Very low PCR. At the time I bumped up the hope was the higher dose would hold me for 6 months so it has been very successful for me. I have a difficult time with side effects but I'm not typical as I have a history of intolerance to drugs and my responses can be extreme. I would say fatigue with a capital F is the worst. That said, lots of people do very well. I've heard some through the years say they barely noticed the difference when they went to 800. I hope you hear from some of them. Good luck Ellen > Hi all > > > > Without whinging and going into details of what is happening to/with me, how > many men and women out there are on the full dose of Glivec 800mg? How are > you coping with it? And most importantly what results are you getting? > > > > I would appreciate all comments regarding side effec > > Thanks so much, > > Jackie > > > > > > > > On 800mg since first diagnosis in Nov '04. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 I'm on 400 mg., and I feel like I'm sleeping my life away. I can't even imagine what 800 mg. would be like. From: jackie@... Date: Fri, 9 Jan 2009 22:47:49 +1100 Subject: RE: [ ] Glivec 800mg Hi all Without whinging and going into details of what is happening to/with me, how many men and women out there are on the full dose of Glivec 800mg? How are you coping with it? And most importantly what results are you getting? I would appreciate all comments regarding side effects. Thanks so much, Jackie On 800mg since first diagnosis in Nov '04. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Granny is on 400 mg. and she pukes hers up about 3 times a week. And she has to take a nap everyday. Of course she is 81 yrs. old. I can't imagine what any higher dose would do. -- Kristie Skipper skipper3@... --------- RE: [ ] Glivec 800mg > > > > > > > > > > > > > > > > > > > > > Hi all > > > > Without whinging and going into details of what is happening to/with me, how > > many men and women out there are on the full dose of Glivec 800mg? How are > > you coping with it? And most importantly what results are you getting? > > > > I would appreciate all comments regarding side effects. > > > > Thanks so much, > > > > Jackie > > > > On 800mg since first diagnosis in Nov '04. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 wow it really is very different for everyone. I'm on 400 and I had all the cosmetic stuff ,puffy eyes skin rashes etc and the bone pain, muscle cramps but although I was queasy I never threw up and although a bit tired I still work full time and I'm in training for my third 1/2 marathon. I really should count my blessings. My brain is slower and scrambled. I didn't get laid off in the first round but it sounds like there is another one coming. Oh well- I'll have time to write my book. I told my friends I will be on the corner with a sign- Will work for Chemo. > From: skipper3@... <skipper3@...> > Subject: RE: [ ] Glivec 800mg > > Date: Friday, January 9, 2009, 11:49 AM > Granny is on 400 mg. and she pukes hers up about 3 times a > week. And she has to take a nap everyday. Of course she is > 81 yrs. old. I can't imagine what any higher dose would > do. > > -- > Kristie Skipper > skipper3@... > > --------- RE: [ ] Glivec 800mg > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi all > > > > > > > > Without whinging and going into details of what is > happening to/with me, how > > > > many men and women out there are on the full dose of > Glivec 800mg? How are > > > > you coping with it? And most importantly what results > are you getting? > > > > > > > > I would appreciate all comments regarding side > effects. > > > > > > > > Thanks so much, > > > > > > > > Jackie > > > > > > > > On 800mg since first diagnosis in Nov '04. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 I *love* that idea! Boy, that's us all over. From: Sionito@... Date: Fri, 9 Jan 2009 21:40:09 +0000 Subject: Re: [ ] Glivec 800mg Wow a marathon!!! Congrats! I work full time, my brain is mushy too at times. My job is touchy at the moment and i love your sign idea... Maybe i will make a t-shirt for us??? Will work for chemo! A cancer patient's nightmare is not death, it's losing our insurance! Sent from my Verizon Wireless BlackBerry RE: [ ] Glivec 800mg > > Date: Friday, January 9, 2009, 11:49 AM > Granny is on 400 mg. and she pukes hers up about 3 times a > week. And she has to take a nap everyday. Of course she is > 81 yrs. old. I can't imagine what any higher dose would > do. > > -- > Kristie Skipper > skipper3@... > > --------- RE: [ ] Glivec 800mg > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi all > > > > > > > > Without whinging and going into details of what is > happening to/with me, how > > > > many men and women out there are on the full dose of > Glivec 800mg? How are > > > > you coping with it? And most importantly what results > are you getting? > > > > > > > > I would appreciate all comments regarding side > effects. > > > > > > > > Thanks so much, > > > > > > > > Jackie > > > > > > > > On 800mg since first diagnosis in Nov '04. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Wow a marathon!!! Congrats! I work full time, my brain is mushy too at times. My job is touchy at the moment and i love your sign idea... Maybe i will make a t-shirt for us??? Will work for chemo! A cancer patient's nightmare is not death, it's losing our insurance! Sent from my Verizon Wireless BlackBerry RE: [ ] Glivec 800mg > > Date: Friday, January 9, 2009, 11:49 AM > Granny is on 400 mg. and she pukes hers up about 3 times a > week. And she has to take a nap everyday. Of course she is > 81 yrs. old. I can't imagine what any higher dose would > do. > > -- > Kristie Skipper > skipper3@... > > --------- RE: [ ] Glivec 800mg > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi all > > > > > > > > Without whinging and going into details of what is > happening to/with me, how > > > > many men and women out there are on the full dose of > Glivec 800mg? How are > > > > you coping with it? And most importantly what results > are you getting? > > > > > > > > I would appreciate all comments regarding side > effects. > > > > > > > > Thanks so much, > > > > > > > > Jackie > > > > > > > > On 800mg since first diagnosis in Nov '04. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 I also cannot comment on 800mg. of Gleevec, but if it wipes you out its certainly natural. I have been on 400mg. since 2000, and I also feel like I could just sleep my life away. The fatigue is the worst, then throw in the periodic nausea ( only if I do not eat a substantial meal before taking my med) .. The puffy eyes are still bad. They take on a different shape every morning. My husband will say, lets see what your eyes look like today. He is amazed at how they swell, and then I apply ice pack. Within 10 minutes I look normal. I could go on and on with all the experiences with 400mg. If your on 800mg. and its doing its thing, concentrate on the results your getting with your CML. > From: skipper3@... <skipper3@...