Guest guest Posted February 9, 2007 Report Share Posted February 9, 2007 Hi Holly, Sorry to hear of your latest challenge. There are a few of our members who are on Sprycel and who are doing very well. There is also another board that is dedicated to people taking Sprycel. You can find it here: http://www.newcmldrug.com/bms_discuss/default.asp Goodluck, Tracey > > Hi. I don't post often but I have a question. I had been in > remission for a couple years on Gleevec but yesterday I went for a bmb > and my cbc showed my platlets at over 2 million, so that shows me > loosing my hematologic response which makes me no longer eligible for > the trial I was on. My onc is switching me to sprycel, and I was > wondering is anyone is taking this and what kind of information you > might share? > Thanks, > Holly > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2007 Report Share Posted April 29, 2007 --- In , " carolyn_kuptz " <carolyn_kuptz@...> wrote: > > I was diagnosed with cml in ll-05. After 3 months on Gleevec I had > liver function failure due to Gleevec. After many stressful months of > waithing for the liver counts to come back within normal range > meanwhile the cml counts were soaring, the FDA approved sprycel and I > was put on the recommended dose of 70 mg twice a day. That proved way > to strong and again I had to have tranfussion and wait for count to > come back with normal range before they could restart Sprycel. Since > then I have been on only 20mg twice a day. My last bone marrow showed > remission with only .5 cancer cells in the marrow. Has anyone else > had experience with sprycel. I sometimes feel like I am a testing > ground since it is so new Dr don't know the long term results. > Carolyn. This is my first post but I read yours and felt inspired to tell you my story. I too have been diagnosed with CML, I have now had it for 7 years, I was diagnoses in April of 2000. I want you to know you aren't alone in the battle against this cancer. When I was diagnosed the oncologist that I was seeing placed me on a regiment of a chemo drug and interferon, I was on this for 6 months when the doctor was forced to stop because my liver was dangerously enlarging, not to mention I was constatntly sick. I then went another 6 months on absolutly nothing. my counts went through the roof, they then introduced Gleevec in our area, my doctor placed me on that with a dose of 400 mg to start. It seemed to be working, then about a year and a half later I had to increase it to 800 mg. This helped once again for about a year then suddenly they decided to add Hydrea to my Gleevec dosage. This was a big roller coaster ride, my counts kept going up slowly, my doctor didn't know what should be done next. I wasn't eligable for a bone marrow transplant, so I was more or less told I needed to live with my condition and accept what was eventually going to happen to me, Death. I didn't want to give up, I prayed for something to help. My doctor then heard of a trial they were doing at Mayo Clinic. She asked me if I was interested and I jumped at the opportunity. I was on this trial of AMN-107 for 8 days, I thought it was working until the 8th day, on that day I found out my platlets were in the millions and going up, I was immediatly taken off this and they told me to not to go back on my Gleevec anymore and increased my hydrea dosage. I went this on just this from March 2006 til June 2006 when my new occologist at the Mayo Clinic, told me of a new drug that was just approved by the FDA, Spycel. I started immediatly on the 70 mg dose twice a day. I had no side effects, no commplications, my count within two weeks were dropping and has continue to this day. On January 29th I had a bone marrow test and 2 weeks later I was called by my doctor who said the words I was told by everyone else that I would never hear, I was in Remission. I thank God for Sprycel. I know gleevec works for some and I'm glad they came out with it, but it just didn't work for me. I bless all the doctors, researchers, and clinical trial participants who helped develop both of these drugs for without them my family would be without a mother. I hope this helped you know you aren't alone and my prayers are with you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2007 Report Share Posted April 29, 2007 Hi , Thank you for posting and telling your story. It is a beautiful lesson that one should never give up, even if the doctor says it is time to prepare for the worst. And now ... O!!! YIPPEEE!!! Number 1058 in the Zero Club Zavie Zavie (age 68) 67 Shoreham Avenue Ottawa, Canada, 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 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem [ ] Re: sprycel --- In , " carolyn_kuptz " <carolyn_kuptz@...> wrote: > > I was diagnosed with cml in ll-05. After 3 months on Gleevec I had > liver function failure due to Gleevec. After many stressful months of > waithing for the liver counts to come back within normal range > meanwhile the cml counts were soaring, the FDA approved sprycel and I > was put on the recommended dose of 70 mg twice a day. That proved way > to strong and again I had to have tranfussion and wait for count to > come back with normal range before they could restart Sprycel. Since > then I have been on only 20mg twice a day. My last bone marrow showed > remission with only .5 cancer cells in the marrow. Has anyone else > had experience with sprycel. I sometimes feel like I am a testing > ground since it is so new Dr don't know the long term results. > Carolyn. This is my first post but I read yours and felt inspired to tell you my story. I too have been diagnosed with CML, I have now had it for 7 years, I was diagnoses in April of 2000. I want you to know you aren't alone in the battle against this cancer. When I was diagnosed the oncologist that I was seeing placed me on a regiment of a chemo drug and interferon, I was on this for 6 months when the doctor was forced to stop because my liver was dangerously enlarging, not to mention I was constatntly sick. I then went another 6 months on absolutly nothing. my counts went through the roof, they then introduced Gleevec in our area, my doctor placed me on that with a dose of 400 mg to start. It seemed to be working, then about a year and a half later I had to increase it to 800 mg. This helped once again for about a year then suddenly they decided to add Hydrea to my Gleevec dosage. This was a big roller coaster ride, my counts kept going up slowly, my doctor didn't know what should be done next. I wasn't eligable for a bone marrow transplant, so I was more or less told I needed to live with my condition and accept what was eventually going to happen to me, Death. I didn't want to give up, I prayed for something to help. My doctor then heard of a trial they were doing at Mayo Clinic. She asked me if I was interested and I jumped at the opportunity. I was on this trial of AMN-107 for 8 days, I thought it was working until the 8th day, on that day I found out my platlets were in the millions and going up, I was immediatly taken off this and they told me to not to go back on my Gleevec anymore and increased my hydrea dosage. I went this on just this from March 2006 til June 2006 when my new occologist at the Mayo Clinic, told me of a new drug that was just approved by the FDA, Spycel. I started immediatly on the 70 mg dose twice a day. I had no side effects, no commplications, my count within two weeks were dropping and has continue to this day. On January 29th I had a bone marrow test and 2 weeks later I was called by my doctor who said the words I was told by everyone else that I would never hear, I was in Remission. I thank God for Sprycel. I know gleevec works for some and I'm glad they came out with it, but it just didn't work for me. I bless all the doctors, researchers, and clinical trial participants who helped develop both of these drugs for without them my family would be without a mother. I hope this helped you know you aren't alone and my prayers are with you. Quote Link to comment Share on other sites More sharing options...
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