Guest guest Posted May 3, 2008 Report Share Posted May 3, 2008 Dear a, Thanks for the heads up on he potassium issue. I hope you are doing well, this is not the first time that you have reached out to me with wonderful information. Love, > > > > Dear friends, > > Hello everyone. My name is and I am 31 years old and > have > > two sons, a 2 year old and a 4 year old. I was diagnosed on July, > 2007 > > and have been on 400mg of Gleevec since that time. I am treated at > NY > > Hospital by Dr. Schuster. I have posted on the Asian support group > so > > some of you already know me. Thank you for welcoming me into this > > group and I hope to get to know you guys and be part of your web of > > support. I have been suffering from edema of the lower legs, > ankles, > > and feet. > > > > I was > > wondering if some of you who have experienced these side effects > could > > tell me how you were treating this and if it > > went away or not. The doctor gave me Lasix to take as needed and I > > took a pill last night before I went to bed. I don't think it helped > > much aside from making me get up all night to urinate. Also, I had > bad > > cramps in my thigh in the morning and had to drink some Gatorade to > > replenish electrolytes. I'm not sure I want to keep taking the > > diuretics. Maybe I am not giving them enough time to work... I would > > appreciate some feedback on this from anyone who has had edema in > their > > lower legs. I see a lot of postings about the edema around the eyes > > but not that much about it in the legs. I hope everyone is feeling > > well and staying healthy. > > > > Thank you, > > > > NYC > > > > > > > > > a (Bobby) Doyle > Brecksville, Ohio, USA > DX 05/1995 > 02/2000 - Gleevec Trial/OHSU > 06/2002 - Gleevec/Trisenox Trial/OHSU > 06/2003 - Gleevec/Zarnestra Trial/OHSU > 04/2004 - Sprycel Trial/MDACC, CCR in 10 months > #840 - Zavie's Zero Club > 09/2006 - out of CCR > 04/29/08 - XL228 Trial/ U.of Michigan > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2008 Report Share Posted May 3, 2008 Hi , always glad to help. In 8 years I have been on Gleevec, Arsenic, Zarnestra, Sprycel and now XL228, so anything I can help out with, it's a pleasure. And , by the way, did I thank you for posting the information on Lottie and Jimmy on the Asian site? That was very nice of you, thanks a million, when I called Lottie that night, I read her your email. Blessings, Bobby <icynena@...> wrote: Dear a, Thanks for the heads up on he potassium issue. I hope you are doing well, this is not the first time that you have reached out to me with wonderful information. Love, > > > > Dear friends, > > Hello everyone. My name is and I am 31 years old and > have > > two sons, a 2 year old and a 4 year old. I was diagnosed on July, > 2007 > > and have been on 400mg of Gleevec since that time. I am treated at > NY > > Hospital by Dr. Schuster. I have posted on the Asian support group > so > > some of you already know me. Thank you for welcoming me into this > > group and I hope to get to know you guys and be part of your web of > > support. I have been suffering from edema of the lower legs, > ankles, > > and feet. > > > > I was > > wondering if some of you who have experienced these side effects > could > > tell me how you were treating this and if it > > went away or not. The doctor gave me Lasix to take as needed and I > > took a pill last night before I went to bed. I don't think it helped > > much aside from making me get up all night to urinate. Also, I had > bad > > cramps in my thigh in the morning and had to drink some Gatorade to > > replenish electrolytes. I'm not sure I want to keep taking the > > diuretics. Maybe I am not giving them enough time to work... I would > > appreciate some feedback on this from anyone who has had edema in > their > > lower legs. I see a lot of postings about the edema around the eyes > > but not that much about it in the legs. I hope everyone is feeling > > well and staying healthy. > > > > Thank you, > > > > NYC > > > > > > > > > a (Bobby) Doyle > Brecksville, Ohio, USA > DX 05/1995 > 02/2000 - Gleevec Trial/OHSU > 06/2002 - Gleevec/Trisenox Trial/OHSU > 06/2003 - Gleevec/Zarnestra Trial/OHSU > 04/2004 - Sprycel Trial/MDACC, CCR in 10 months > #840 - Zavie's Zero Club > 09/2006 - out of CCR > 04/29/08 - XL228 Trial/ U.of Michigan > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2008 Report Share Posted May 3, 2008 Dear a, It was my pleasure. Lottie is a lovely human being and she has been wonderful to me, emailing me privately throughout this past year to inquire about how I was doing physically and mentally since diagnosis. I know a lot of people appreciate her as much as I do so I figured I would just spread the word. Love, > > > > > > Dear friends, > > > Hello everyone. My name is and I am 31 years old and > > have > > > two sons, a 2 year old and a 4 year old. I was diagnosed on July, > > 2007 > > > and have been on 400mg of Gleevec since that time. I am treated > at > > NY > > > Hospital by Dr. Schuster. I have posted on the Asian support > group > > so > > > some of you already know me. Thank you for welcoming me into this > > > group and I hope to get to know you guys and be part of your web > of > > > support. I have been suffering from edema of the lower legs, > > ankles, > > > and feet. > > > > > > I was > > > wondering if some of you who have experienced these side effects > > could > > > tell me how you were treating this and if it > > > went away or not. The doctor gave me Lasix to take as needed and I > > > took a pill last night before I went to bed. I don't think it > helped > > > much aside from making me get up all night to urinate. Also, I > had > > bad > > > cramps in my thigh in the morning and had to drink some Gatorade > to > > > replenish electrolytes. I'm not sure I want to keep taking the > > > diuretics. Maybe I am not giving them enough time to work... I > would > > > appreciate some feedback on this from anyone who has had edema in > > their > > > lower legs. I see a lot of postings about the edema around the > eyes > > > but not that much about it in the legs. I hope everyone is feeling > > > well and staying healthy. > > > > > > Thank you, > > > > > > NYC > > > > > > > > > > > > > > > > > a (Bobby) Doyle > > Brecksville, Ohio, USA > > DX 05/1995 > > 02/2000 - Gleevec Trial/OHSU > > 06/2002 - Gleevec/Trisenox Trial/OHSU > > 06/2003 - Gleevec/Zarnestra Trial/OHSU > > 04/2004 - Sprycel Trial/MDACC, CCR in 10 months > > #840 - Zavie's Zero Club > > 09/2006 - out of CCR > > 04/29/08 - XL228 Trial/ U.of Michigan > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Dear Bobby, Boy I hope Lottie doesn't see this message from . Her head will be bigger than a basketball!!!!!!! Bob , Granger, Indiana > > Dear a, > It was my pleasure. Lottie is a lovely human being and she has > been wonderful to me, emailing me privately throughout this past year > to inquire about how I was doing physically and mentally since > diagnosis. I know a lot of people appreciate her as much as I do so > I figured I would just spread the word. > > Love, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 That's OK Bob, she could probably use a good blast to her ego right now...but if I know Jimmy he is already making her laugh, him running down the hall with his hospital gown flapping in the breeze! Bobby <bob-stewart@...> wrote: Dear Bobby, Boy I hope Lottie doesn't see this message from . Her head will be bigger than a basketball!!!!!!! Bob , Granger, Indiana > > Dear a, > It was my pleasure. Lottie is a lovely human being and she has > been wonderful to me, emailing me privately throughout this past year > to inquire about how I was doing physically and mentally since > diagnosis. I know a lot of people appreciate her as much as I do so > I figured I would just spread the word. > > Love, > a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan Quote Link to comment Share on other sites More sharing options...
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