Guest guest Posted February 22, 2007 Report Share Posted February 22, 2007 True On That Gail. Great Outlook Too. d ________________________________________________________________________________\ ____ Music Unlimited Access over 1 million songs. http://music./unlimited Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2008 Report Share Posted July 12, 2008 HOW TRUE, WHEN I WAS IN THE GLEEVEC TRIAL, I WAS OUT IN PORTLAND OREGON, ALL ALONE, DIDN'T KNOW A HOOT ABOUT TRIALS AND DIDN'T KNOW THERE WAS EVEN A SITE AVAILABLE THAT COULD HAVE HELPED ME., AND EVEN BEFORE THAT, FOR 5 YEARS I LIVED WITH CML AND LIVED TOTALLY IN THE DARK. I BELIEVED EVERY THING MY DR TOLD ME, NEVER QUESTIONED A THING, AND NEVER EVEN U;NDERSTOOD THE LABS! HOW DUMB I WAS, AND HOW MUCH BETTER LIFE IS WHEN YOU HAVE A BUNCH OF BUDDIES TO COMPARE NOTES WITH, AND TO HELP YOU UNDERSTAND EVERYTHING. A BIG THANKS TO EVERY ONE WHO PITCHES IN AND TELLS THEIR HISTORIES, TO THE NEWBIES, AND TO US OLDIES TOO. I HAVE A NEW LAP TOP AND AM HAVING QUITE A TIME TRYING TO ADJUST TO THE NEW KEYBOARD, EXCUSE THE ERERORS!! BOBBY taina2044@... wrote: that is soooooo true the succesful cml'er that are living great lives also give us great hope, I know that everone is different but share your strategies and life styles perhaps that will help us newbies as well i've been on the list not yet a year, but i don't know much about this so i'm learning you guys have so much more info than most of our onc/hemo give us aliza yaffa **************Get the scoop on last night's hottest shows and the live music scene in your area - Check out TourTracker.com! (http://www.tourtracker.com?NCID=aolmus00050000000112) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Hi All, I have not posted in a long long time, but still read occasionally a saw these posts about sharing the success stories so I thought I would give an update. I was dx 5 years ago next week (8/1/03)and think it was relatively early as my counts were about normal but not extremely high. I have been PCRU for 4-1/2 years now and have been relatively lucky since I really didn't experience much for side effects (a little nausea in the beginning and some minor diarrhea, and my HGB was low for a while but has been in the normal range for the last year). I was started on 600mg but was able to reduce to 400mg in March. I talked to my Dr. after listening to the conference call and he agreed we could reduce. I basically lead a normal life and don't think much about having CML except for that I have to take a pill every day. I am very active (hiking, biking, skiing) and get exercise 5-6 times a week, I work full time and am the chair of a local volunteer outdoor activities club. Most people are really surprised to find out I have cancer since I seem so healthy to them. In honor of being a 5 year survivor next weekend (Aug 2-3rd) I am riding the Pan Mass Challenge to raise funds for research and treatment at Dana Farber. Along with about 5000 other people I will ride my bicycle 192 miles across Massachusetts in 2-days. As part of this event I was one of the 40 riders who are also cancer survivors that was selected to participate in the pre-game ceremonies during the Red Sox Game on July 12th. We were selected to ride our bikes in Fenway Park and were on the field for the national anthem. It was really cool. They didn¡¦t get me in these shots but you can see the event on this news click. The cyclists are about a minute and a half in. http://multimedia.boston.com/pub/m/20398217/fenway_hosts_night_for_pm c.htm?pageid=25093 The following week I will be heading out to California for vacation for some backpacking in Yosemite and to climb Mt. Whitney. Since dx I have also climbed Kilimanjaro and Rainier. My doctor told me after I got back from Kilimanjaro that he never thought I was going to be able to go that high since my HGB was borderline low at that time (11.4-7) but I showed him :-) I know it is not possible for everyone but the key for me has been staying active. I feel worse when I don¡¦t exercise. I was in good condition when I was dx and actually 2 weeks afterwards did a 2 week hiking trip in Switzerland. Did you ever try to find someone to do blood work for you in the middle of the Swiss Countryside, challenging I can tell you, but I promised my doctor. Zavie et al, Hope you are all doing well. Sharon dx 8/1/03 ccr 11/03 pcru 2/04 and holding age: 42 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Wonderful post, good luck on the ride. I cycled 166 miles in one event last year and hope to climb Half Dome early next year. You will remain an inspiration Matt Dx January 2005 Tasigna since November 2007 Father of Three Captain of the Florida CML Army (honorary title) [ ] Re: so true Hi All, I have not posted in a long long time, but still read occasionally a saw these posts about sharing the success stories so I thought I would give an update. I was dx 5 years ago next week (8/1/03)and think it was relatively early as my counts were about normal but not extremely high. I have been PCRU for 4-1/2 years now and have been relatively lucky since I really didn't experience much for side effects (a little nausea in the beginning and some minor diarrhea, and my HGB was low for a while but has been in the normal range for the last year). I was started on 600mg but was able to reduce to 400mg in March. I talked to