Guest guest Posted December 12, 2005 Report Share Posted December 12, 2005 Hi Shelia, I am sorry for your loss of your dog, my family and i are animal lovers (with the kids we practically have a zoo) so I understand. Why is the doctor taking you on and off of Gleevec? Maybe that is the reason your counts are staying down....usually you stay on Gleevec unless you are having bad side effects. Taking one on and off for no apparent reason I would think is dangerous. Let us know... Take care of yourself, you'll b fine!!! Penny sheilamonster13 <sheilamonster13@...> wrote: I was diagnosed in August with CML and have been on 400 mgs of Gleevec on and off since. The gleevec shrank my spleen almost back to normal size within two weeks but my counts just wont go back to " normal " my wbc won't get into the normal range and my platelets have been high. I was off the drug at the end of October and went back on after being off three weeks but he had me take it every other day. One week like this sent my platelets to over a million so I took it every day went back after a week for more blood work they were even higher but this past week they had come down to 7000 which I know is still high but it's atleast coming down. My wbc has dropped lower again but my anc count it still OK so far. Has anyone ever had this problem and will things ever get " normal " I was curious how long some people take to get into remission? Then to top it off this past week four people in this small town that I live in passed away ~ all having cancer and they were in there 50's (I'm 37) and my dog who would've been 16 at the end of January died. So, I've been really freaked out this whole week, very emotional. My family thinks I'm over reacting, I don't know, maybe I am. I just need some support I guess that's why I'm posting this message. Thanks to all who listened & replies. Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2005 Report Share Posted December 12, 2005 At 02:35 AM 12/12/05 +0000, you wrote: >I was diagnosed in August with CML and have been on 400 mgs of >Gleevec on and off since. The gleevec shrank my spleen almost back >to normal size within two weeks but my counts just wont go back >to " normal " my wbc won't get into the normal range and my platelets >have been high. I was off the drug at the end of October and went >back on after being off three weeks but he had me take it every >other day. One week like this sent my platelets to over a million so >I took it every day went back after a week for more blood work they >were even higher but this past week they had come down to 7000 which >I know is still high but it's atleast coming down. Hi Sheila, You don't say why you were taken off the drug if your white count is still elevated (and also high platelets)???? People with high platelets are usually on a 2nd drug (? anagrelide) to lower the platelets. How high is your white count? The first level of response is the hematological response (sometimes called hema. remission) where all the blood counts return to normal. This response is usually seen in the first 3 months. Are you being seen by a CML specialist?............I think this is especially important when you are not having an easy response to the drug. What was your doctor's reason for you taking the drug every other day????? some of these things you are doing do not seem typical......which is why I am wondering if this is a local oncologist making these decisions.....or a CML specialist? Most newly diagnosed CMLers do very well on this drug......maybe you can give us more information so that we can tell your what we think, or questions you might ask your doctor. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2005 Report Share Posted December 12, 2005 Hi , I agree with you that Sheila needs to be advised by a CML expert. In the olden days, Hydroxyurea was given until the WBCs came down into the normal range and then Gleevec was introduced. Has this practice changed? Zavie Re: [ ] Freaking out again! At 02:35 AM 12/12/05 +0000, you wrote: >I was diagnosed in August with CML and have been on 400 mgs of >Gleevec on and off since. The gleevec shrank my spleen almost back >to normal size within two weeks but my counts just wont go back >to " normal " my wbc won't get into the normal range and my platelets >have been high. I was off the drug at the end of October and went >back on after being off three weeks but he had me take it every >other day. One week like this sent my platelets to over a million so >I took it every day went back after a week for more blood work they >were even higher but this past week they had come down to 7000 which >I know is still high but it's atleast coming down. Hi Sheila, You don't say why you were taken off the drug if your white count is still elevated (and also high platelets)???? People with high platelets