> > Subject: RE: [ ] Glivec 800mg > > Date: Friday, January 9, 2009, 11:49 AM > Granny is on 400 mg. and she pukes hers up about 3 times a > week. And she has to take a nap everyday. Of course she is > 81 yrs. old. I can't imagine what any higher dose would > do. > > -- > Kristie Skipper > skipper3@... > > --------- RE: [ ] Glivec 800mg > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi all > > > > > > > > Without whinging and going into details of what is > happening to/with me, how > > > > many men and women out there are on the full dose of > Glivec 800mg? How are > > > > you coping with it? And most importantly what results > are you getting? > > > > > > > > I would appreciate all comments regarding side > effects. > > > > > > > > Thanks so much, > > > > > > > > Jackie > > > > > > > > On 800mg since first diagnosis in Nov '04. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Hi Jackie How did you get on 800! My onc wanted me to go to 800 off 400 because my bcr/able went up a few points.Ofter getting feedback from those that know I settled on 600 My onc was not to happy.Since firring him my 2 onc said I would have been fine on 400 .It took 2years 8 months to get pcru.He also said now I have to stay on 600 I get by pretty good.Switching to 6 pills from 3 400 and 2 100 which is 2 prescriptions ________________________________ From: ets618 <ets618@...> Sent: Friday, January 9, 2009 9:03:52 AM Subject: Re: [ ] Glivec 800mg >Hi Jackie, I've been on 800 for 6 years. My results have been excellent. Very low PCR. At the time I bumped up the hope was the higher dose would hold me for 6 months so it has been very successful for me. I have a difficult time with side effects but I'm not typical as I have a history of intolerance to drugs and my responses can be extreme. I would say fatigue with a capital F is the worst. That said, lots of people do very well. I've heard some through the years say they barely noticed the difference when they went to 800. I hope you hear from some of them. Good luck Ellen > Hi all > > > > Without whinging and going into details of what is happening to/with me, how > many men and women out there are on the full dose of Glivec 800mg? How are > you coping with it? And most importantly what results are you getting? > > > > I would appreciate all comments regarding side effec > > Thanks so much, > > Jackie > > > > > > > > On 800mg since first diagnosis in Nov '04. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Hi :-) When I was originally diagnosed by white cells were high, going from 200 to 375 in a week. My spleen was massive. I was very much in chronic stage, but now wonder if things, even then, were starting to rev up. The doctor wanted to fight it in the guts from the start and he did the right thing, giving me 800mg. I have gone from 375% to 0.02. The side effects are pretty bad though. I had extremely heavy menstrual bleeding from the start (now on the pill permanently due to large fibroid, glivec induced), fragile skin, no colour in hair or skin, diarrhea most days, swelling around the eye (but not badly), my bones feel cold all the time (always wearing full clothes, even in summer), flushing skin of the face, depression, tiredness, Fatigue (capital F). The list goes on . I am 47 and have I have two beautiful daughters who I live for. I am still working full time, from home. I run a transcription company with a partner in Perth and we're doing A-OK. I am considering to ask my onc to reduce me to 600, but a little scared as my results are still bouncing around a little. Jackie _____ From: [mailto: ] On Behalf Of Shipley Sent: Saturday, 10 January 2009 12:45 PM Subject: Re: [ ] Glivec 800mg Hi Jackie How did you get on 800! My onc wanted me to go to 800 off 400 because my bcr/able went up a few points.Ofter getting feedback from those that know I settled on 600 My onc was not to happy.Since firring him my 2 onc said I would have been fine on 400 .It took 2years 8 months to get pcru.He also said now I have to stay on 600 I get by pretty good.Switching to 6 pills from 3 400 and 2 100 which is 2 prescriptions ________________________________ From: ets618 <ets618 (DOT) <mailto:ets618%40> com> groups (DOT) <mailto:%40> com Sent: Friday, January 9, 2009 9:03:52 AM Subject: Re: [ ] Glivec 800mg >Hi Jackie, I've been on 800 for 6 years. My results have been excellent. Very low PCR. At the time I bumped up the hope was the higher dose would hold me for 6 months so it has been very successful for me. I have a difficult time with side effects but I'm not typical as I have a history of intolerance to drugs and my responses can be extreme. I would say fatigue with a capital F is the worst. That said, lots of people do very well. I've heard some through the years say they barely noticed the difference when they went to 800. I hope you hear from some of them. Good luck Ellen > Hi all > > > > Without whinging and going into details of what is happening to/with me, how > many men and women out there are on the full dose of Glivec 800mg? How are > you coping with it? And most importantly what results are you getting? > > > > I would appreciate all comments regarding side effec > > Thanks so much, > > Jackie > > > > > > > > On 800mg since first diagnosis in Nov '04. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 I tried 800, but really struggled with the side effects and quite honestly I don't think there is a benefit to 800 over more tolerable lower doses of 600 or 400 that are very effective at reaching PCRU. Sent from my iPhone On Jan 10, 2009, at 7:35 AM, " Jackie Petropoulos " <jackie@...> wrote: > Hi :-) > > When I was originally diagnosed by white cells were high, going from > 200 to > 375 in a week. My spleen was massive. I was very much in chronic > stage, but > now wonder if things, even then, were starting to rev up. The doctor > wanted > to fight it in the guts from the start and he did the right thing, > giving me > 800mg. > > I have gone from 375% to 0.02. > > The side effects are pretty bad though. I had extremely heavy > menstrual > bleeding from the start (now on the pill permanently due to large > fibroid, > glivec induced), fragile skin, no colour in hair or skin, diarrhea > most > days, swelling around the eye (but not badly), my bones feel cold > all the > time (always wearing full clothes, even in summer), flushing skin of > the > face, depression, tiredness, Fatigue (capital F). The list goes on . > > I am 47 and have I have two beautiful daughters who I live for. > > I am still working full time, from home. I run a transcription > company with > a partner in Perth and we're doing A-OK. > > I am considering to ask my onc to reduce me to 600, but a little > scared as > my results are still bouncing around a little. > > Jackie > > _____ > > From: [mailto: ] On Behalf > Of > Shipley > Sent: Saturday, 10 January 2009 12:45 PM > > Subject: Re: [ ] Glivec 800mg > > Hi Jackie How did you get on 800! My onc wanted me to go to 800 off > 400 > because my bcr/able went up a few points.Ofter getting feedback from > those > that know I settled on 600 My onc was not to happy.Since firring him > my 2 > onc said I would have been fine on 400 .It took 2years 8 months to get > pcru.He also said now I have to stay on 600 I get by pretty > good.Switching > to 6 pills from 3 400 and 2 100 which is 2 prescriptions > > ________________________________ > From: ets618 <ets618 (DOT) <mailto:ets618%40> com> > groups (DOT) <mailto:%40> com > Sent: Friday, January 9, 2009 9:03:52 AM > Subject: Re: [ ] Glivec 800mg > > > >Hi Jackie, > > I've been on 800 for 6 years. My results have been > excellent. Very low PCR. At the time I bumped up the hope was the > higher dose would hold me for 6 months so it has been very > successful for me. > > I have a difficult time with side effects but I'm not > typical as I have a history of intolerance to drugs and my responses > can be extreme. I would say fatigue with a capital F is the worst. > That said, lots of people do very well. > I've heard some through the years say they barely noticed the > difference when they went to 800. I hope you hear from some of them. > Good luck Ellen > > Hi all > > > > > > > > Without whinging and going into details of what is happening > to/with me, how > > many men and women out there are on the full dose of Glivec 800mg? > How are > > you coping with it? And most importantly what results are you > getting? > > > > > > > > I would appreciate all comments regarding side effec > > > > Thanks so much, > > > > Jackie > > > > > > > > > > > > > > > > On 800mg since first diagnosis in Nov '04. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Hi Jackie, When I was first diagnosed in 2001, Gleevec (Imatinib) was so new that it took a fellow CML patient who was also an MD to suggest that when 400 mg didn't work for me that I try 800 mg instead. My doc agreed to it since there was nothing in the Imatinib protocol to prevent it. The side effects were enormous -- bone pain, stomach bleeds and fatigue. However, since there was no other viable option at the time I have to say that it was worth it to finally reach CCR (never PCRU) for a relatively short period of time. And this is the important part: it held me until dasatinib became available in trial. It was a rough way to go, I have to say. BUT, it was the ONLY way to go at the time. Now I'm on dasatinib (Sprycel) and am PCRU and have been for 3 years. L Re: [ ] Glivec 800mg >Hi Jackie, I've been on 800 for 6 years. My results have been excellent. Very low PCR. At the time I bumped up the hope was the higher dose would hold me for 6 months so it has been very successful for me. I have a difficult time with side effects but I'm not typical as I have a history of intolerance to drugs and my responses can be extreme. I would say fatigue with a capital F is the worst. That said, lots of people do very well. I've heard some through the years say they barely noticed the difference when they went to 800. I hope you hear from some of them. Good luck Ellen > Hi all > > > > Without whinging and going into details of what is happening to/with me, how > many men and women out there are on the full dose of Glivec 800mg? How are > you coping with it? And most importantly what results are you getting? > > > > I would appreciate all comments regarding side effec > > Thanks so much, > > Jackie > > > > > > > > On 800mg since first diagnosis in Nov '04. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 > The side effects are pretty bad though. I had extremely heavy menstrual bleeding from the start (now on the pill permanently due to large fibroid, glivec induced), ******************************************* Hi Jackie, Sorry to hear about all the side effects you're having. I was wondering if you could tell me how they determined that your fibroids were caused by the Gleevec. I've searched a number of medical sites and wasn't able to find a connection. I also have fibroids but was told that most women over 35 have them and the older a woman gets, the more problems the fibroids cause due to the higher estrogen levels. After menopause when estrogen finally drops, the fibroids are supposed to cause less problems. Something to look forward to I guess. I'd be curious to see any information you have regarding this. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 My hat is off to you for maintaining a business and raising two daughters. My god! How do you do it! You are made of strong stuff, Jackie. From: jackie@... Date: Sat, 10 Jan 2009 23:35:02 +1100 Subject: RE: [ ] Glivec 800mg Hi :-) When I was originally diagnosed by white cells were high, going from 200 to 375 in a week. My spleen was massive. I was very much in chronic stage, but now wonder if things, even then, were starting to rev up. The doctor wanted to fight it in the guts from the start and he did the right thing, giving me 800mg. I have gone from 375% to 0.02. The side effects are pretty bad though. I had extremely heavy menstrual bleeding from the start (now on the pill permanently due to large fibroid, glivec induced), fragile skin, no colour in hair or skin, diarrhea most days, swelling around the eye (but not badly), my bones feel cold all the time (always wearing full clothes, even in summer), flushing skin of the face, depression, tiredness, Fatigue (capital F). The list goes on . I am 47 and have I have two beautiful daughters who I live for. I am still working full time, from home. I run a transcription company with a partner in Perth and we're doing A-OK. I am considering to ask my onc to reduce me to 600, but a little scared as my results are still bouncing around a little. Jackie _____ From: [mailto: ] On Behalf Of Shipley Sent: Saturday, 10 January 2009 12:45 PM Subject: Re: [ ] Glivec 800mg Hi Jackie How did you get on 800! My onc wanted me to go to 800 off 400 because my bcr/able went up a few points.Ofter getting feedback from those that know I settled on 600 My onc was not to happy.Since firring him my 2 onc said I would have been fine on 400 .It took 2years 8 months to get pcru.He also said now I have to stay on 600 I get by pretty good.Switching to 6 pills from 3 400 and 2 100 which is 2 prescriptions ________________________________ From: ets618 <ets618 (DOT) <mailto:ets618%40> com> groups (DOT) <mailto:%40> com Sent: Friday, January 9, 2009 9:03:52 AM Subject: Re: [ ] Glivec 800mg >Hi Jackie, I've been on 800 for 6 years. My results have been excellent. Very low PCR. At the time I bumped up the hope was the higher dose would hold me for 6 months so it has been very successful for me. I have a difficult time with side effects but I'm not typical as I have a history of intolerance to drugs and my responses can be extreme. I would say fatigue with a capital F is the worst. That said, lots of people do very well. I've heard some through the years say they barely noticed the difference when they went to 800. I hope you hear from some of them. Good luck Ellen > Hi all > > > > Without whinging and going into details of what is happening to/with me, how > many men and women out there are on the full dose of Glivec 800mg? How are > you coping with it? And most importantly what results are you getting? > > > > I would appreciate all comments regarding side effec > > Thanks so much, > > Jackie > > > > > > > > On 800mg since first diagnosis in Nov '04. