Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 Re: Third anniversary Congratulations. I was diagnosed 8 years ago the end of this month when I was having allergy testing because of swollen, puffy, watery eyes. To my surprise I was told that I would need to see an ONC and and a long story began. I am happy to say that the 5-10 life expectancy has been extended and now my ONC tells me I will probably die of something other than CML. While I understand the struggle with your husband's kidney it is amazing the adopted son was a match. My prayers are that you will see many more good things happen in your life. I had a sister that lived 17 years (to the aveage age of our family's life expetancy) after losing both kidneys and having a year of dialisis before a match was found. I wish you many more successful blood tests. H. dxd 2/2003 400mg Gleevec 3/2003 Undetectable 11/03 RT-PCR negative 11/04 QT-PCR .003 11/05 RBC 8. Gleevec Vacation 11/06-6/07 Iron infusion 11/06 Transfusions 12/06-5/07 QT-PCR .7 Gleevec 1/08 -5/08 Procrit 8/08-11/08 Gleevec Vacation 7/08-Pressent QT-PCR .03 4/09 QT-PCR .015 6/09 QT-PCR .021 9/09 QT-PCR .028 1/10 QT-PCR .01+ 4/10 QT-PCR .0468 10/10 Next QT-PCR Feb. 2011 > > It will be three years on Tuesday when I learned that I had CML, a cancer that I knew nothing about. I was fortunate as I had no symptoms and my CML was diagnosed when I was having final blood tests before undergoing surgery to donate a kidney to my husband who was in renal failure. I will never forget how I felt when I was told. We were meeting for the final time with the transplant surgeon and he came in and told my husband and me that there was a problem. I can remember thinking what more is wrong with Ray and then heard that I had 95,000 white blood cells. I didn't know what that meant and just told him to fix it so we could go on with the transplant. Instead I was refered to hemotologist/oncologist who was wonderful. > > Life has a way of working out. If I hadn't been donating a kidney, I would have been much sicker before I was diagnosed. Within 3 months, I was in molecular remission where I have remained. My husband began dialysis and 4 months later our 20 year old adopted son donated a kidney to his dad. Both are of them are doing fantastic. > > I have learned not to take life for granted. I have learned that I am lucky as I am able to continue to work as a CPA although there are challenges. I mainly suffer from fatigue and stomach issues. Tax season is tough as we are working 7 days a week, but I have learned to know my limitations. I don't think the people I work with understand that when I " hit my wall " , I have to quit and go home and go to bed. I do it anyway. My insurance company has had its moments of not understanding why I am taking a medication that costs so much and why I can't take something that is cheaper, but so far they have come through after some prodding. > > Throughout all of this, I have learned so much from this group. I appreciate all of the information. I am a lurker, but feel like I know so many of you. Thank you for letting me be part of the group and helping me deal with my CML. > > Jill > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 Hi Jill, that is an amazing story, and the fact that your adopted son was a match for your husband is a miracle in itself. The best of luck to all of you, Bobby On Mon, Feb 7, 2011 at 12:04 AM, <dickie_64012@...> wrote: > > > Congratulations. I was diagnosed 8 years ago the end of this month when I > was having allergy testing because of swollen, puffy, watery eyes. To my > surprise I was told that I would need to see an ONC and and a long story > began. Just happy to say that the 5-10 life expectancy has been extended and > now my ONC tells me I will probably die of something other than CML. While I > understand the struggle with your husband's kidney it is amazing the adopted > son was a match. My prayers are that you will see many more good things > happen in your life. I had a sister that lived 17 years after losing both > kidneys and having a year of dialisis before a match was found. > > I wish you many more successful blood tests. > > > > > > It will be three years on Tuesday when I learned that I had CML, a cancer > that I knew nothing about. I was fortunate as I had no symptoms and my CML > was diagnosed when I was having final blood tests before undergoing surgery > to donate a kidney to my husband who was in renal failure. I will never > forget how I felt when I was told. We were meeting for the final time with > the transplant surgeon and he came in and told my husband and me that there > was a problem. I can remember thinking what more is wrong with Ray and then > heard that I had 95,000 white blood