Guest guest Posted September 4, 2009 Report Share Posted September 4, 2009 I just got a call from Dr. Talpaz's office about the new trial to go off gleevec. You had to have been an Interferon user, and have done well, along with being on Gleevec and being undetectable for a certain length of time. so far, I seem to qualify. I need everyone's opinion. This is a big step. My husband feels that if it isn't broken, dont fix it. this is a big step. It makes me nervous, but I really do want to be able to get off all drugs. I have not contacted Dr. Mauro as yet about this. He knows of my desire, but isn't all that pleased with it. Thanks everyone. INF 2/2000 - 6/2001 Gleevec 400 mg for 6 months Gleevec with INF for 1 1/2 years Gleevec 600 mg 11/2003 to present Undetectable for at least 4 years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2009 Report Share Posted September 4, 2009 Hi : I do not know if I am missing some information here, but from what I am reading. You have been undetectable for 4 years on Gleevec. Your on a high dose, but its working for you. Why would you try something else that could possibly disrupt your good response. Are you having side effects from the 600 mg. Apparently you have been able to cope for 4 years if you have had any. I agree with your husband. Dr. Talpaz is a excellent doctor from what I have heard, but I do not understand making the change. Suzzie From: Orenstein <scrappygirl123@...> Subject: [ ] New Trial Date: Friday, September 4, 2009, 4:31 PM I just got a call from Dr. Talpaz's office about the new trial to go off gleevec. You had to have been an Interferon user, and have done well, along with being on Gleevec and being undetectable for a certain length of time. so far, I seem to qualify. I need everyone's opinion. This is a big step. My husband feels that if it isn't broken, dont fix it. this is a big step. It makes me nervous, but I really do want to be able to get off all drugs. I have not contacted Dr. Mauro as yet about this. He knows of my desire, but isn't all that pleased with it. Thanks everyone. INF 2/2000 - 6/2001 Gleevec 400 mg for 6 months Gleevec with INF for 1 1/2 years Gleevec 600 mg 11/2003 to present Undetectable for at least 4 years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2009 Report Share Posted September 5, 2009 , Me too. I am planning on doing the trial with pegulated interferon and Gleevec. The goal is to become undetectable and then get off all meds. But, my hubby is pushing it! He'd really like to see me go off all the meds and be " healthy " again. All before I am 40. The two older kids would just be graduating high school... and the younger one in 6th grade. I am nervous. I REALLY don't want to feel worse... but the thought of getting off all drugs is worth it in my opinion. Perhaps, I'll see you at U of M someday!! Tammy _____ From: Orenstein [mailto:scrappygirl123@...] Sent: Friday, September 04, 2009 4:31 PM Subject: [ ] New Trial I just got a call from Dr. Talpaz's office about the new trial to go off gleevec. You had to have been an Interferon user, and have done well, along with being on Gleevec and being undetectable for a certain length of time. so far, I seem to qualify. I need everyone's opinion. This is a big step. My husband feels that if it isn't broken, dont fix it. this is a big step. It makes me nervous, but I really do want to be able to get off all drugs. I have not contacted Dr. Mauro as yet about this. He knows of my desire, but isn't all that pleased with it. Thanks everyone. INF 2/2000 - 6/2001 Gleevec 400 mg for 6 months Gleevec with INF for 1 1/2 years Gleevec 600 mg 11/2003 to present Undetectable for at least 4 years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2009 Report Share Posted September 5, 2009 Hi , If it was me, I would do it. Dr. Mauro was my trial doctor and I know how he thinks. His attitude is that it is unknown territory and why take a chance. On the flip side, Dr. Talpaz is probably the best CML doctor around. He certainly has been involved in running clinical trials for all the CML drugs and will know exactly what to do if you relapse from PCRU. The two pluses that I see is 1) there is a chance that you will remain PCRU and 2) by participating in the trial you are helping gain knowledge for all the other CML patients out there. Zavie Zavie (age 71) 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 3.7 