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 Hi Tracey, The reason I came to that conclusion (along with the gynecologist), is because I had regular periods until the very month I started Glivec in the December. From that very first month my period was so heavy, I thought I would have to be hospitalized. Two months later I saw the gynecologist who saw the (then) small fibroid and said that this was so small it shouldn't affect my cycle at all. We then put the heavy bleeding down to the Glivec. It was only then that I was put on the pill to control the bleeding (I had never ever been on it before then). At the same time I was put on transexamic acid to regulate the periods, however all that did was stop the bleeding completely, rather than control it. I agree with you that estrogen is now contributing towards the fibroid, which is now probably the size of a small grapefruit. I have been on the pill continuously for almost three years, have an appointment at the hospital in March and will probably need a hysterectomy which I will avoid if I can. I think it's probably too big now for ablation. How big are your fibroids? Do they affect your periods? I tell you something, I REALLY MISS my periods and I never thought I'd say that. I can't bear the thought of hysterectomy. And to further add to problems, how will I know when I start going through menopause otherwise? I'll be interested to hear from you :-) Jackie _____ From: [mailto: ] On Behalf Of Tracey Sent: Sunday, 11 January 2009 4:33 AM Subject: Re: [ ] Glivec 800mg > The side effects are pretty bad though. I had extremely heavy menstrual bleeding from the start (now on the pill permanently due to large fibroid, glivec induced), ******************************************* Hi Jackie, Sorry to hear about all the side effects you're having. I was wondering if you could tell me how they determined that your fibroids were caused by the Gleevec. I've searched a number of medical sites and wasn't able to find a connection. I also have fibroids but was told that most women over 35 have them and the older a woman gets, the more problems the fibroids cause due to the higher estrogen levels. After menopause when estrogen finally drops, the fibroids are supposed to cause less problems. Something to look forward to I guess. I'd be curious to see any information you have regarding this. Tracey __________ Information from ESET NOD32 Antivirus, version of virus signature database 3756 (20090110) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Hi Jackie, I have several small fibroids in varying sizes with the biggest about 3-4 cms. I don't think that they're interfering with my cycle because I have a fairly normal cycle now. When I first started on Gleevec though, I had a horrendous time with heavy bleeding but never had an ultrasound so I really don't know if there were fibroids that played a role. After about a year my cycle regulated on its own and became normal. I have no idea why or what changed. I was 31 when diagnosed so I don't think age had much to do with it. I only found out about the fibroids when I was 35 and have no idea when they started, how long they were there or what, if any effect they had on things. Keep in mind though that my cycle had already became regular at this point so I really can't blame the Gleevec for the fibroids, especially since I was that magical age of 35. I don't doubt that Gleevec has some effect on our hormones so I guess it's not far fetched to assume that it could influence fibroid growth. Since my cycle regulated after a year though, and since my fibroids are within what would be considered normal for a woman my age, I can't really conclude that Gleevec caused them. There are other signs besides lack of menstruation that will tell you if you are menopausal so don't worry about not knowing. Tracey > > The side effects are pretty bad though. I had extremely heavy > menstrual bleeding from the start (now on the pill permanently due to > large fibroid, glivec induced), > > ******************************************* > > Hi Jackie, > > Sorry to hear about all the side effects you're having. I was > wondering if you could tell me how they determined that your fibroids > were caused by the Gleevec. I've searched a number of medical sites > and wasn't able to find a connection. > > I also have fibroids but was told that most women over 35 have them > and the older a woman gets, the more problems the fibroids cause due > to the higher estrogen levels. After menopause when estrogen finally > drops, the fibroids are supposed to cause less problems. Something > to look forward to I guess. > > I'd be curious to see any information you have regarding this. > > Tracey > > > > __________ Information from ESET NOD32 Antivirus, version of virus signature > database 3756 (20090110) __________ > > The message was checked by ESET NOD32 Antivirus. > > http://www.eset.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Dear Jackie, Please don't ever feel like you are whining. We are here for the purpose of helping to heal one another. Being supportive is part of the healing process, to help you get over the blahs, or whatever else is making your life miserable. No one else understands, but we do. Collectively, we could write a book about side effects. There may be someone else out there who is having the same problem, so go ahead and air it out for all to see and you will feel better after venting. Blessings, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 > > Hi all > > > > Without whinging and going into details of what is happening to/with me, how > many men and women out there are on the full dose of Glivec 800mg? How are > you coping with it? And most importantly what results are you getting? > > > > I would appreciate all comments regarding side effects. > > > > Thanks so much, > > Jackie > > > > > > > > On 800mg since first diagnosis in Nov '04. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Wow Louis, I just read your story with tears rolling down my face. Sending you a huge kiss and hug. My biggest hurdle now is to get over my big uterus problem. Scary or what. I was so very glad to receive Sue's message last night.