are usually on a 2nd drug (? anagrelide) to lower the platelets. How high is your white count? The first level of response is the hematological response (sometimes called hema. remission) where all the blood counts return to normal. This response is usually seen in the first 3 months. Are you being seen by a CML specialist?............I think this is especially important when you are not having an easy response to the drug. What was your doctor's reason for you taking the drug every other day????? some of these things you are doing do not seem typical......which is why I am wondering if this is a local oncologist making these decisions.....or a CML specialist? Most newly diagnosed CMLers do very well on this drug......maybe you can give us more information so that we can tell your what we think, or questions you might ask your doctor. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2005 Report Share Posted December 12, 2005 At 12:27 AM 12/12/05 -0500, you wrote: >Hi , > >I agree with you that Sheila needs to be advised by a CML expert. In the >olden days, Hydroxyurea was given until the WBCs came down into the >normal range and then Gleevec was introduced. Has this practice changed? > >Zavie Hi Zavie, Sheila has clarified that her white count is not elevated.....and she is stopping the drug because it is low. When white counts are very elevated (in the 200Ks or so).....many docs do use hydrea first to bring the count down before starting Gleevec. Also, there is a 2nd drug (can't think of the name) that Dr. Druker puts you on if you start with a white count above something like 20K.....for the uric acid produced. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2005 Report Share Posted December 12, 2005 Hi, , Tom was on hydrea and allopurinol (for the uric acid) when he was first dx. Barb Neddo http://www.caringbridge.org/wi/tomneddo On Dec 12, 2005, at 2:01 AM, Cogan wrote: > At 12:27 AM 12/12/05 -0500, you wrote: >> Hi , >> >> I agree with you that Sheila needs to be advised by a CML expert. In >> the >> olden days, Hydroxyurea was given until the WBCs came down into the >> normal range and then Gleevec was introduced. Has this practice >> changed? >> >> Zavie > > Hi Zavie, > Sheila has clarified that her white count is not elevated.....and she > is > stopping > the drug because it is low. When white counts are very elevated (in > the > 200Ks > or so).....many docs do use hydrea first to bring the count down before > starting > Gleevec. Also, there is a 2nd drug (can't think of the name) that Dr. > Druker puts > you on if you start with a white count above something like > 20K.....for the > uric > acid produced. > > C. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2005 Report Share Posted December 12, 2005 Shelia I guess I am rather different in one respect I have had CML for a very long time.. was on two other meds over the years and have been on Gleevec just about a year now.. My doctor will not let up on Gleevec. in fact even tho my counts are low WBC 3.1 and Platlets at just around 19,000 and hem at just over 100,000 my doctor say unless I am on 400 mil a day it will be little good I was on 300 a day with my counts a bit higher but I was to him last wed and he put me on a higher dose he claims that in order for gleevec to be effective you must not miss a day and at least 400 mi a day.. not sure if this applys to your situation..I do hope things calm down and you have a very Happy Christmass SkipD --- sheilamonster13 <sheilamonster13@...> wrote: > I was diagnosed in August with CML and have been on > 400 mgs of > Gleevec on and off since. The gleevec shrank my > spleen almost back > to normal size within two weeks but my counts just > wont go back > to " normal " my wbc won't get into the normal range > and my platelets > have been high. I was off the drug at the end of > October and went > back on after being off three weeks but he had me > take it every > other day. One week like this sent my platelets to > over a million so > I took it every day went back after a week for more > blood work they > were even higher but this past week they had come > down to 7000 which > I know is still high but it's atleast coming down. > My wbc has > dropped lower again but my anc count it still OK so > far. Has anyone > ever had this problem and will things ever get > " normal " I was > curious how long some people take to get into > remission? Then to > top it off this past week four people in this small > town that I live > in passed away ~ all having cancer and they were in > there 50's (I'm > 37) and my dog who would've been 16 at the end of > January died. So, > I've been really freaked out this whole week, very > emotional. My > family thinks I'm over reacting, I don't know, maybe > I am. I just > need some support I guess that's why I'm posting > this message. > Thanks