Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Thanks for sharing, . Wow, you have had quite a journey. Taking Sprycell, how do you feel compared to Gleevec? I realize that might not be a fair question, post BMT, but am curious of you notice any difference. Regards, Chris **************One site keeps you connected to all your email: AOL Mail, Gmail, and Mail. Try it now. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000025) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Sorry to hear about your overflowing plate and lost ofeffectiveness with Gleevec. I was dx in May 2007 begain 400mg Gleevec swithched to 600mg in May of 2008 Towards the end of summer of 08 it was decided to switch to Spryceol. While I was taking a two week drug break, I had a bmb that showed I was in blast crisis, 89% blasts. I preceded with the sprycel and began seeing Dr. Talpaz at the University of Michigan. It was decided at my first visit at the UofM that I was a candidate for a BMT. Sprycel lowered my blasts to 21%. On December 23rd I received my BMT. Being only day +5, I am very happpy with how everything is progressing. I am optimistic for engraftment. The plan is for me to continue sprycel after some time. I feel that the medical field has many options for treating us who have CML. I am a single mother of a 13 year old, 16 year old, 24 year old and one granddaughter with another one due any day. They are my main motivation to keep me going. Hang in there, remember when one door closes, God makes sure another one (or two) open. -- In , letitbe@... wrote: > > Hello All, I know I have gotten out of the posting habit the last many > months, just have had such an overflowing plate. My wife has been away for > months, taking care of her mom who was diagnosed with stage four lung cancer, so I > have been super wrapped up taking care of so much more around here than > normal. > > Well, I am not surprised with the news from my Onc, Gleevec is slowly > loosing its effectivenss with me. I am not sure how I knew, just had that feeling > inside, I suppose. He never even mentioned he has suspicions, but I know how > I feel and I watched over the last many months my CBC's, I just had a > feeling. Anyhow, I had a BMB a few weeks back, the results were pretty clear, plus > I am one that has dealt with the side effects of Gleevec. Also, the 30 days > prior to the BMB, we adjusted the Gleevec dosage to 600Mg. I must say, it > reminded me of when I first started Gleevec, it was physical prison. > > I had asked this once before, in a different way and more hypothetical than > anything. My Onc said when the Gleevec runs out start Sprycell the next day, > no wash out period. Some on this forum had stated that same protocol a few > months ago. What I am curious, is there any combining of the meds side > effects to be cautious of, should I maybe wait a week in between? I just found > this interesting, I have got to be as careful as possible, staying healthy. I > already know my wife will not be home the last two weeks of Jan, she will be > back at her mom's. Basically that is the plan, she will take the latter two > weeks of each month to stay with her mom, helping her out and making things > as easy as possible for her. > > Over all, I am pretty excited to go to a course of action. I am not happy > on Gleevec, how I feel, the fatigue has slowed me so far down and made some of > the heavier task I used to enjoy near impossible. I really hope maybe by > summer to be feeling much better. It is not that I feel horrible, I just do > not feel great and I lack motivation, as I know I now have physical limitations > due to the fatigue and headaches. > > I also am a bit nervous to know that I have now worn out the first line of > defense to CML. > > Anyhow, thanks for any experiences that you car share. > > Regards, > Chris > > Dx 01 March 2007 > Gleevec 400Mg > Husband to Tabitha > Father to , just turned 15 > **************One site keeps you connected to all your email: AOL Mail, > Gmail, and Mail. Try it now. > (http://www.aol.com/?optin=new- dp & icid=aolcom40vanity & ncid=emlcntaolcom00000025) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Dear I was on Gleevec for about 9 months. Never felt so terrible in my life.!!!Then I got a horrible rash and it would not go away. I was scared on my face, arms legs, etc. They had me stop Gleevec and wait two weeks and then started Sprycel. I was on that for three years. Had some side effects but not like Gleevec. Then after three years I got Plural effusion and had to stop it. Waited about a month and started Tasigna. I have never felt so so well in 5 years. And I am PCRU!!! What a difference there is from one medication to another. I know you will be glad you are off gleevec. Good luck to you and keep us posted. Aloha Sharon _____ From: [mailto: ] On Behalf Of letitbe@... Sent: Sunday, December 28, 2008 6:55 AM Subject: [ ] time for me to switch from Gleevec to Sprycell Hello All, I know I have gotten out of the posting habit the last many months, just have had such an overflowing plate. My wife has been away for months, taking care of her mom who was diagnosed with