(Sue, you have no idea what it meant to me reading that from another female). I am also glad because I do tend to feel very alone with this. 800mg a day is a hard pill to swallow. I have been so pleased just recently, knowing that my counts were all good and that I was relatively stable at 0.02%. This last time there was a blip and it was at 0.05%. I've been feeling depressed ever since. I do know that my onc did the right thing in putting me on 800, but even so .... After reading both your story and Sue's, I feel much closer to you all. Thank you so much for sharing that with me :-) Much love and kisses Jackie xxxxx Re: [ ] Glivec 800mg > > Hi all > > > > Without whinging and going into details of what is happening to/with me, how > many men and women out there are on the full dose of Glivec 800mg? How are > you coping with it? And most importantly what results are you getting? > > > > I would appreciate all comments regarding side effects. > > > > Thanks so much, > > Jackie > > > > > > > > On 800mg since first diagnosis in Nov '04. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Salu Louis, Long time no hear or see. It is great to see your post again. When it comes to our CML stories, we could be twins. We were both diagnosed in 1999 We both did the Peg Interferon vs Interferon trial. We both started Gleevec in March 2001 We both saw Dr. Mauro at OHSU. I beat you in the Zero Club. I'm # 102 and you're # 479. You beat me in the baby race (1-0 for you, but I keep trying. Yes, we are truly blessed, 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 Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie Re: [ ] Glivec 800mg > > Hi all > > > > Without whinging and going into details of what is happening to/with me, how > many men and women out there are on the full dose of Glivec 800mg? How are > you coping with it? And most importantly what results are you getting? > > > > I would appreciate all comments regarding side effects. > > > > Thanks so much, > > Jackie > > > > > > > > On 800mg since first diagnosis in Nov '04. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Hello everyone, Happy New Year to all!! I guess I am now what was called when I first joined a CML Board lurker..lol...I use to post, use to chat, but things just got so hectic and just couldn't find time to post, which is honestly no excuse. I do read the posts periodically and noticed the question on 800mg of Gleevec. I will share my story. I was diagnosed in March 2003. Before that for a few months I was feeling more tired then usual, but that was it. The beginning of the year 2003 I went for my annual check up and of course the bloodwork came back with my WBC up to 65,000. Of course I thought oh I have an infection so just put me on antibidoics. That didn't work. Oh yeah, I live in the Cayman Islands so the doctor wanted me to go to Cleveland Clinic in Florida where he gets some form of " kick back " . I did my own research for we had a friend that had Leukeima years back (acute) and he had a few BMT and lived!!! He went to MD . For those also with children, I have twin daughters and at that time they were 12. My husband and I thought the best approach was to explain to them as much as we could until we could find out what was what. They accompanied us to MD and the doctors, nurses and everyone there were great. I think it was a good idea to let them come for they were old enough to understand and if god forbid something did happen they would be able to deal with it a bit better then it being a surprise and leaving them in the dark. At the time I went Gleevec was on a trial basis with the dosages. I was one of the last lucky ones to be offered the 800mg of gleevec - 4 in the morning, 4 at night. Hey remember Zavie the big orange capsules, now we have little tablets...lol....At the time the doctor stated that they were seeing better responses in the 600mg-800mg then in the 400mg. I didn't have anything to lose so I went on the 800mg. I was told what the side effects were, but I honestly never thought they were going to be as bad as they were. Living in the Cayman Islands, we also had a horsebackriding business in which we rode horses on the beach in the sun......here I am being told not to go in the sun without proper clothing, hats, etc. Sun lotion may not block the sun for the side effects of the medication!!! I went home just happy to know that Gleevec may be the drug to safe my life and I could take any type of side effects. Week number one wasn't so bad, but then it began. Name it I had it........water retention, bone pain, the rash, oh my gosh the rash, that was horrible. I can't even begin to describe it. I felt like I had the flu 24/7. Sitting in my car running my hand through my hair (I had hair down to my waist almost), it started coming out!!! This wasn't suppose to happen but it did!!! I just kept taking the medication hoping beyond hope that the side effects would go away. I probably should have gone off of such a high dosage, but I was so afraid that if i did i wouldn't get better (not recommended to everyone). My bloodwork was being done every week, so exciting for all my bloodwork was coming back positive. Felt like you know what, but otherwise everything was coming back good!!! I think the side effects lasted for about 3-6 mths. One morning I woke up and I started feeling better. I never gave up and I think that is the main thing!!!! It is now going onto 6 years, 6 years I cannot believe that. When I was diagnosed all I wanted was to see my daughters graduate from High School in 2007 AND I DID!!! Now I want to seem them graduate from college get married and see them happy and hopefully with children!!! LOL Today they are saying the choice is 600mg, but I am still on 800mg. Believe it or not, I tan now, my skin isn't as translucent as it was, water retention, once in a while. Being tired well I think we are all tired from time to time. I haven't gotten the rash since. Diarehha, well again depending on what I eat, some foods do effect it more then others. Heavy menstrual cycle, if you take the birth control pill that will control it some what. I started excercising last year, lost weight, pretty fit and it does help alot!!! Try to avoid as much sugar, keep your carbs down some what and eat plenty of salads/veg/fruit. You do feel better with a little bit more energy!! Sorry for such a lengthy email, but just wanted those to know who have just been diagnosed that IT DOES GET BETTER!!! Lottie I see you post alot and I am glad that you are better now!!!!! Oh my daughters are now 18 and will be going to college this year!!!! They new mommy was going to be okay and I think those with children that are of age that understand let them be a part of it, you don't want them to worry, but it is good that they understand what is going on!!! Warm wishes to everyone!!!! Penny From: Lottie Duthu <lotajam@...