Guest guest Posted August 23, 2009 Report Share Posted August 23, 2009 hello everyone, as i just stated i am new to mr. toads wild ride. my 37 year old son who is d.d. and lives with me was just diagnosed thursday. he is goint to start on gleevec as soon as the drug company mails it to us.what can i expect? as a mother who just happens to have been a nurse i see the world from both sides and it scares the bejinkies for the tendereyed out there. how does one deal with the day to day? when will i notice he is starting to be more like himself and not so blah all of the time. how are the side-effects? i know i am just blasting everyone with questions but you are the source. family andpeople living with leukemia every day. thank yoy so much for listing to my rantings . it is just wonderful to know we are not alone in this journey back to life. thank you a grateful mother Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2009 Report Share Posted August 23, 2009 Hi Peggy, Welcome to the club that nobody really wants to be a member of. CML is a very treatable disease, especially when it is diagnosed in the chronic phase. With Gleevec all that is required is to take one pill daily. There are very few side effects and those that do appear are usually gone after a month or two. Make sure that you get copies of all the tests that are done. This will make it very easy to follow his progress. Also, just ask questions here. There are many very knowledgeable people on this site. More so than the average doctor. Treating CML is very specialized. What do you mean by d.d.? Zavie Zavie (age 71) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of peggybieber Sent: August 23, 2009 12:36 AM Subject: [ ] new to this wild ride hello everyone, as i just stated i am new to mr. toads wild ride. my 37 year old son who is d.d. and lives with me was just diagnosed thursday. he is goint to start on gleevec as soon as the drug company mails it to us.what can i expect? as a mother who just happens to have been a nurse i see the world from both sides and it scares the bejinkies for the tendereyed out there. how does one deal with the day to day? when will i notice he is starting to be more like himself and not so blah all of the time. how are the side-effects? i know i am just blasting everyone with questions but you are the source. family andpeople living with leukemia every day. thank yoy so much for listing to my rantings . it is just wonderful to know we are not alone in this journey back to life. thank you a grateful mother Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 Peggy, I started Gleevec in 1999 on one of the early trials and am still on it. I recently retired from teaching high school math. As Zavie told you, most of the symptoms are not bad enough to interfere with a normal life. If you continue to read the posts, you probably see them all mentioned. I had severe cramps, especially in my legs and feet, when I first started, but those have gotten better. I had some problems with nausea, but have learned to control that by eating a good meal before taking the Gleevec. My blood counts dropped a lot at first, and they are still low, especially platelets, but are stable and not at a dangerous level. I gained some weight (about 20 pounds) which I haven't been able to lose, but other people have gained and then lost the weight. I get tired and have some aches and pains, which i would like to blame on the medicine, but it's probably just my age.....ha! We with CML are very blessed to live at this time. When I was diagnosed the life expectancy was 5 years and the standard treatment was bone marrow transplant, which many did not survive. There are many new drugs today, stronger than Gleevec and developments continue to occur for treatment. We're all hoping for a cure so that we can get off the medicine, but in the meantime, we are thankful for each wonderful day. God is good. Gay Bratton On Aug 22, 2009, at 11:36 PM, peggybieber wrote: > hello everyone, as i just stated i am new to mr. toads wild ride. my > 37 year old son who is d.d. and lives with me was just diagnosed > thursday. he is goint to start on gleevec as soon as the drug > company mails it to us.what can i expect? as a mother who just > happens to have been a nurse i see the world from both sides and it > scares the bejinkies for the tendereyed out there. how does one deal > with the day to day? when will i notice he is starting to be more > like himself and not so blah all of the time. how are the side- > effects? i know i am just blasting everyone with questions but you > are the source. family andpeople living with leukemia every day. > thank yoy so much for listing to my rantings . it is just wonderful > to know we are not alone in this journey back to life. thank you a > grateful mother > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 Hi Peggy: Sorry you had to join a website for Leukemia for your son, but it was the first step in the right direction. Like Zavie and others said, its not like it was years ago. You heard LEUKEMIA, and you just figured thats it!! I also was diagnosed many years ago. 1998 was my diagnosis, and was on all the old treatments. Then I was blessed that they found Gleevec. There are side effects as others mentioned, and without going into all of them just know that you can write to us and get answers to ease your mind. This wild ride has a lot of twists and turns in it, but you get through it as you can see by the survival of so many of us without a bone marrow