to all who listened & replies. > > Sheila > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2005 Report Share Posted December 12, 2005 Hi Skip, Your doctor may be just a little bit out of date. The latest information from OHSU (Dr. Mauro) says that the minimum effective dose for Gleevec is 350 mg. Zavie Re: [ ] Freaking out again! Shelia I guess I am rather different in one respect I have had CML for a very long time.. was on two other meds over the years and have been on Gleevec just about a year now.. My doctor will not let up on Gleevec. in fact even tho my counts are low WBC 3.1 and Platlets at just around 19,000 and hem at just over 100,000 my doctor say unless I am on 400 mil a day it will be little good I was on 300 a day with my counts a bit higher but I was to him last wed and he put me on a higher dose he claims that in order for gleevec to be effective you must not miss a day and at least 400 mi a day.. not sure if this applys to your situation..I do hope things calm down and you have a very Happy Christmass SkipD --- sheilamonster13 <sheilamonster13@...> wrote: > I was diagnosed in August with CML and have been on > 400 mgs of > Gleevec on and off since. The gleevec shrank my > spleen almost back > to normal size within two weeks but my counts just > wont go back > to " normal " my wbc won't get into the normal range > and my platelets > have been high. I was off the drug at the end of > October and went > back on after being off three weeks but he had me > take it every > other day. One week like this sent my platelets to > over a million so > I took it every day went back after a week for more > blood work they > were even higher but this past week they had come > down to 7000 which > I know is still high but it's atleast coming down. > My wbc has > dropped lower again but my anc count it still OK so > far. Has anyone > ever had this problem and will things ever get > " normal " I was > curious how long some people take to get into > remission? Then to > top it off this past week four people in this small > town that I live > in passed away ~ all having cancer and they were in > there 50's (I'm > 37) and my dog who would've been 16 at the end of > January died. So, > I've been really freaked out this whole week, very > emotional. My > family thinks I'm over reacting, I don't know, maybe > I am. I just > need some support I guess that's why I'm posting > this message. > Thanks to all who listened & replies. > > Sheila > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2005 Report Share Posted December 12, 2005 Zavie thanks I told my GP and he said if my platlets get down he will transfuse me it has been a year since I had any transfusions.. I had eight units that time over a three week period..I will tell my GP maybe he will consult with the main man but until my platlets go down to 10,000 the will leave me on 400 mils a day... sure hope you have a great Christmas and to all on the and others my very best wishes for a Healthy and Happy Christmas.. will be on and off until I get some energy back.. Skipd --- Zavie miller <zmiller@...> wrote: > > Hi Skip, > > Your doctor may be just a little bit out of date. > The latest information > from OHSU (Dr. Mauro) says that the minimum > effective dose for Gleevec > is 350 mg. > > Zavie > > > > Re: [ ] Freaking out again! > > Shelia > I guess I am rather different in one respect I have > had CML for a very long time.. was on two other meds > over the years and have been on Gleevec just about a > year now.. My doctor will not let up on Gleevec. in > fact even tho my counts are low WBC 3.1 and Platlets > at just around 19,000 and hem at just over 100,000 > my doctor say unless I am on 400 mil a day it will > be > little good > I was on 300 a day with my counts a bit higher but I > was to him last wed and he put me on a higher dose > he > claims that in order for gleevec to be effective you > must not miss a day and at least 400 mi a day.. not > sure if this applys to your situation..I do hope > things calm down and you have a very Happy > Christmass > SkipD > --- sheilamonster13 <sheilamonster13@...