Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 Thanks so much for your reply suzzie. I am trying to absorb as much as possible right now. ________________________________ From: suzzienovember <suzzienovember@...> Sent: Tuesday, February 24, 2009 5:53:11 PM Subject: [ ] To Debbie Seger Hi Debbie: Welcome to our group. I hope you get all the help you need from everyone. I am sure someone will be able to tell you about a good oncologist in Georgia. That is one of the good things about posting your problems and feelings. You will always find somebody from somewhere who can help or share. Some of the people are new like you, and others are here awhile. Its all very new to you, but as you educate yourself and read others posts it will get easier. It was just 10years for me in Dec. with CML. Take one day at a time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Unfortunately this was the same for me. It does get better but I do remember the first 3 months especially as things in the body fight off the bad cells, my body hurt alot. The pain in my thighs were really bad and today, 3 years later, that is where a majority of my bone and muscle pain is at. Rest when you body says rest. The more you try to fight your body the worse things seem to get. Don't push yourself. Listen to your body. Get family and friends to help. If they ask what they can do for you, tell them what you need. Take it day by day! Hugs & Hope 36 Wife and mom to 3 (13,10,8) CML 5/13/05 Gleevec 800mg until 8/07 Sprycel 100mg since 9/07 **************You're invited to Hollywood's biggest party: Get s updates, red carpet pics and more at Moviefone. (http://movies.aol.com/oscars-academy-awards?ncid=emlcntusmovi00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Debbie, Well if you have any questions your in the right place, there are allot of very knowledgeable people within this group and I am sure you will get an answer. It is very scary when you first get DXed because as soon as you hear Leukemia you think it is a death sentence. Luckily for those of us with CML that is no longer the case. Granted CML has changed my life in a major way but at least from the looks of things I will be around to see my grandkids. I warned my son(he just turned 15) no kids until he is 25, I am not ready to be a grandparent yet..lol. Hang in there Debbie, your life may change but you will be okay. Terry On Tue, Feb 24, 2009 at 11:35 PM, Debbie Segers <segersdebbie@...>wrote: > Thanks so much for your reply suzzie. I am trying to absorb as much as > possible right now. > > ________________________________ > From: suzzienovember <suzzienovember@...<suzzienovember%40> > > > <%40> > Sent: Tuesday, February 24, 2009 5:53:11 PM > Subject: [ ] To Debbie Seger > > > Hi Debbie: Welcome to our group. I hope you get all the help you > need from everyone. I am sure someone will be able to tell you about a > good oncologist in Georgia. That is one of the good things about > posting your problems and feelings. You will always find somebody from > somewhere who can help or share. > Some of the people are new like you, and others are here awhile. > Its all very new to you, but as you educate yourself and read others > posts it will get easier. > It was just 10years for me in Dec. with CML. Take one day at a > time. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Thansk so much for all the support. I have been hmoe from work for two days now because I can hardly go. My body feels like I have a severe case of the flu. I have been on the Gleevec for 4 days now. I am having headaches. Both sides of my neck hurt, Every muscle in my body is aching severely, I am very tired during the day and can't sleep at night. I even made my self stay up so that I can try to sleep at night. Food taste strange to me. Things that I normally like taste horrible to me. I am getting raw places in my mouth and a sore throat. Are these normal side effects? ________________________________ From: Terry Dailey <terrydailey@...> Sent: Thursday, February 26, 2009 9:21:12 AM Subject: Re: [ ] To Debbie Seger Debbie, Well if you have any questions your in the right place, there are allot of very knowledgeable people within this group and I am sure you will get an answer. It is very scary when you first get DXed because as soon as you hear Leukemia you think it is a death sentence. Luckily for those of us with CML that is no longer the case. Granted CML has changed my life in a major way but at least from the looks of things I will be around to see my grandkids. I warned my son(he just turned 15) no kids until he is 25, I am not ready to be a grandparent yet..lol. Hang in there Debbie, your life may change but you will be okay. Terry On Tue, Feb 24, 2009 at 11:35 PM, Debbie Segers <segersdebbie>wrote: > Thanks so much for your reply suzzie. I am trying to absorb as much as > possible right now. > > ____________ _________ _________ __ > From: suzzienovember <suzzienovember<suzzienovember% 40> > > > groups (DOT) com <%40groups .com> > Sent: Tuesday, February 24, 2009 5:53:11 PM > Subject: [ ] To Debbie Seger > > > Hi Debbie: Welcome to our group. I hope you get all the help you > need from everyone. I am sure someone will be able to tell you about a > good oncologist in Georgia. That is one of the good things about > posting your problems and feelings. You will always find somebody from > somewhere who can help or share. > Some of the people are new like you, and others are here awhile. > Its all very new to you, but as you educate yourself and read others > posts it will get easier. > It was just 10years for me in Dec. with CML. Take one day at a > time. