Hi Jeanie, I started on 400 mg. then I received the Gleevec rash and back then I was one of 200 people in a study in the United States and they had no idea was caused it. So they dropped me down to 300 mg and that's where Iv'e been all these years. It's still working as far as I know, but I'll find out on May 7th if everything is still working for me. It's always something to worry about. She must feel that it's O. K. because now I only have to see her once a year so I guess I've been lucky. Of course I hope it stays that way, time will tell. I feel so sorry for those that have to take more because of the side effects, I don't think I could handle more then that. I feel that I won the lottery when I was put on (STI571) Gleevec. Better to have the Gleevec then the money. Just have to just hang in their and hope for the best. greenie P.S. I it's 37 deg. in Northwest Indiana and 79 deg. here in Fort Myers, that's a no brainer. I've lived here for over three years and I have only met 9 people that were born here in Florida. I guess I'm a transplant from Indiana. In a message dated 3/15/2014 4:59:34 P.M. Eastern Daylight Time, [email protected] writes:
What an interesting life you have lived Greenie. I'm a FL Cracker so I don't know about living in that cold weather. I think everyone is used to what they do, I know my hubby's family came from ND so that is cold. I've been everywhere but always love coming back to FL. Yes, we have to take our pills and every time I've tried to cut down my platelets go up so go figure. How much Gleevec do you take? When I relapsed from Tasigna my onc at the time started giving me 6 pills, which was a lot of Gleevec along with other drugs, I think Hydra and others. I had already relapsed on Gleevec and it just didn't work anymore. I remember he had me order more Gleevec and it was just a waste of time and money. Sprycel is the one that worked for me at least so far. We are all fighters, and we will fight on. Blessings, Jeanie<3 In a message dated 3/14/2014 12:04:01 P.M. Eastern Daylight Time, [email protected] writes: Hi Jeanie, I was born in Chicago on the South side. My grandmother and aunt used to live in Jackson Park. We would take the South Shore and go and play hide and go seek in the science and industry then take the south shore and play in the field museum. We lived in Hobart, IN. so when would go for blood work it would only take me about 35 to 40 to get down town Chicago. Plus they would have the results in 15 to 20 min. Not like Lee Memorial Health care. And Lee is not cheap. My son Derek live on the North side of Chicago, he love's it their. Me I can take it or leave it. To many people, to many cars, no place to park, etc. But to each his own. I like Fort Myers BUT, these people DO NOT KNOW HOW TO DRIVE. Travel at your own risk. Been hit two time in last 6 months and not my fault. But then they have no fault insurance and that's no help. But you can't beat the weather, glade I don't live up North, I fell sorry for those that live up their. Anyway, have a nice day and we all have to keep taking our pills. greenie In a message dated 3/14/2014 11:11:11 A.M. Eastern Daylight Time, [email protected] writes: Hi Greenie and thanks for the update. My counts were so high in the beginning of my dx that the onc was taking them every few days. He had a blood draw in his office and it was so easy. Then he did away with the blood draw and it got a lot harder. I had to go to a blood office and have them draw the blood and send the report to the doctor. It is now much easier, I go to Moffitt cancer center and you go to the blood draw center and an hour or so later you see your onc and he has the blood results. He will give me a copy if I ask. And I'm always worried about them in between. If I get to feeling a little bad, I wonder if CLM has reared its ugly head and if my counts are up again. My PCD will take my blood and get the results overnight; he is close to me so this is a good thing for me. If I get too worried I go and have him take them for me. Maybe you could find a local doctor that would do that for you if you get worried; Just a thought. You have done so good on Gleevec, it's just a miracle. Keep on keeping on and good luck. Have a wonderful trip; I love Chicago. I've only been once but I really had a good time there. We Stayed right downtown in one of the large hotels there; went through the lock and toured the lake, had a jazz breakfast show, and just had a good time. It was windy when I was there. Jeanie<3 In a message dated 3/13/2014 8:40:52 P.M. Eastern Daylight Time, [email protected] writes: Hi Jeanie, I always worry about my tests, I always try to get them on a Wednesday that's how I first started on a Wednesday don't want to change that. Now it's only once a year I will be flying into Chicago May 7th, my son will pick Grace and myself up and take us downtown Chicago for my blood work, see the Doctor and pick up my Med's. We are going to spend 4 days in the area have to go see Grace's boys and grand kids to, etc. Will fly back on the 12th. My Doctor told me that if it makes me fell better I can get my blood work 6 month later here in Fort Myers and send the results back to her witch I plan to do. I just can't go a full year without knowing what's going on with my counts. I do worry a lot, just can't help myself, been that way all my life. It's a hard habit to stop. I hope the sun come's up tomorrow. See what I mean. All of us CML and care takers due take care of yourself's. greenie In a message dated 3/13/2014 5:08:21 P.M. Eastern Daylight Time, [email protected] writes: So happy that Gleevec still works for you Greenie. Yes, I think we all are in awe of how the years have passed and where we are now. I celebrated my 10th year the first of the year. Dx in Jan started Gleevec in Feb. Then on Tasi and now on Sprycel. Hanging in there still, and as Millie says, one day at a time. Well, I do worry about what my counts will be when I get my next test. I'm just a worrier so that's just me. Blessings, Jeanie<3 In a message dated 3/12/2014 8:03:37 A.M. Eastern Daylight Time, [email protected] writes: Hi Millie, Me to 16 years, been on Gleevec 14 years 3 months. That was a fast 16 years. I have to pinch myself to my sure I'm still here. greenie In a message dated 3/12/2014 12:46:55 A.M. Eastern Daylight Time, [email protected] writes: I'm going on 16 years with CML. I think it is anyway. I have never kept track of dates and numbers as I leave that up to my Oncologist and he does a great job :>). I am just glad to be here with all of you and be able to share our experiences. It does help to know how everyone else is dealing with their CML. We have all had such different results. Tasigna was the only thing that put me into remission, and since being diagnosed with Liver disease my Tasigna was cut off completely for over a month and then I was put on a half dose which has kept me in remission. I don't think about what the numbers are going to be next as I do practice what I preach, and live one day at a time...doing the best I'm able to do. I think if I would dwell on these things to much I'd drive myself crazy, and so I don't. I try to live my life the best that I can and doing things that help me deal with my pain from Arthritis, Polymyalgia, and compressed disks that cause the pain. My medical issues are many and to sit and worry all of the time wouldn't be a good thing and certainly wouldn't help. I'm happy that you are still doing so well, and hope that it will continue, so keep up your messages and let us know how you're doing. Hugs, Millie ----- Original Message ----- From: Richard H <[email protected]> To: [email protected] Sent: Wed, 12 Mar 2014 00:13:18 -0400 (EDT) Subject: [CMLHope] Aniversery 13 I have passed my 13th year with CML. Monday I will meet with my ONC for the results on my blood tests. My CBC was eactly where it should be so I am praying for good results. About a month ago I noticed a spring in my steps to coffee club and increased energy. I will report the findings after I get them. I am praying for all, and so glad Marty is feeling better and able to join on line. Richard H. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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