> > wrote: > > > I was diagnosed in August with CML and have been > on > > 400 mgs of > > Gleevec on and off since. The gleevec shrank my > > spleen almost back > > to normal size within two weeks but my counts just > > wont go back > > to " normal " my wbc won't get into the normal range > > and my platelets > > have been high. I was off the drug at the end of > > October and went > > back on after being off three weeks but he had me > > take it every > > other day. One week like this sent my platelets to > > over a million so > > I took it every day went back after a week for > more > > blood work they > > were even higher but this past week they had come > > down to 7000 which > > I know is still high but it's atleast coming down. > > > My wbc has > > dropped lower again but my anc count it still OK > so > > far. Has anyone > > ever had this problem and will things ever get > > " normal " I was > > curious how long some people take to get into > > remission? Then to > > top it off this past week four people in this > small > > town that I live > > in passed away ~ all having cancer and they were > in > > there 50's (I'm > > 37) and my dog who would've been 16 at the end of > > January died. So, > > I've been really freaked out this whole week, very > > emotional. My > > family thinks I'm over reacting, I don't know, > maybe > > I am. I just > > need some support I guess that's why I'm posting > > this message. > > Thanks to all who listened & replies. > > > > Sheila > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2005 Report Share Posted December 12, 2005 Hi Sheila, Funny but it has been my experience in the last 5 years that many of us have these problems when first starting Gleevec. I too had to have my Gleevec stopped and then restarted every @ other day 300 mgs and then 300one day and 400 the next and finally we worked back up to the standard dose of 400 every day once my counts became stable. I think your Oncologist made the right decision. Most Oncologist who are not as experienced with Gleevec wouldn't have thought to do this ... In these cases where they are trying to get your counts under control is absolutely where they would take you off so as not to let your counts get to a dangerous level. Also keep in mind that it is a sign that the Gleevec is working and killing off those nasty bad white cells which we had too much of when diagnosed. So being on the low side doesn't mean its such a bad thing with the exception of you will want to be careful since your immune system is unable to protect you form things such as colds etc. Gradually your body will get use to the medicine and your counts will stabilize. It sounds right now like Gleevec is doing what it's suppose to be doing. When I first started my Onc sent me to the lab every other day just to make sure I was ok. As for your emotions- that's normal too... almost all of us have been there. It takes some time to adjust to our new life:0 ) I say that with a smile because I know just how much my life has changed since being dx'd. Do the best you can to take it easy and convince yourself that it is all going to be ok. See how long I have been here and I was dx'd at 35 ez Dx 5-2000 Interferon/arc/ hydrea Gleevec 6-2001 400 MGS PCRU 8-2001 essage: 6 Date: Sun, 11 Dec 2005 19:42:47 -0800 From: Cogan <ncogan@...> Subject: Re: Freaking out again! At 02:35 AM 12/12/05 +0000, you wrote: >I was diagnosed in August with CML and have been on 400 mgs of Gleevec >on and off since. The gleevec shrank my spleen almost back to normal >size within two weeks but my counts just wont go back to " normal " my >wbc won't get into the normal range and my platelets have been high. I >was off the drug at the end of October and went back on after being off >three weeks but he had me take it every other day. One week like this >sent my platelets to over a million so I took it every day went back >after a week for more blood work they were even higher but this past >week they had come down to 7000 which I know is still high but it's >atleast coming down. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2005 Report Share Posted December 15, 2005 Shelia, I too freaked out and when i turned to my internal senses, I calmed down and my counts came down for I believed they would and they did. Worry is normal but too much worry doesn't do anyone any good. What ever is going to happen will happen worry or not. Stay positive and you must believe it or else your working against your own body... BELIEVE!!! Skip Duffie <skipd_2002@...> wrote: Shelia I guess I am rather different in one respect I have had CML for a very long time.. was on two other meds over the years and have been on Gleevec just about a year now.. My doctor will not let up on Gleevec. in fact even tho my counts are low WBC 3.1 and Platlets at just around 19,000 and hem at just over 100,000 my doctor say unless I am on 400 mil a day it will be little good I was on 300 a day with my counts a bit higher but I was to him last wed and he put me on a higher dose he claims that in order for gleevec to be effective you must not miss a day and at least 400 mi a day.. not sure if this applys to your situation..I do hope things calm down and you have a very Happy Christmass SkipD --- sheilamonster13 <sheilamonster13@...