transplant. They are getting closer to a cure, and I believe some will get to experience it. Just keep in touch, and you will get the help and comfort you need. Welcome to our group. Blessings Suzzie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2009 Report Share Posted August 26, 2009 Hi Peggy My name is Annie and my 26 year old son, has cml - he was dx'd in 2006 and is doing just great right now. It will take time, quite a bit of time, till you are more relaxed with everything going on. One of the ways I got there (wherever 'there' is) was to learn as much about cml as possible. I still get a bit 'frilly' when the pcr test results are due, but generally we have moved on with life much richer with friends than before. Please feel free to email me anytime if you would like to share or ask questions. I dont have all the answers, only those relevant to 's treatment and my feelings. My email is ibannie @ comcast.net. You can also read 's cml journey at http://livingwithcml.blogspot.com. And again, contact me anytime. I know its a scary place for you to be in right now. love and light Annie > > hello everyone, as i just stated i am new to mr. toads wild ride. my 37 year old son who is d.d. and lives with me was just diagnosed thursday. he is goint to start on gleevec as soon as the drug company mails it to us.what can i expect? as a mother who just happens to have been a nurse i see the world from both sides and it scares the bejinkies for the tendereyed out there. how does one deal with the day to day? when will i notice he is starting to be more like himself and not so blah all of the time. how are the side-effects? i know i am just blasting everyone with questions but you are the source. family andpeople living with leukemia every day. thank yoy so much for listing to my rantings . it is just wonderful to know we are not alone in this journey back to life. thank you a grateful mother > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 hi there, my name is jeanny and i have a 20 year old daughter natasha with cml, first i will say im french , so the mistake in here, not my fault lol she was diagnose with cml wen she was 18 , its all ready been 2 years, it goes so fast, but i was like you , asking all kind of question, i was so nervous, i cryed for the past 2 years, but like peggy is saying, I to can breath again, if you want to talk , please dont be shy, its jeanny-f@... , there is nothing you can say that will offend me, i know from deep down my heart that you need to talk and let go , From: ibannie@... Date: Wed, 26 Aug 2009 17:31:15 +0000 Subject: [ ] Re: new to this wild ride Hi Peggy My name is Annie and my 26 year old son, has cml - he was dx'd in 2006 and is doing just great right now. It will take time, quite a bit of time, till you are more relaxed with everything going on. One of the ways I got there (wherever 'there' is) was to learn as much about cml as possible. I still get a bit 'frilly' when the pcr test results are due, but generally we have moved on with life much richer with friends than before. Please feel free to email me anytime if you would like to share or ask questions. I dont have all the answers, only those relevant to 's treatment and my feelings. My email is ibannie @ comcast.net. You can also read 's cml journey at http://livingwithcml.blogspot.com. And again, contact me anytime. I know its a scary place for you to be in right now. love and light Annie > > hello everyone, as i just stated i am new to mr. toads wild ride. my 37 year old son who is d.d. and lives with me was just diagnosed thursday. he is goint to start on gleevec as soon as the drug company mails it to us.what can i expect? as a mother who just happens to have been a nurse i see the world from both sides and it scares the bejinkies for the tendereyed out there. how does one deal with the day to day? when will i notice he is starting to be more like himself and not so blah all of the time. how are the side-effects? i know i am just blasting everyone with questions but you are the source. family andpeople living with leukemia every day. thank yoy so much for listing to my rantings . it is just wonderful to know we are not alone in this journey back to life. thank you a grateful mother > _________________________________________________________________ Send and receive email from all of your webmail accounts. http://go.microsoft.com/?linkid=9671356 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 Thanks Annie, Everybody has been wonderful online sending info and goodthoughts to us. Pat started on his first dose of Gleevec today. Now it begins, has had any set backs? is 37 but will always be mentally and emotionally 14 y.o. he drives and goes to a day program. He is very trusting which has gotten him into some difficult situations so he now lives with me. His 24 y.o. sister does not get the gravity of the situation and is feeling left out. Sibling rivalry at its worst! Kids , her little boy is 15months old and he loves his uncle Pat, this is helping Pat right now as he is feeling depressed a normal reaction to the cml. Mom, I just have to keep chugging along. thanks again for letting me vent ,no one really understands how we truly feel unless they are on this ride. Peggy ________________________________ From: livingwithcml <ibannie@...