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Hi Debbie, I'm sorry you feel so terribly. I wonder if you do in fact have a flu or other similar type of viral infection because what you describe is not the typical reaction to Gleevec at all. Tracey > > Thansk so much for all the support. I have been hmoe from work for two days now because I can hardly go. My body feels like I have a severe case of the flu. I have been on the Gleevec for 4 days now. I am having headaches. Both sides of my neck hurt, Every muscle in my body is aching severely, I am very tired during the day and can't sleep at night. I even made my self stay up so that I can try to sleep at night. Food taste strange to me. Things that I normally like taste horrible to me. I am getting raw places in my mouth and a sore throat. Are these normal side effects? > > > > > ________________________________ > From: Terry Dailey <terrydailey@...> > > Sent: Thursday, February 26, 2009 9:21:12 AM > Subject: Re: [ ] To Debbie Seger > > > Debbie, > > Well if you have any questions your in the right place, there are allot of > very knowledgeable people within this group and I am sure you will get an > answer. It is very scary when you first get DXed because as soon as you hear > Leukemia you think it is a death sentence. Luckily for those of us with CML > that is no longer the case. Granted CML has changed my life in a major way > but at least from the looks of things I will be around to see my grandkids. > I warned my son(he just turned 15) no kids until he is 25, I am not ready to > be a grandparent yet..lol. > Hang in there Debbie, your life may change but you will be okay. > > Terry > > On Tue, Feb 24, 2009 at 11:35 PM, Debbie Segers <segersdebbie@ >wrote: > > > Thanks so much for your reply suzzie. I am trying to absorb as much as > > possible right now. > > > > ____________ _________ _________ __ > > From: suzzienovember <suzzienovember<suzzienovember% 40> > > > > > groups (DOT) com <%40groups .com> > > Sent: Tuesday, February 24, 2009 5:53:11 PM > > Subject: [ ] To Debbie Seger > > > > > > Hi Debbie: Welcome to our group. I hope you get all the help you > > need from everyone. I am sure someone will be able to tell you about a > > good oncologist in Georgia. That is one of the good things about > > posting your problems and feelings. You will always find somebody from > > somewhere who can help or share. > > Some of the people are new like you, and others are here awhile. > > Its all very new to you, but as you educate yourself and read others > > posts it will get easier. > > It was just 10years for me in Dec. with CML. Take one day at a > > time. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Debbie, I had and still have every side effect you listed except the sore throat for the past nine months while on Gleevec.My pain is getting worse as I progress with the CML even though I have reached a 3 log reduction.I think they are normal side effects but you should always discuss them with your Dr. Some people have side effects at first but then they ease up some never ease up.Everyone is different from what I am hearing.I also have severe swelling,rash,weight fluctuation of 10 pounds during any given week,eye pain,vision issues ALOT of bone/muscle/joint pain and just plain feel like Sh.. most days.I keep waiting for the side effects to ease up as it has for others but no such luck yet.I hope you feel better soon. SharonS In , Debbie Segers <segersdebbie@...> wrote: > > Thansk so much for all the support. I have been hmoe from work for two days now because I can hardly go. My body feels like I have a severe case of the flu. I have been on the Gleevec for 4 days now. I am having headaches. Both sides of my neck hurt, Every muscle in my body is aching severely, I am very tired during the day and can't sleep at night. I even made my self stay up so that I can try to sleep at night. Food taste strange to me. Things that I normally like taste horrible to me. I am getting raw places in my mouth and a sore throat. Are these normal side effects? > > > > > ________________________________ > From: Terry Dailey <terrydailey@...> > > Sent: Thursday, February 26, 2009 9:21:12 AM > Subject: Re: [ ] To Debbie Seger > > > Debbie, > > Well if you have any questions your in the right place, there are allot of > very knowledgeable people within this group and I am sure you will get an > answer. It is very scary when you first get DXed because as soon as you hear > Leukemia you think it is a death sentence. Luckily for those of us with CML > that is no longer the case. Granted CML has changed my life in a major way > but at least from the looks of things I will be around to see my grandkids. > I warned my son(he just turned 15) no kids until he is 25, I am not ready to > be a grandparent yet..lol. > Hang in there Debbie, your life may change but you will be okay. > > Terry > > On Tue, Feb 24, 2009 at 11:35 PM, Debbie Segers <segersdebbie@ >wrote: > > > Thanks so much for your reply suzzie. I am trying to absorb