Guest guest Posted August 6, 2008 Report Posted August 6, 2008 Hi , I was diagnosed in September, 2006 and I am also on Gleevec, 600 mg/day. My best advice is to hang in there, and use this group for support and friendship and to be inspired. After much thought, I have come to the conclusion that this disease is not an awful one, or at least not as awful as it could be. It is a disease which makes you grow in lots of ways--to appreciate life, to tolerate discomfort without complaining (too much!), and to develop humility and a sense of humor about things you never imagined you could laugh at! I also have other diseases, diabetes, hypertension, hypercholesterolemia, and who knows what else, but those fade into the background in comparison with CML. I don't know why that is. It is weird, I was still adjusting to the fact that I had developed diabetes when I was diagnosed with CML. It all happened just after I turned 50. I am 53 now, and in the last three years, my health really took a few big hits! Anyway, I have two little boys 10 and 13 and two girls, 23 and 29, to live for and I am not planning to leave anytime soon. The Gleevec works great and the side-effects so far have been mostly tolerable, although I didn't work for a year because I was so tired and sick feeling. I am back to work full-time and being a mom when I am not at my paying job, so I haven't let it get me down. You hang in their girl, and let us know when you hit a snag and we'll all pull together to get you through it. Hugs for Good Health, Vicki > > Hi everyone. My name is , 44 y/o female from Ohio. I was > diagnosed with CML in December 2007. I am taking Gleevec and was > wondering if anyone else is. I have several other health issues, but > this seems the most serious. Any tips or advice will be greatly > appreciated. > Thx in advance! > > Quote
Guest guest Posted August 6, 2008 Report Posted August 6, 2008 Hi I was dx Dec 23 05 Taking 400 up till 4 months ago now 600 hoping to get to zero then can back off. My onc wanted to go to 800 I said what is the hurry,he read that one should be ooo.ooo in 24 months,you will find this does not happen. Lot of good people on this site. [ ] CML Gleevec Hi everyone. My name is , 44 y/o female from Ohio. I was diagnosed with CML in December 2007. I am taking Gleevec and was wondering if anyone else is. I have several other health issues, but this seems the most serious. Any tips or advice will be greatly appreciated. Thx in advance! Quote
Guest guest Posted August 6, 2008 Report Posted August 6, 2008 Hi . I'm 36 from Michigan. I was dx Sept 2007 and am on Gleevec 400 mg... but doing pretty well. Tammy Zero Club #1207 _____ From: [mailto: ] On Behalf Of louismiss Sent: Tuesday, August 05, 2008 9:52 PM Subject: [ ] CML Gleevec Hi everyone. My name is , 44 y/o female from Ohio. I was diagnosed with CML in December 2007. I am taking Gleevec and was wondering if anyone else is. I have several other health issues, but this seems the most serious. Any tips or advice will be greatly appreciated. Thx in advance! Quote
Guest guest Posted August 6, 2008 Report Posted August 6, 2008 Hi , Welcome to the group that nobody really wants to be a member of. There are may people on this list who have a wealth of experience and knowledge when it comes to CML and how it should be treated. The best advice that that I can offer you is to make sure that you go to a doctor who is very experienced with treating CML. Also, make sure that you get a copy of every test they do. After a while you will become expert in following your progress. Zavie Zavie (age 70) 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 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of louismiss Sent: August 5, 2008 9:52 PM Subject: [ ] CML Gleevec Hi everyone. My name is , 44 y/o female from Ohio. I was diagnosed with CML in December 2007. I am taking Gleevec and was wondering if anyone else is. I have several other health issues, but this seems the most serious. Any tips or advice will be greatly appreciated. Thx in advance! Quote
Guest guest Posted August 6, 2008 Report Posted August 6, 2008 Hi , I live in Brecksville OH, where do you live? I'm one of the old timers, have ;had cml for 13 years and am 78. Welcome aboard! Bobby 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 06/02/08 - CCR ( in 4 weeks) From: louismiss <louismiss@...> Subject: [ ] CML Gleevec Date: Tuesday, August 5, 2008, 9:52 PM Hi everyone. My name is , 44 y/o female from Ohio. I was diagnosed with CML in December 2007. I am taking Gleevec and was wondering if anyone else is. I have several other health issues, but this seems the most serious. Any tips or advice will be greatly appreciated. Thx in advance! Quote
Guest guest Posted August 6, 2008 Report Posted August 6, 2008 Dear , Welcome to the group. I am a 49 year old female that was diagnosed with CML in February 2008 when doing presurgery testing to donate a kidney to my husband. Needless to say, I could not donate a kidney to my husband, but I was lucky to catch the disease so early as I had no symptons. I am on 400 mg of gleevec and am #2006 in the zero club. I reached remission in May. I have some side effects from the gleevec, but overall am very, very lucky. This group is great and very supportive. I didn't even know that CML existed before I was dianosed Jill in Illinois > > Hi everyone. My name is , 44 y/o female from Ohio. I was > diagnosed with CML in December 2007. I am taking Gleevec and was > wondering if anyone else is. I have several other health issues, but > this seems the most serious. Any tips or advice will be greatly > appreciated. > Thx in advance! > > Quote
Guest guest Posted August 7, 2008 Report Posted August 7, 2008 Well welcome to the group, do not feel alone about side effects Jill, I have them too, I have been lucky and it has not affected my hair(yeah I still have long hair at 41 lol) But I still have fatigue,bone pain, and it is very hard for me to eat. But Gleevec is keeping me alive and the side effects are managed so I cannot complain. Very glad your in remission. Terry dxed April of 04 41 years old On Wed, Aug 6, 2008 at 10:20 AM, jillannt <talbott82@...> wrote: > > Dear , > > Welcome to the group. I am a 49 year old female that was diagnosed > with CML in February 2008 when doing presurgery testing to donate a > kidney to my husband. Needless to say, I could not donate a kidney to > my husband, but I was lucky to catch the disease so early as I had no > symptons. I am on 400 mg of gleevec and am #2006 in the zero club. I > reached remission in May. I have some side effects from the gleevec, > but overall am very, very lucky. This group is great and very > supportive. I didn't even know that CML existed before I was dianosed > > Jill in Illinois > > > > > > Hi everyone. My name is , 44 y/o female from Ohio. I was > > diagnosed with CML in December 2007. I am taking Gleevec and was > > wondering if anyone else is. I have several other health issues, but > > this seems the most serious. Any tips or advice will be greatly > > appreciated. > > Thx in advance! > > > > > > > Quote
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