> Sent: Wednesday, August 26, 2009 1:31:15 PM Subject: [ ] Re: new to this wild ride Hi Peggy My name is Annie and my 26 year old son, has cml - he was dx'd in 2006 and is doing just great right now. It will take time, quite a bit of time, till you are more relaxed with everything going on. One of the ways I got there (wherever 'there' is) was to learn as much about cml as possible. I still get a bit 'frilly' when the pcr test results are due, but generally we have moved on with life much richer with friends than before. Please feel free to email me anytime if you would like to share or ask questions. I dont have all the answers, only those relevant to 's treatment and my feelings. My email is ibannie @ comcast.net. You can also read 's cml journey at http://livingwithcm l.blogspot. com. And again, contact me anytime. I know its a scary place for you to be in right now. love and light Annie > > hello everyone, as i just stated i am new to mr. toads wild ride. my 37 year old son who is d.d. and lives with me was just diagnosed thursday. he is goint to start on gleevec as soon as the drug company mails it to us.what can i expect? as a mother who just happens to have been a nurse i see the world from both sides and it scares the bejinkies for the tendereyed out there. how does one deal with the day to day? when will i notice he is starting to be more like himself and not so blah all of the time. how are the side-effects? i know i am just blasting everyone with questions but you are the source. family andpeople living with leukemia every day. thank yoy so much for listing to my rantings . it is just wonderful to know we are not alone in this journey back to life. thank you a grateful mother > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2009 Report Share Posted August 29, 2009 Hi Peggy This is truly a very wonderful group of people on this board.... I am glad Pat has started on Gleevec now. has not had any setbacks, although Gleevec made him tired for the first two years. He has also started getting out in the sun a bit and this is doing him a lot of good. He has had a pretty smooth ride and the worst thing he says, was getting that pill stuck in his throat one day! The taste is not good, I gather. I am sure the Pat's sister will settle down with this soon, especially if Pat has a smooth road on Gleevec. I just know that little 15 month old is such a help right now..and a great comfort to Pat especially. It does get easier - well, it did for me. It took a while and the one thing that really helped tremendously was Lottie saying that 'worry is like a rocking chair - it goes nowhere!' - that got my behind out of my rocking chair and on with life. I am going to be out of town for about 6 weeks, so if I miss a message from you on this board, please contact me through my email - I will be only too happy to chat with you that way too. I am hoping that Gleevec works wonders for Pat, 'cause then it will work wonders for your peace of mind too..... love and light Annie > > Thanks Annie, > Everybody has been wonderful online sending info and goodthoughts to us. Pat started on his first dose of Gleevec today. Now it begins, has had any set backs? is 37 but will always be mentally and emotionally 14 y.o. he drives and goes to a day program. He is very trusting which has gotten him into some difficult situations so he now lives with me. His 24 y.o. sister does not get the gravity of the situation and is feeling left out. Sibling rivalry at its worst! Kids , her little boy is 15months old and he loves his uncle Pat, this is helping Pat right now as he is feeling depressed a normal reaction to the cml. Mom, I just have to keep chugging along. thanks again for letting me vent ,no one really understands how we truly feel unless they are on this ride. > > Peggy > > > > > ________________________________ > From: livingwithcml <ibannie@...> > > Sent: Wednesday, August 26, 2009 1:31:15 PM > Subject: [ ] Re: new to this wild ride > > > Hi Peggy > > My name is Annie and my 26 year old son, has cml - he was dx'd in 2006 and is doing just great right now. > > It will take time, quite a bit of time, till you are more relaxed with everything going on. One of the ways I got there (wherever 'there' is) was to learn as much about cml as possible. I still get a bit 'frilly' when the pcr test results are due, but generally we have moved on with life much richer with friends than before. > > Please feel free to email me anytime if you would like to share or ask questions. I dont have all the answers, only those relevant to 's treatment and my feelings. My email is ibannie @ comcast.net. You can also read 's cml journey at http://livingwithcm l.blogspot. com. > > And again, contact me anytime. I know its a scary place for you to be in right now. > > love and light > Annie > > > > > > hello everyone, as i just stated i am new to mr. toads wild ride. my 37 year old son who is d.d. and lives with me was just diagnosed thursday. he is goint to start on gleevec as soon as the drug company mails it to us.what can i expect? as a mother who just happens to have been a nurse i see the world from both sides and it scares the bejinkies for the tendereyed out there. how does one deal with the day to day? when will i notice he is starting to be more like himself and not so blah all of the time. how are the side-effects? i know i am just blasting everyone with questions but you are the source. family andpeople living with leukemia every day. thank yoy so much for listing to my rantings . it is just wonderful to know we are not alone in this journey back to life. thank you a grateful mother > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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