> wrote: > I was diagnosed in August with CML and have been on > 400 mgs of > Gleevec on and off since. The gleevec shrank my > spleen almost back > to normal size within two weeks but my counts just > wont go back > to " normal " my wbc won't get into the normal range > and my platelets > have been high. I was off the drug at the end of > October and went > back on after being off three weeks but he had me > take it every > other day. One week like this sent my platelets to > over a million so > I took it every day went back after a week for more > blood work they > were even higher but this past week they had come > down to 7000 which > I know is still high but it's atleast coming down. > My wbc has > dropped lower again but my anc count it still OK so > far. Has anyone > ever had this problem and will things ever get > " normal " I was > curious how long some people take to get into > remission? Then to > top it off this past week four people in this small > town that I live > in passed away ~ all having cancer and they were in > there 50's (I'm > 37) and my dog who would've been 16 at the end of > January died. So, > I've been really freaked out this whole week, very > emotional. My > family thinks I'm over reacting, I don't know, maybe > I am. I just > need some support I guess that's why I'm posting > this message. > Thanks to all who listened & replies. > > Sheila > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2005 Report Share Posted December 15, 2005 I agree with this... I have been told that over the years being on a lot of Myleran that my attitude, which is what will be will be, has helped in my fight with CML. I do have a strong belief, which I try not to spout about too much, as I know there are others of different belief than my own. No matter what you believe in worry does not help, in fact I am told that if you can set your mind on other things any drug Gleevec or other will act much stronger if your mind is in the right place.. I guess its like the car on a slippery road, heading for a ditch, it will stop or go over no matter how hard you fight the wheel.. from the little prince I like the quote " it is only with the heart that one sees rightly, what is essential is invisible to the eye " have a healthy, happy, Christmas.. SkipD --- Yrulooknback <yrulooknback@...> wrote: > Shelia, I too freaked out and when i turned to my > internal senses, I calmed down and my counts came > down for I believed they would and they did. Worry > is normal but too much worry doesn't do anyone any > good. What ever is going to happen will happen worry > or not. Stay positive and you must believe it or > else your working against your own body... > > BELIEVE!!! > > Skip Duffie <skipd_2002@...> wrote: > Shelia > I guess I am rather different in one respect I have > had CML for a very long time.. was on two other meds > over the years and have been on Gleevec just about a > year now.. My doctor will not let up on Gleevec. in > fact even tho my counts are low WBC 3.1 and Platlets > at just around 19,000 and hem at just over 100,000 > my doctor say unless I am on 400 mil a day it will > be > little good > I was on 300 a day with my counts a bit higher but I > was to him last wed and he put me on a higher dose > he > claims that in order for gleevec to be effective you > must not miss a day and at least 400 mi a day.. not > sure if this applys to your situation..I do hope > things calm down and you have a very Happy > Christmass > SkipD > --- sheilamonster13 <sheilamonster13@...> > wrote: > > > I was diagnosed in August with CML and have been > on > > 400 mgs of > > Gleevec on and off since. The gleevec shrank my > > spleen almost back > > to normal size within two weeks but my counts just > > wont go back > > to " normal " my wbc won't get into the normal range > > and my platelets > > have been high. I was off the drug at the end of > > October and went > > back on after being off three weeks but he had me > > take it every > > other day. One week like this sent my platelets to > > over a million so > > I took it every day went back after a week for > more > > blood work they > > were even higher but this past week they had come > > down to 7000 which > > I know is still high but it's atleast coming down. > > > My wbc has > > dropped lower again but my anc count it still OK > so > > far. Has anyone > > ever had this problem and will things ever get > > " normal " I was > > curious how long some people take to get into > > remission? Then to > > top it off this past week four people in this > small > > town that I live > > in passed away ~ all having cancer and they were > in > > there 50's (I'm > > 37) and my dog who would've been 16 at the end of > > January died. So, > > I've been really freaked out this whole week, very > > emotional. My > > family thinks I'm over reacting, I don't know, > maybe > > I am. I just > > need some support I guess that's why I'm posting > > this message. > > Thanks to all who listened & replies. > > > > Sheila > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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