Guest guest Posted October 12, 2008 Report Share Posted October 12, 2008 Thanks For info my 600 is the same ,I have to have 2 orders unless I want 6 -100 pills. Will keep on it for another 90 days maybe I will get to 00000 and go to 400. How long you been on the 600. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2008 Report Share Posted October 12, 2008 , I have been on 600mg for about 7 years now thanks to Dr. Druker and Mauro. I have been undetectable by OHSU standards for about 4 years now. They don't want to reduce my dosage as it is working at this level. why reduce as soon as you are PCR negative? YOu may need that dose to remain there. I think that Dr. Mauro and Dr. Drukers thoughtds are that 600mg works much better. dx 8/1999 From: paulorkay@... Date: Sat, 11 Oct 2008 21:29:31 -0700 Subject: Re: [ ] :SUE PCRU Thanks For info my 600 is the same ,I have to have 2 orders unless I want 6 -100 pills. Will keep on it for another 90 days maybe I will get to 00000 and go to 400. How long you been on the 600. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 Hi , I am new to this group. I was diagnosed with CML in April 2006, at the time I was at the accelerated stage. I was doing well on Gleevec however in November of that year my PCR went from .75 to 5.62 (approx.) I spoke to my Dr. in Boise and decided to see Dr. Mauro in Portland. I have been treating with him since February 2007. He recommend I start on Sprycel, originally on 100 mg of Sprycel now on 140 mg. I am glad to find this group, lots of information. I am going to Las Vegas tomorrow for a girl's trip, when I get back I will post to the group with all my stats. Glad to hear of someone else treating at OHSU. Take care, Bernadette ________________________________ From: Cohen <scrappygirl123@...> Sent: Sunday, October 12, 2008 5:51:03 AM Subject: RE: [ ] :SUE PCRU , I have been on 600mg for about 7 years now thanks to Dr. Druker and Mauro. I have been undetectable by OHSU standards for about 4 years now. They don't want to reduce my dosage as it is working at this level. why reduce as soon as you are PCR negative? YOu may need that dose to remain there. I think that Dr. Mauro and Dr. Drukers thoughtds are that 600mg works much better. dx 8/1999 From: paulorkay@... Date: Sat, 11 Oct 2008 21:29:31 -0700 Subject: Re: [ ] :SUE PCRU Thanks For info my 600 is the same ,I have to have 2 orders unless I want 6 -100 pills. Will keep on it for another 90 days maybe I will get to 00000 and go to 400. How long you been on the 600. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 Oh my 140mg !!! You are my hero!!!! How do you handle it! Congrats on the good results!!! Sent from my Verizon Wireless BlackBerry Re: [ ] :SUE PCRU Thanks For info my 600 is the same ,I have to have 2 orders unless I want 6 -100 pills. Will keep on it for another 90 days maybe I will get to 00000 and go to 400. How long you been on the 600. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2008 Report Share Posted October 22, 2008 Hi All, Back from my trip, had a great time in Las Vegas at a Jimmy Buffet concert with all the parrot heads. I think I am handling the Sprycel fairly well, I have had lots of weight gain, total about 20 lbs, so I am trying to watch what I eat and start my exercise program again, Before diagnosis I was exercises 3 to 5 days a week. My main side effect, besides the weight gain, is carpal tunnel, very painful, so I take 20mg of lasix. Does anyone else have this problem? It seems my water retention is in my arms which causes the carpal tunnel problem. FYI I was diagnosed on Apirl 19, 2006 with CML WBC 414.7 BCR-ABL 12.934 10% - 20% peripheral blasts Spleen 19cm Right eye hemorrhage caused from the leukemia I was hospitalized for 4 days Gleevec 400 mg daily with 500 mg hydroxyurea daily August 29, 2006 BCR-ABL 0.750 November 29, 2006 BCR-ABL 5.6 Gleevec increased to 600mg First visit with Dr. Mauro OHSU 2/28/2007 BCR-ABL 2.4 Log Drop 0.25 Changed from Gleevec to Sprycel 50 mg daily 4/2/2007 BCR-ABL 1.4 Log Drop 0.48 6/11/2007 BCR-ABL 0.55 Log Drop 0.89 8/20/2007 BCR-ABL 0.27 Log Drop 1.2 10/22/2007 BCR-ABL 0.22 Log Drop 1.3 11/7/2007 Cytogenetic Remission !!!! 1/23/2008 BCR-ABL 0.25 3/11/2008 BCR-ABL 0.47 BCR-ABL International Scale 3.2 Sprycel increased to 70mg daily 7/24/2008 0.18 BCR-ABL International Scale 0.95 I will be getting another BCR-ABL test in the next couple of weeks. ________________________________ From: " Sionito@... " <Sionito@...> Sent: Wednesday, October 15, 2008 4:09:21 PM Subject: Re: [ ] :SUE PCRU Oh my 140mg !!! You are my hero!!!! How do you handle it! Congrats on the good results!!! Sent from my Verizon Wireless BlackBerry Re: [ ] :SUE PCRU Thanks For info my 600 is the same ,I have to have 2 orders unless I want 6 -100 pills. Will keep on it for another 90 days maybe I will get to 00000 and go to 400. How long you been on the 600. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2008 Report Share Posted October 22, 2008 Hi Bernadette, Welcome to the best CML support group on the internet. Dr. Mauro was my trial doctor back in 2001. You are so fortunate to have him treating your CML. Achieving CCR gets you a number in the Zero Club. So ......... O!!! YIPPEEE!!! Number 1223 in the Zero Club 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 3.6 log reduction Sep/08 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie Re: [ ] :SUE PCRU Thanks For info my 600 is the same ,I have to have 2 orders unless I want 6 -100 pills. Will keep on it for another 90 days maybe I will get to 00000 and go to 400. How long you been on the 600. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2008 Report Share Posted October 22, 2008 Congrats Bernadette!!! Sent from my Verizon Wireless BlackBerry Re: [ ] :SUE PCRU Thanks For info my 600 is the same ,I have to have 2 orders unless I want 6 -100 pills. Will keep on it for another 90 days maybe I will get to 00000 and go to 400. How long you been on the 600. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 That is great, I didn't realize that thought I had to be PCRU! Bernadette PS Has anyone had trouble with being clumsy or falling (miss a step)? I have been so clumsy lately, wondering it Sprycel somehow causes that??? ________________________________ From: Zavie <zmiller@...> Cc: Bernadette Buentgen <buentgen@...> Sent: Wednesday, October 22, 2008 2:39:53 PM Subject: RE: [ ] :SUE PCRU Hi Bernadette, Welcome to the best CML support group on the internet. Dr. Mauro was my trial doctor back in 2001. You are so fortunate to have him treating your CML. Achieving CCR gets you a number in the Zero Club. So ......... O!!! YIPPEEE!!! Number 1223 in the Zero Club 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 3.6 log reduction Sep/08 e-mail: zmillersympatico (DOT) ca Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie Re: [ ] :SUE PCRU Thanks For info my 600 is the same ,I have to have 2 orders unless I want 6 -100 pills. Will keep on it for another 90 days maybe I will get to 00000 and go to 400. How long you been on the 600. Quote Link to comment Share on other sites More sharing options...
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