> Subject: [ ] Re: Glivec 800mg " CML " < > Date: Sunday, January 11, 2009, 1:03 AM Dear Jackie, Please don't ever feel like you are whining. We are here for the purpose of helping to heal one another. Being supportive is part of the healing process, to help you get over the blahs, or whatever else is making your life miserable. No one else understands, but we do. Collectively, we could write a book about side effects. There may be someone else out there who is having the same problem, so go ahead and air it out for all to see and you will feel better after venting. Blessings, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 What a great email Penny. Thank you for that. And you're right about sharing information with my kids. They need to know ahead of time, so I talked to my two older girls last night. They were fine and remained positive for me. They reasurred me that I shouldn't worry ahead of time about what " might " happen, and I usually keep the same attitude, but I guess this menstrual cycle got the best of me and my emotions. I too have fibroids, and have for about 18 years, but they don't make me bleed more. My previous gyno told me that I couldn't take the pill because the estrogen would enlarge the fibroids, but my new young gyno thinks maybe I should take the pill so I'm confused.  ________________________________ From: Penny Rivers <pennyhon2003@...> Sent: Monday, January 12, 2009 5:29:10 AM Subject: Re: [ ] Re: Glivec 800mg Hello everyone, Happy New Year to all!! I guess I am now what was called when I first joined a CML Board lurker..lol. ..I use to post, use to chat, but things just got so hectic and just couldn't find time to post, which is honestly no excuse. I do read the posts periodically and noticed the question on 800mg of Gleevec. I will share my story. I was diagnosed in March 2003. Before that for a few months I was feeling more tired then usual, but that was it. The beginning of the year 2003 I went for my annual check up and of course the bloodwork came back with my WBC up to 65,000. Of course I thought oh I have an infection so just put me on antibidoics. That didn't work. Oh yeah, I live in the Cayman Islands so the doctor wanted me to go to Cleveland Clinic in Florida where he gets some form of " kick back " . I did my own research for we had a friend that had Leukeima years back (acute) and he had a few BMT and lived!!! He went to MD . For those also with children, I have twin daughters and at that time they were 12. My husband and I thought the best approach was to explain to them as much as we could until we could find out what was what. They accompanied us to MD and the doctors, nurses and everyone there were great. I think it was a good idea to let them come for they were old enough to understand and if god forbid something did happen they would be able to deal with it a bit better then it being a surprise and leaving them in the dark. At the time I went Gleevec was on a trial basis with the dosages. I was one of the last lucky ones to be offered the 800mg of gleevec - 4 in the morning, 4 at night. Hey remember Zavie the big orange capsules, now we have little tablets...lol. ...At the time the doctor stated that they were seeing better responses in the 600mg-800mg then in the 400mg. I didn't have anything to lose so I went on the 800mg. I was told what the side effects were, but I honestly never thought they were going to be as bad as they were. Living in the Cayman Islands, we also had a horsebackriding business in which we rode horses on the beach in the sun......here I am being told not to go in the sun without proper clothing, hats, etc. Sun lotion may not block the sun for the side effects of the medication!! ! I went home just happy to know that Gleevec may be the drug to safe my life and I could take any type of side effects. Week number one wasn't so bad, but then it began. Name it I had it........water retention, bone pain, the rash, oh my gosh the rash, that was horrible. I can't even begin to describe it. I felt like I had the flu 24/7. Sitting in my car running my hand through my hair (I had hair down to my waist almost), it started coming out!!! This wasn't suppose to happen but it did!!! I just kept taking the medication hoping beyond hope that the side effects would go away. I probably should have gone off of such a high dosage, but I was so afraid that if i did i wouldn't get better (not recommended to everyone). My bloodwork was being done every week, so exciting for all my bloodwork was coming back positive. Felt like you know what, but otherwise everything was coming back good!!! I think the side effects lasted for about 3-6 mths. One morning I woke up and I started feeling better. I never gave up and I think that is the main thing!!!! It is now going onto 6 years, 6 years I cannot believe that. When I was diagnosed all I wanted was to see my daughters graduate from High School in 2007 AND I DID!!! Now I want to seem them graduate from college get married and see them happy and hopefully with children!!! LOL Today they are saying the choice is 600mg, but I am still on 800mg. Believe it or not, I tan now, my skin isn't as translucent as it was, water retention, once in a while. Being tired well I think we are all tired from time to time. I haven't gotten the rash since. Diarehha, well again depending on what I eat, some foods do effect it more then others. Heavy menstrual cycle, if you take the birth control pill that will control it some what. I started excercising last year, lost weight, pretty fit and it does help alot!!! Try to avoid as much sugar, keep your carbs down some what and eat plenty of salads/veg/fruit. You do feel better with a little bit more energy!! Sorry for such a lengthy email, but just wanted those to know who have just been diagnosed that IT DOES GET BETTER!!! Lottie I see you post alot and I am glad that you are better now!!!!! Oh my daughters are now 18 and will be going to college this year!!!! They new mommy was going to be okay and I think those with children that are of age that understand let them be a part of it, you don't want them to worry, but it is good that they understand what is going on!!! Warm wishes to everyone!!!! Penny From: Lottie Duthu <lotajamcomcast (DOT) net> Subject: [ ] Re: Glivec 800mg " CML " <groups (DOT) com> Date: Sunday, January 11, 2009, 1:03 AM Dear Jackie, Please don't ever feel like you are whining. We are here for the purpose of helping to heal one another. Being supportive is part of the healing process, to help you get over the blahs, or whatever else is making your life miserable. No one else understands, but we do. Collectively, we could write a book about side effects. There may be someone else out there who is having the same problem, so go ahead and air it out for all to see and you will feel better after venting. Blessings, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 How about the lowest dosage of birth control pills the ones they put younggirls who suffer