stage four lung cancer, so I have been super wrapped up taking care of so much more around here than normal. Well, I am not surprised with the news from my Onc, Gleevec is slowly loosing its effectivenss with me. I am not sure how I knew, just had that feeling inside, I suppose. He never even mentioned he has suspicions, but I know how I feel and I watched over the last many months my CBC's, I just had a feeling. Anyhow, I had a BMB a few weeks back, the results were pretty clear, plus I am one that has dealt with the side effects of Gleevec. Also, the 30 days prior to the BMB, we adjusted the Gleevec dosage to 600Mg. I must say, it reminded me of when I first started Gleevec, it was physical prison. I had asked this once before, in a different way and more hypothetical than anything. My Onc said when the Gleevec runs out start Sprycell the next day, no wash out period. Some on this forum had stated that same protocol a few months ago. What I am curious, is there any combining of the meds side effects to be cautious of, should I maybe wait a week in between? I just found this interesting, I have got to be as careful as possible, staying healthy. I already know my wife will not be home the last two weeks of Jan, she will be back at her mom's. Basically that is the plan, she will take the latter two weeks of each month to stay with her mom, helping her out and making things as easy as possible for her. Over all, I am pretty excited to go to a course of action. I am not happy on Gleevec, how I feel, the fatigue has slowed me so far down and made some of the heavier task I used to enjoy near impossible. I really hope maybe by summer to be feeling much better. It is not that I feel horrible, I just do not feel great and I lack motivation, as I know I now have physical limitations due to the fatigue and headaches. I also am a bit nervous to know that I have now worn out the first line of defense to CML. Anyhow, thanks for any experiences that you car share. Regards, Chris Dx 01 March 2007 Gleevec 400Mg Husband to Tabitha Father to , just turned 15 **************One site keeps you connected to all your email: AOL Mail, Gmail, and Mail. Try it now. (http://www.aol. <http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000 025> com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000025) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Hi , most likely you will love sprycel so much better than Gleevec. I reached CCR in 10 months on it, with almost no side effects, but then it was early in the trial at mDACC and I was only on 70 mg a day. But for me it only lasted 1 1/2 years and I had problems with pleural effusion, and am now in a trial, XL228. Good luck with Sprycel, I loved it and wish I could go back on it. 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: Sharon & Denny <onthewtr@...> Subject: RE: [ ] time for me to switch from Gleevec to Sprycell Date: Sunday, December 28, 2008, 12:11 PM Dear I was on Gleevec for about 9 months. Never felt so terrible in my life.!!!Then I got a horrible rash and it would not go away. I was scared on my face, arms legs, etc. They had me stop Gleevec and wait two weeks and then started Sprycel. I was on that for three years. Had some side effects but not like Gleevec. Then after three years I got Plural effusion and had to stop it. Waited about a month and started Tasigna. I have never felt so so well in 5 years. And I am PCRU!!! What a difference there is from one medication to another. I know you will be glad you are off gleevec. Good luck to you and keep us posted. Aloha Sharon _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of letitbeaol (DOT) com Sent: Sunday, December 28, 2008 6:55 AM groups (DOT) com Subject: [ ] time for me to switch from Gleevec to Sprycell Hello All, I know I have gotten out of the posting habit the last many months, just have had such an overflowing plate. My wife has been away for months, taking care of her mom who was diagnosed with stage four lung cancer, so I have been super wrapped up taking care of so much more around here than normal. Well, I am not surprised with the news from my Onc, Gleevec is slowly loosing its effectivenss with me. I am not sure how I knew, just had that feeling inside, I suppose. He never even mentioned he has suspicions, but I know how I feel and I watched over the last many months my CBC's, I just had a feeling. Anyhow, I had a BMB a few weeks back, the results were pretty clear, plus I am one that has dealt with the side effects of Gleevec. Also, the 30 days prior to the BMB, we adjusted the Gleevec dosage to 600Mg. I must say, it reminded me of when I first started Gleevec, it was physical prison. I had asked this once before, in a different way and more hypothetical than anything. My Onc said when the Gleevec runs out start Sprycell the next day, no wash out period. Some on this forum had stated that same protocol a few months ago. What I am curious, is there any combining of the meds side effects to be cautious of, should I maybe wait a week in between? I just found this interesting, I have got to be as careful as possible, staying healthy. I already know my wife will