cells. I didn't know what that meant and > just told him to fix it so we could go on with the transplant. Instead I was > refered to hemotologist/oncologist who was wonderful. > > > > Life has a way of working out. If I hadn't been donating a kidney, I > would have been much sicker before I was diagnosed. Within 3 months, I was > in molecular remission where I have remained. My husband began dialysis and > 4 months later our 20 year old adopted son donated a kidney to his dad. Both > are of them are doing fantastic. > > > > I have learned not to take life for granted. I have learned that I am > lucky as I am able to continue to work as a CPA although there are > challenges. I mainly suffer from fatigue and stomach issues. Tax season is > tough as we are working 7 days a week, but I have learned to know my > limitations. I don't think the people I work with understand that when I > " hit my wall " , I have to quit and go home and go to bed. I do it anyway. My > insurance company has had its moments of not understanding why I am taking a > medication that costs so much and why I can't take something that is > cheaper, but so far they have come through after some prodding. > > > > Throughout all of this, I have learned so much from this group. I > appreciate all of the information. I am a lurker, but feel like I know so > many of you. Thank you for letting me be part of the group and helping me > deal with my CML. > > > > Jill > > > > > -- a Doyle/dob 1929 DX /CML/1995/Interferon/hydrea 2/00 - Gleevec Trial, OHSU, Dr. Druker 6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker 6/03 - Gleeved/Zarnestra Trial, OHSU, " " " " 7/04 - Sprycel Trial, MDACC, Dr. Talpaz 3/05 - CCR 12/07 - Ended trial due to Pleural Effusion 4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz 4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz #840 Zavie's Zero Club #840 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Jill, what a tremendously inspiring story. You truly know how to take life's " lemons " and make " lemonade " :-) Leah > > > > > > It will be three years on Tuesday when I learned that I had CML, a cancer > > that I knew nothing about. I was fortunate as I had no symptoms and my CML > > was diagnosed when I was having final blood tests before undergoing surgery > > to donate a kidney to my husband who was in renal failure. I will never > > forget how I felt when I was told. We were meeting for the final time with > > the transplant surgeon and he came in and told my husband and me that there > > was a problem. I can remember thinking what more is wrong with Ray and then > > heard that I had 95,000 white blood cells. I didn't know what that meant and > > just told him to fix it so we could go on with the transplant. Instead I was > > refered to hemotologist/oncologist who was wonderful. > > > > > > Life has a way of working out. If I hadn't been donating a kidney, I > > would have been much sicker before I was diagnosed. Within 3 months, I was > > in molecular remission where I have remained. My husband began dialysis and > > 4 months later our 20 year old adopted son donated a kidney to his dad. Both > > are of them are doing fantastic. > > > > > > I have learned not to take life for granted. I have learned that I am > > lucky as I am able to continue to work as a CPA although there are > > challenges. I mainly suffer from fatigue and stomach issues. Tax season is > > tough as we are working 7 days a week, but I have learned to know my > > limitations. I don't think the people I work with understand that when I > > " hit my wall " , I have to quit and go home and go to bed. I do it anyway. My > > insurance company has had its moments of not understanding why I am taking a > > medication that costs so much and why I can't take something that is > > cheaper, but so far they have come through after some prodding. > > > > > > Throughout all of this, I have learned so much from this group. I > > appreciate all of the information. I am a lurker, but feel like I know so > > many of you. Thank you for letting me be part of the group and helping me > > deal with my CML. > > > > > > Jill > > > > > > > > > > > > > -- > a Doyle/dob 1929 > DX /CML/1995/Interferon/hydrea > 2/00 - Gleevec Trial, OHSU, Dr. Druker > 6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker > 6/03 - Gleeved/Zarnestra Trial, OHSU, " " " " > 7/04 - Sprycel Trial, MDACC, Dr. Talpaz > 3/05 - CCR > 12/07 - Ended trial due to Pleural Effusion > 4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz > 4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz > #840 Zavie's Zero Club #840 > > > Quote Link to comment Share on other sites More sharing options...
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