from bad cramps I am glad year girls r supportive. Stay positive there r ssssoooo many altermatives now Warm wishes Penny Sent from my BlackBerry® wireless device from Cable & Wireless bMobile [ ] Re: Glivec 800mg " CML " <groups (DOT) com> Date: Sunday, January 11, 2009, 1:03 AM Dear Jackie, Please don't ever feel like you are whining. We are here for the purpose of helping to heal one another. Being supportive is part of the healing process, to help you get over the blahs, or whatever else is making your life miserable. No one else understands, but we do. Collectively, we could write a book about side effects. There may be someone else out there who is having the same problem, so go ahead and air it out for all to see and you will feel better after venting. Blessings, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Hi Penny, Thank you for the update. I miss you on the list and the chats. You have travelled the journey really well. In the early days CML was a death sentence. Today it is a chronic disease with side effects that we have to endure. Tomorrow we look forward to a cure. Zavie PS Penny is # 552 in the Zero Club. 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 Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of Penny Rivers Sent: January 12, 2009 8:29 AM Subject: Re: [ ] Re: Glivec 800mg Hello everyone, Happy New Year to all!! I guess I am now what was called when I first joined a CML Board lurker..lol...I use to post, use to chat, but things just got so hectic and just couldn't find time to post, which is honestly no excuse. I do read the posts periodically and noticed the question on 800mg of Gleevec. I will share my story. I was diagnosed in March 2003. Before that for a few months I was feeling more tired then usual, but that was it. The beginning of the year 2003 I went for my annual check up and of course the bloodwork came back with my WBC up to 65,000. Of course I thought oh I have an infection so just put me on antibidoics. That didn't work. Oh yeah, I live in the Cayman Islands so the doctor wanted me to go to Cleveland Clinic in Florida where he gets some form of " kick back " . I did my own research for we had a friend that had Leukeima years back (acute) and he had a few BMT and lived!!! He went to MD . For those also with children, I have twin daughters and at that time they were 12. My husband and I thought the best approach was to explain to them as much as we could until we could find out what was what. They accompanied us to MD and the doctors, nurses and everyone there were great. I think it was a good idea to let them come for they were old enough to understand and if god forbid something did happen they would be able to deal with it a bit better then it being a surprise and leaving them in the dark. At the time I went Gleevec was on a trial basis with the dosages. I was one of the last lucky ones to be offered the 800mg of gleevec - 4 in the morning, 4 at night. Hey remember Zavie the big orange capsules, now we have little tablets...lol....At the time the doctor stated that they were seeing better responses in the 600mg-800mg then in the 400mg. I didn't have anything to lose so I went on the 800mg. I was told what the side effects were, but I honestly never thought they were going to be as bad as they were. Living in the Cayman Islands, we also had a horsebackriding business in which we rode horses on the beach in the sun......here I am being told not to go in the sun without proper clothing, hats, etc. Sun lotion may not block the sun for the side effects of the medication!!! I went home just happy to know that Gleevec may be the drug to safe my life and I could take any type of side effects. Week number one wasn't so bad, but then it began. Name it I had it........water retention, bone pain, the rash, oh my gosh the rash, that was horrible. I can't even begin to describe it. I felt like I had the flu 24/7. Sitting in my car running my hand through my hair (I had hair down to my waist almost), it started coming out!!! This wasn't suppose to happen but it did!!! I just kept taking the medication hoping beyond hope that the side effects would go away. I probably should have gone off of such a high dosage, but I was so afraid that if i did i wouldn't get better (not recommended to everyone). My bloodwork was being done every week, so exciting for all my bloodwork was coming back positive. Felt like you know what, but otherwise everything was coming back good!!! I think the side effects lasted for about 3-6 mths. One morning I woke up and I started feeling better. I never gave up and I think that is the main thing!!!! It is now going onto 6 years, 6 years I cannot believe that. When I was diagnosed all I wanted was to see my daughters graduate from High School in 2007 AND I DID!!! Now I want to seem them graduate from college get married and see them happy and hopefully with children!!! LOL Today they are saying the choice is 600mg, but I am still on 800mg. Believe it or not, I tan now, my skin isn't as translucent as it was, water retention, once in a while. Being tired well I think we are all tired from time to time. I haven't gotten the rash since. Diarehha, well again depending on what I eat, some foods do effect it more then others. Heavy menstrual cycle, if you take the birth control pill that will control it some what. I started excercising last year, lost weight, pretty fit and it does help alot!!! Try to avoid as much sugar, keep your carbs down some what and eat plenty of salads/veg/fruit. You do feel better with a little bit more energy!! Sorry for such a lengthy email, but just wanted those to know who have just been diagnosed that IT DOES GET BETTER!!! Lottie I see you post alot and I am glad that you are better now!!!!! Oh my daughters are now 18 and will be going to college this year!!!! They new mommy was going to be okay and I think those with children that are of age that understand let them be a part of it, you don't want them to worry, but it is good that they understand what is going on!!! Warm wishes to everyone!!!! Penny From: Lottie Duthu <lotajamcomcast (DOT) <mailto:lotajam%40comcast.net> net> Subject: [ ] Re: Glivec 800mg " CML " <groups (DOT) <mailto:%40> com> Date: Sunday, January 11, 2009, 1:03 AM Dear Jackie, Please don't ever feel like you are whining. We are here for the purpose of helping to heal one another. Being supportive is part of the healing process, to help you get over the blahs, or whatever else is making your life miserable. No one else understands, but we do. Collectively, we could write a book about side effects. There may be someone else out there who is having the same problem, so go ahead and air it out for all to see and you will feel better after venting. Blessings, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 Hi Zavie, I miss you also!!! It has just been so hectic these past few months...where do i begin..lol. We sold our house in October, yeah!!!!!! moved all the horses back to Florida. Trying to get the girls in school there so we will probably now be going back and forth until they graduate. Remember we have a house there. Right now I am back in Cayman with and is in Florida with her dad. They couldn't leave the horses for any long period of time, and have two stallions in which our son can't take care of..so...that is another storey!!!! LOL I will defintely try to look for you on the chat this week!!!! It was great talking to you again!! and yes just yesterday CML was a death sentence...You are an inspiration to all of us!!! Look at your list on how long you have had it!!! Warm wishes Penny -- On Mon, 1/12/09, Zavie <zmiller@...