my Dr. after listening to the conference call and he agreed we could reduce. I basically lead a normal life and don't think much about having CML except for that I have to take a pill every day. I am very active (hiking, biking, skiing) and get exercise 5-6 times a week, I work full time and am the chair of a local volunteer outdoor activities club. Most people are real ly surprised to find out I have cancer since I seem so healthy to them. In honor of being a 5 year survivor next weekend (Aug 2-3rd) I am riding the Pan Mass Challenge to raise funds for research and treatment at Dana Farber. Along with about 5000 other people I will ride my bicycle 192 miles across Massachusetts in 2-days. As part of this event I was one of the 40 riders who are also cancer survivors that was selected to participate in the pre-game ceremonies during the Red Sox Game on July 12th. We were selected to ride our bikes in Fenway Park and were on the field for the national anthem. It was really cool. They didn¡¦t get me in these shots but you can see the event on this news click. The cyclists are about a minute and a half in. http://multimedia.boston.com/pub/m/20398217/fenway_hosts_night_for_pm c.htm?pageid=25093 The following week I will be heading out to California for vacation for some backpacking in Yosemite and to climb Mt. Whitney. Since dx I have also climbed Kilimanjaro and Rainier. My doctor told me after I got back from Kilimanjaro that he never thought I was going to be able to go that high since my HGB was borderline low at that time (11.4-7) but I showed him :-) I know it is not possible for everyone but the key for me has been staying active. I feel worse when I don¡¦t exercise. I was in good condition when I was dx and actually 2 weeks afterwards did a 2 week hiking trip in Switzerland .. Did you ever try to find someone to do blood work for you in the middle of the Swiss Countryside, challenging I can tell you, but I promised my doctor. Zavie et al, Hope you are all doing well. Sharon dx 8/1/03 ccr 11/03 pcru 2/04 and holding age: 42 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Hi Sharon, How wonderful to see your post. I've thought of you from time to time and hoped you were doing well. And apparently you are doing more than just doing well. Fantastic! All is going well for me, too. Of course, just reading about all your mountain climbing has me wanting a nap. But seriously, I'm doing well -- and I agree than exercise (any type & on any scale) does help. blessings, Kathy dx 5/03 > > Hi All, > > I have not posted in a long long time, but still read occasionally a > saw these posts about sharing the success stories so I thought I > would give an update. > > I was dx 5 years ago next week (8/1/03)and think it was relatively > early as my counts were about normal but not extremely high. I have > been PCRU for 4-1/2 years now and have been relatively lucky since I > really didn't experience much for side effects (a little nausea in > the beginning and some minor diarrhea, and my HGB was low for a > while but has been in the normal range for the last year). > > I was started on 600mg but was able to reduce to 400mg in March. I > talked to my Dr. after listening to the conference call and he > agreed we could reduce. > > I basically lead a normal life and don't think much about having CML > except for that I have to take a pill every day. I am very active > (hiking, biking, skiing) and get exercise 5-6 times a week, I work > full time and am the chair of a local volunteer outdoor activities > club. Most people are really surprised to find out I have cancer > since I seem so healthy to them. > > In honor of being a 5 year survivor next weekend (Aug 2-3rd) I am > riding the Pan Mass Challenge to raise funds for research and > treatment at Dana Farber. Along with about 5000 other people I will > ride my bicycle 192 miles across Massachusetts in 2-days. > As part of this event I was one of the 40 riders who are also cancer > survivors that was selected to participate in the pre-game > ceremonies during the Red Sox Game on July 12th. We were selected to > ride our bikes in Fenway Park and were on the field for the national > anthem. It was really cool. They didn¡¦t get me in these shots but > you can see the event on this news click. The cyclists are about a > minute and a half in. > > http://multimedia.boston.com/pub/m/20398217/fenway_hosts_night_for_pm > c.htm?pageid=25093 > > The following week I will be heading out to California for vacation > for some backpacking in Yosemite and to climb Mt. Whitney. Since dx > I have also climbed Kilimanjaro and Rainier. My doctor told me > after I got back from Kilimanjaro that he never thought I was going > to be able to go that high since my HGB was borderline low at that > time (11.4-7) but I showed him :-) > > I know it is not possible for everyone but the key for me has been > staying active. I feel worse when I don¡¦t exercise. I was in good > condition when I was dx and actually 2 weeks afterwards did a 2 week > hiking trip in Switzerland. Did you ever try to find someone to do > blood work for you in the middle of the Swiss Countryside, > challenging I can tell you, but I promised my doctor. > > Zavie et al, Hope you are all doing well. > > Sharon > dx 8/1/03 > ccr 11/03 > pcru 2/04 and holding > age: 42 > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.