as much as > > possible right now. > > > > ____________ _________ _________ __ > > From: suzzienovember <suzzienovember<suzzienovember% 40> > > > > > groups (DOT) com <%40groups .com> > > Sent: Tuesday, February 24, 2009 5:53:11 PM > > Subject: [ ] To Debbie Seger > > > > > > Hi Debbie: Welcome to our group. I hope you get all the help you > > need from everyone. I am sure someone will be able to tell you about a > > good oncologist in Georgia. That is one of the good things about > > posting your problems and feelings. You will always find somebody from > > somewhere who can help or share. > > Some of the people are new like you, and others are here awhile. > > Its all very new to you, but as you educate yourself and read others > > posts it will get easier. > > It was just 10years for me in Dec. with CML. Take one day at a > > time. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Debbie, No problem, that is what we are all here for is to help each other. I would let your doc know your side effects so he can give you something to help manage them. Odds are your side effects will lessen, and if they don't they can be managed or they can try one of the other drugs out there for treatment. You need to sleep so I would ask for something to help you sleep for sure. I also get a strange taste in my mouth sometimes even after being on Gleevec since 04. Here is what I take.. 4 500mgs of Loritabs a day 3 1mg of Xanaxx a day 2 25mg of Promethazine a day(for nausa) Now this works for me but may not for others. Just give the Gleevec sometime before you switch because in most people the side effects go away or lessen allot. The main thing is to try and not dwell on the bad stuff. I know that is easier said then done. CML can really change a persons life but the worst part is the first few months. My doc retired and the one that sees me now wanted to try something else but I said no way. Even with the side effects I am having I can tolerate the Gleevec and it has me in remission and I am not fixing anything that is not broke. Terry On Thu, Feb 26, 2009 at 2:44 PM, serenitywon <serenitywon@...> wrote: > Debbie, > I had and still have every side effect you listed except the sore > throat for the past nine months while on Gleevec.My pain is getting > worse as I progress with the CML even though I have reached a 3 log > reduction.I think they are normal side effects but you should always > discuss them with your Dr. Some people have side effects at first but > then they ease up some never ease up.Everyone is different from what > I am hearing.I also have severe swelling,rash,weight fluctuation of > 10 pounds during any given week,eye pain,vision issues ALOT of > bone/muscle/joint pain and just plain feel like Sh.. most days.I keep > waiting for the side effects to ease up as it has for others but no > such luck yet.I hope you feel better soon. > SharonS > > > In <%40>, Debbie Segers > <segersdebbie@...> wrote: > > > > Thansk so much for all the support. I have been hmoe from work for > two days now because I can hardly go. My body feels like I have a > severe case of the flu. I have been on the Gleevec for 4 days now. > I am having headaches. Both sides of my neck hurt, Every muscle in > my body is aching severely, I am very tired during the day and can't > sleep at night. I even made my self stay up so that I can try to > sleep at night. Food taste strange to me. Things that I normally > like taste horrible to me. I am getting raw places in my mouth and a > sore throat. Are these normal side effects? > > > > > > > > > > ________________________________ > > From: Terry Dailey <terrydailey@...> > > > <%40> > > Sent: Thursday, February 26, 2009 9:21:12 AM > > Subject: Re: [ ] To Debbie Seger > > > > > > Debbie, > > > > Well if you have any questions your in the right place, there are > allot of > > very knowledgeable people within this group and I am sure you will > get an > > answer. It is very scary when you first get DXed because as soon as > you hear > > Leukemia you think it is a death sentence. Luckily for those of us > with CML > > that is no longer the case. Granted CML has changed my life in a > major way > > but at least from the looks of things I will be around to see my > grandkids. > > I warned my son(he just turned 15) no kids until he is 25, I am not > ready to > > be a grandparent yet..lol. > > Hang in there Debbie, your life may change but you will be okay. > > > > Terry > > > > On Tue, Feb 24, 2009 at 11:35 PM, Debbie Segers <segersdebbie@ > >wrote: > > > > > Thanks so much for your reply suzzie. I am trying to absorb as > much as > > > possible right now. > > > > > > ____________ _________ _________ __ > > > From: suzzienovember <suzzienovember<suzzienovember% > 40> > > > > > > > groups (DOT) com <%40groups .com> > > > Sent: Tuesday, February 24, 2009 5:53:11 PM > > > Subject: [ ] To Debbie Seger > > > > > > > > > Hi Debbie: Welcome to our group. I hope you get all the help you > > > need from everyone. I am sure someone will be able to tell you > about a > > > good oncologist in Georgia. That is one of the good things about > > > posting your problems and feelings. You will always find somebody > from > > > somewhere who can help or share. > > > Some of the people are new like you, and others are here awhile. > > > Its all very new to you, but as you educate yourself and read > others > > > posts it will get easier. > > > It was just 10years for me in Dec. with CML. Take one day at a > > > time. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 I did talk to the doctor yesterday and he said the same things you guys said that the side effects are normal and shoud get better. He put me on Oxycodone 10 mg and I took one today. It did help me a great deal. ________________________________ From: Terry Dailey <terrydailey@...> Sent: Friday, February 27, 2009 10:08:49 AM Subject: Re: [ ] To Debbie Seger Debbie, No problem, that is what we are all here for is to help each other. I would let your doc know your side effects so he can give you something to help manage them. Odds are your side effects will lessen, and if they don't they can be managed or they can try one of the other drugs out there for treatment. You need to sleep so I would ask for something to help you sleep for sure. I also get a strange taste in my mouth sometimes even after being on Gleevec since 04. Here is what I take.. 4 500mgs of Loritabs a day 3 1mg of Xanaxx a day 2 25mg of Promethazine a day(for nausa) Now this works for me but may not for others. Just give the Gleevec sometime before you switch because in most people the side effects go away or lessen allot. The main thing is to try and not dwell on the bad stuff. I know that is easier said then done. CML can really change a persons life but the worst part is the first few months. My doc retired and the one that sees me now wanted to try something else but I said no way. Even with the side effects I am having I can tolerate the Gleevec and it has me in remission and I am not fixing anything that is not broke. Terry On Thu, Feb 26, 2009 at 2:44 PM, serenitywon <serenitywon> wrote: > Debbie, > I had and still have every side effect you listed except the sore > throat for the past nine months while on Gleevec.My pain is getting > worse as I progress with the CML even though I have reached a 3 log > reduction.I think they are normal side effects but you should always > discuss them with your Dr. Some people have side effects at first but > then they ease up some never ease up.Everyone is different from what > I am hearing.I also have severe swelling,rash, weight fluctuation of > 10 pounds during any given week,eye pain,vision issues ALOT of > bone/muscle/ joint pain and just plain feel like Sh.. most days.I keep > waiting for the side effects to ease up as it has for others but no > such luck yet.I hope you feel better soon. > SharonS > > > In groups (DOT) com <%40groups .com>, Debbie Segers > <segersdebbie@ ....> wrote: > > > > Thansk so much for all the support. I have been hmoe from work for > two days now because I can hardly go. My body feels like I have a > severe case of the flu. I have been on the Gleevec for 4 days now. > I am having headaches. Both sides of my neck hurt, Every muscle in > my body is aching severely, I am very tired during the day and can't > sleep at night. I even made my self stay up so that I can try to > sleep at night. Food taste strange to me. Things that I normally > like taste horrible to me. I am getting raw places in my mouth and a > sore throat. Are these normal side effects? > > > > > > > > > > ____________ _________ _________ __ > > From: Terry Dailey <terrydailey@ ...> > > > groups (DOT) com <%40groups .com> > > Sent: Thursday, February 26, 2009 9:21:12 AM > > Subject: Re: [ ] To Debbie Seger > > > > > > Debbie, > > > > Well if you have any questions your in the right place, there are > allot of > > very knowledgeable people within this group and I am sure you will > get an > > answer. It is very scary when you first get DXed because as soon as > you hear > > Leukemia you think it is a death sentence. Luckily for those of us > with CML > > that is no longer the case. Granted CML has changed my life in a > major way > > but at least from the looks of things I will be around to see my > grandkids. > > I warned my son(he just turned 15) no kids until he is 25, I am not > ready to > > be a grandparent yet..lol. > > Hang in there Debbie, your life may change but you will be okay. > > > > Terry > > > > On Tue, Feb 24, 2009 at 11:35 PM, Debbie Segers <segersdebbie@ > >wrote: > > > > > Thanks so much for your reply suzzie. I am trying to absorb as > much as > > > possible right now. > > > > > > ____________ _________ _________ __ > > > From: suzzienovember <suzzienovember<suzzienov ember% > 40> > > > > > > > groups (DOT) com <%40groups .com> > > > Sent: Tuesday, February 24, 2009 5:53:11 PM > > > Subject: [ ] To Debbie Seger > > > > > > > > > Hi Debbie: Welcome to our group. I hope you get all the help you > > > need from everyone. I am sure someone will be able to tell you > about a > > > good oncologist in Georgia. That is one of the good things about > > > posting your problems and feelings. You will always find somebody > from > > > somewhere who can help or share. > > > Some of the people are new like you, and others are here awhile. > > > Its all very new to you, but as you educate yourself and read > others > > > posts it will get easier. > > > It was just 10years for me in Dec. with CML. Take one day at a > > > time. > > > > > > Quote Link to comment Share on other sites More sharing options...
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