> wrote: From: Zavie <zmiller@...> Subject: RE: [ ] Re: Glivec 800mg Date: Monday, January 12, 2009, 4:17 PM Hi Penny, Thank you for the update. I miss you on the list and the chats. You have travelled the journey really well. In the early days CML was a death sentence. Today it is a chronic disease with side effects that we have to endure. Tomorrow we look forward to a cure. Zavie PS Penny is # 552 in the Zero Club. 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 Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of Penny Rivers Sent: January 12, 2009 8:29 AM Subject: Re: [ ] Re: Glivec 800mg Hello everyone, Happy New Year to all!! I guess I am now what was called when I first joined a CML Board lurker..lol...I use to post, use to chat, but things just got so hectic and just couldn't find time to post, which is honestly no excuse. I do read the posts periodically and noticed the question on 800mg of Gleevec. I will share my story. I was diagnosed in March 2003. Before that for a few months I was feeling more tired then usual, but that was it. The beginning of the year 2003 I went for my annual check up and of course the bloodwork came back with my WBC up to 65,000. Of course I thought oh I have an infection so just put me on antibidoics. That didn't work. Oh yeah, I live in the Cayman Islands so the doctor wanted me to go to Cleveland Clinic in Florida where he gets some form of " kick back " . I did my own research for we had a friend that had Leukeima years back (acute) and he had a few BMT and lived!!! He went to MD . For those also with children, I have twin daughters and at that time they were 12. My husband and I thought the best approach was to explain to them as much as we could until we could find out what was what. They accompanied us to MD and the doctors, nurses and everyone there were great. I think it was a good idea to let them come for they were old enough to understand and if god forbid something did happen they would be able to deal with it a bit better then it being a surprise and leaving them in the dark. At the time I went Gleevec was on a trial basis with the dosages. I was one of the last lucky ones to be offered the 800mg of gleevec - 4 in the morning, 4 at night. Hey remember Zavie the big orange capsules, now we have little tablets...lol....At the time the doctor stated that they were seeing better responses in the 600mg-800mg then in the 400mg. I didn't have anything to lose so I went on the 800mg. I was told what the side effects were, but I honestly never thought they were going to be as bad as they were. Living in the Cayman Islands, we also had a horsebackriding business in which we rode horses on the beach in the sun......here I am being told not to go in the sun without proper clothing, hats, etc. Sun lotion may not block the sun for the side effects of the medication!!! I went home just happy to know that Gleevec may be the drug to safe my life and I could take any type of side effects. Week number one wasn't so bad, but then it began. Name it I had it........water retention, bone pain, the rash, oh my gosh the rash, that was horrible. I can't even begin to describe it. I felt like I had the flu 24/7. Sitting in my car running my hand through my hair (I had hair down to my waist almost), it started coming out!!! This wasn't suppose to happen but it did!!! I just kept taking the medication hoping beyond hope that the side effects would go away. I probably should have gone off of such a high dosage, but I was so afraid that if i did i wouldn't get better (not recommended to everyone). My bloodwork was being done every week, so exciting for all my bloodwork was coming back positive. Felt like you know what, but otherwise everything was coming back good!!! I think the side effects lasted for about 3-6 mths. One morning I woke up and I started feeling better. I never gave up and I think that is the main thing!!!! It is now going onto 6 years, 6 years I cannot believe that. When I was diagnosed all I wanted was to see my daughters graduate from High School in 2007 AND I DID!!! Now I want to seem them graduate from college get married and see them happy and hopefully with children!!! LOL Today they are saying the choice is 600mg, but I am still on 800mg. Believe it or not, I tan now, my skin isn't as translucent as it was, water retention, once in a while. Being tired well I think we are all tired from time to time. I haven't gotten the rash since. Diarehha, well again depending on what I eat, some foods do effect it more then others. Heavy menstrual cycle, if you take the birth control pill that will control it some what. I started excercising last year, lost weight, pretty fit and it does help alot!!! Try to avoid as much sugar, keep your carbs down some what and eat plenty of salads/veg/fruit. You do feel better with a little bit more energy!! Sorry for such a lengthy email, but just wanted those to know who have just been diagnosed that IT DOES GET BETTER!!! Lottie I see you post alot and I am glad that you are better now!!!!! Oh my daughters are now 18 and will be going to college this year!!!! They new mommy was going to be okay and I think those with children that are of age that understand let them be a part of it, you don't want them to worry, but it is good that they understand what is going on!!! Warm wishes to everyone!!!! Penny From: Lottie Duthu <lotajamcomcast (DOT) <mailto:lotajam%40comcast.net> net> Subject: [ ] Re: Glivec 800mg " CML " <groups (DOT) <mailto:%40> com> Date: Sunday, January 11, 2009, 1:03 AM Dear Jackie, Please don't ever feel like you are whining. We are here for the purpose of helping to heal one another. Being supportive is part of the healing process, to help you get over the blahs, or whatever else is making your life miserable. No one else understands, but we do. Collectively, we could write a book about side effects. There may be someone else out there who is having the same problem, so go ahead and air it out for all to see and you will feel better after venting. Blessings, Lottie Quote Link to comment Share on other sites More sharing options...
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