not be home the last two weeks of Jan, she will be back at her mom's. Basically that is the plan, she will take the latter two weeks of each month to stay with her mom, helping her out and making things as easy as possible for her. Over all, I am pretty excited to go to a course of action. I am not happy on Gleevec, how I feel, the fatigue has slowed me so far down and made some of the heavier task I used to enjoy near impossible. I really hope maybe by summer to be feeling much better. It is not that I feel horrible, I just do not feel great and I lack motivation, as I know I now have physical limitations due to the fatigue and headaches. I also am a bit nervous to know that I have now worn out the first line of defense to CML. Anyhow, thanks for any experiences that you car share. Regards, Chris Dx 01 March 2007 Gleevec 400Mg Husband to Tabitha Father to , just turned 15 ************ **One site keeps you connected to all your email: AOL Mail, Gmail, and Mail. Try it now. (http://www.aol. <http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco m00000 025> com/?optin=new- dp & icid=aolcom40 vanity & ncid= emlcntaolcom0000 0025) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Hi again as I recall, and it's been 4 years since I was on Gleevec, there is a huge difference. No rash, no diarrhea, no nausea, no cramps, no aches and pains, no fatigue; I really had no side effects on Sprycel until the PE kicked in. You should love it....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: Sharon & Denny <onthewtrdiscobay (DOT) net> Subject: RE: [ ] time for me to switch from Gleevec to Sprycell groups (DOT) com Date: Sunday, December 28, 2008, 12:11 PM Dear I was on Gleevec for about 9 months. Never felt so terrible in my life.!!!Then I got a horrible rash and it would not go away. I was scared on my face, arms legs, etc. They had me stop Gleevec and wait two weeks and then started Sprycel. I was on that for three years. Had some side effects but not like Gleevec. Then after three years I got Plural effusion and had to stop it. Waited about a month and started Tasigna. I have never felt so so well in 5 years. And I am PCRU!!! What a difference there is from one medication to another. I know you will be glad you are off gleevec. Good luck to you and keep us posted. Aloha Sharon _____ From: groups (DOT) com [mailto:] On Behalf Of letitbeaol (DOT) com Sent: Sunday, December 28, 2008 6:55 AM groups (DOT) com Subject: [ ] time for me to switch from Gleevec to Sprycell Hello All, I know I have gotten out of the posting habit the last many months, just have had such an overflowing plate. My wife has been away for months, taking care of her mom who was diagnosed with stage four lung cancer, so I have been super wrapped up taking care of so much more around here than normal. Well, I am not surprised with the news from my Onc, Gleevec is slowly loosing its effectivenss with me. I am not sure how I knew, just had that feeling inside, I suppose. He never even mentioned he has suspicions, but I know how I feel and I watched over the last many months my CBC's, I just had a feeling. Anyhow, I had a BMB a few weeks back, the results were pretty clear, plus I am one that has dealt with the side effects of Gleevec. Also, the 30 days prior to the BMB, we adjusted the Gleevec dosage to 600Mg. I must say, it reminded me of when I first started Gleevec, it was physical prison. I had asked this once before, in a different way and more hypothetical than anything. My Onc said when the Gleevec runs out start Sprycell the next day, no wash out period. Some on this forum had stated that same protocol a few months ago. What I am curious, is there any combining of the meds side effects to be cautious of, should I maybe wait a week in between? I just found this interesting, I have got to be as careful as possible, staying healthy. I already know my wife will not be home the last two weeks of Jan, she will be back at her mom's. Basically that is the plan, she will take the latter two weeks of each month to stay with her mom, helping her out and making things as easy as possible for her. Over all, I am pretty excited to go to a course of action. I am not happy on Gleevec, how I feel, the fatigue has slowed me so far down and made some of the heavier task I used to enjoy near impossible. I really hope maybe by summer to be feeling much better. It is not that I feel horrible, I just do not feel great and I lack motivation, as I know I now have physical limitations due to the fatigue and headaches. I also am a bit nervous to know that I have now worn out the first line of defense to CML. Anyhow, thanks for any experiences that you car share. Regards, Chris Dx 01 March 2007 Gleevec 400Mg Husband to Tabitha Father to , just turned 15 ************ **One site keeps you connected to all your email: AOL Mail, Gmail, and Mail. Try it now. (http://www.aol. <http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco m00000 025> com/?optin=new- dp & icid=aolcom40 vanity & ncid= emlcntaolcom0000 0025) Quote Link to comment Share on other sites More sharing options...
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