log reduction Jan/09 3.8 log reduction May/09 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of Orenstein Sent: September 4, 2009 4:31 PM Subject: [ ] New Trial I just got a call from Dr. Talpaz's office about the new trial to go off gleevec. You had to have been an Interferon user, and have done well, along with being on Gleevec and being undetectable for a certain length of time. so far, I seem to qualify. I need everyone's opinion. This is a big step. My husband feels that if it isn't broken, dont fix it. this is a big step. It makes me nervous, but I really do want to be able to get off all drugs. I have not contacted Dr. Mauro as yet about this. He knows of my desire, but isn't all that pleased with it. Thanks everyone. INF 2/2000 - 6/2001 Gleevec 400 mg for 6 months Gleevec with INF for 1 1/2 years Gleevec 600 mg 11/2003 to present Undetectable for at least 4 years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2009 Report Share Posted September 5, 2009 , I'm agrre with Mr.Zavie . Somebody , somewhere , should do something to find a cure . You're in good hand with those specialists . We are all dreaming to stop to take those meds . Think about that and your decision will be the good one . Emile #527 of Zavie's Club Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2009 Report Share Posted September 5, 2009 I don't post on this site very often any longer, but thought I'd better add my comments to this thread. I've been off Gleevec five months (since April 9), my idea, not on any official trial but with my oncologist's blessing (Dr. Neil Shah, considered a CML expert). You might call it a clinical trial of one. We had discussed me doing this for at least a year; I was encouraged by the results of the STIM trial in France, where the best results were achieved for those who had previously been on Interferon, as I had. I was diagnosed in June, 2000; was on Interferon through November; started Gleevec 400 mg in the expanded clinical trial at Stanford in December; reached CCR in May, 2001 (#66 on Zavie's list); was PCRU in July, 2001, but lost it when I had to discontinue Gleevec because of elevated LFTs. Resumed Gleevec in May, 2002, and was again PCRU in September, 2002, and remain so. This was something I strongly wanted to try and Dr. Shah has told me he thinks the risks are fairly minimal. A Substantial number of patients remain PCRU more than two years after the STIM study began. The trial patients who relapsed (about half) became PCRU again when they resumed Gleevec. As an aside, it's been a lovely vacation from side effects. Within ten days my main complaint of constant fatigue was gone. I no longer take two naps a day, rarely have diarrhea, have no more muscle cramps and can see my eyes when I wake up in the morning. Best of all my persistent iron deficient anemia seems to have disappeared since I discontinued Gleevec. We're not exactly sure why yet. It came on during the past three to four years and gradually became worse and worse, down to 7.2 hgb, requiring transfusions and repeat iron infusions. It was a challenge to keep my hemoglobin over 10, but in three months without Gleevec (with no added treatment) it rose to 12.3. So far I remain PCRU. Next test October 7. B from California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2009 Report Share Posted September 5, 2009 Hi , I would normally never presume to advise someone whether or not to go on a new trial, but because you asked for opinions I will chime in here......If it were me, I'd go for it! Whatever you decide, we're behind you 100% !! JoAnn > I just got a call from Dr. Talpaz's office about the new trial to go > off gleevec. You had to have been an Interferon user, and have done > well, along with being on Gleevec and being undetectable for a certain > length of time. so far, I seem to qualify. I need everyone's > opinion. This is a big step. My husband feels that if it isn't > broken, dont fix it. this is a big step. It makes me nervous, but I > really do want to be able to get off all drugs. I have not contacted > Dr. Mauro as yet about this. He knows of my desire, but isn't all > that pleased with it. > > Thanks everyone. > > > > INF 2/2000 - 6/2001 > Gleevec 400 mg for 6 months > Gleevec with INF for 1 1/2 years > Gleevec 600 mg 11/2003 to present > Undetectable for at least 4 years. > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.