Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Bonnie: I'm interested in your comment about China. Does the literature mention how they use it (a low dose forever ora temporary dose of it) or what happens when they stop taking it? Yes, I'm very interested in learning more about this. Sydney At 01:22 PM 1/23/01 -0500, you wrote: Sydney, This is my guess too.I don't see how one could get RU486.Think of the risk the doctor would be putting himself at-its not approved for fibroids,okay neither is progesterone,but a lot of doctors prescribe it anyway,but they have collegues who will stand by them.Give RU486 to a patient and what do you do with complications,how do you justify that your peers are doing the same.I bet there is confusion with Lupron. Bonnie P.S. I understand RU 486 is approved for fibroids in China>I have the info.if yo're interested. Sydney Lagier wrote: > You got RU-486??? How? I can't seem to get anyone to let me try > it. I thought you had to be part of a study. (Are you sure you're > not talking about Lupron?) > > At 04:36 PM 1/23/01 +0000, you wrote: > >> I got this drug from a doctor who no longer practices in Alabama. I >> was not >> part of a study and I hate I ever took that drug. >> >> >> > >> >Reply-To: uterinefibroidsegroups >> >To: uterinefibroidsegroups >> >Subject: Re: hello, new to group >> >Date: Tue, 23 Jan 2001 07:59:34 -0800 >> > >> ><< smime.p7s >> >> >> _________________________________________________________________ >> Get your FREE download of MSN Explorer at http://explorer.msn.com >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Bonnie: I'm interested in your comment about China. Does the literature mention how they use it (a low dose forever ora temporary dose of it) or what happens when they stop taking it? Yes, I'm very interested in learning more about this. Sydney At 01:22 PM 1/23/01 -0500, you wrote: Sydney, This is my guess too.I don't see how one could get RU486.Think of the risk the doctor would be putting himself at-its not approved for fibroids,okay neither is progesterone,but a lot of doctors prescribe it anyway,but they have collegues who will stand by them.Give RU486 to a patient and what do you do with complications,how do you justify that your peers are doing the same.I bet there is confusion with Lupron. Bonnie P.S. I understand RU 486 is approved for fibroids in China>I have the info.if yo're interested. Sydney Lagier wrote: > You got RU-486??? How? I can't seem to get anyone to let me try > it. I thought you had to be part of a study. (Are you sure you're > not talking about Lupron?) > > At 04:36 PM 1/23/01 +0000, you wrote: > >> I got this drug from a doctor who no longer practices in Alabama. I >> was not >> part of a study and I hate I ever took that drug. >> >> >> > >> >Reply-To: uterinefibroidsegroups >> >To: uterinefibroidsegroups >> >Subject: Re: hello, new to group >> >Date: Tue, 23 Jan 2001 07:59:34 -0800 >> > >> ><< smime.p7s >> >> >> _________________________________________________________________ >> Get your FREE download of MSN Explorer at http://explorer.msn.com >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 The Center for Uterine Fibroids(this may not be the precise name) at Brigham and Women's Hospital in Boston,which is a teaching hospital for Harvard is conducting research on RU486 and fibroids.Contact Louise Greenberg LGREENBERG@... DebbieSzc@... wrote: > > > In a message dated 01-01-23 07:14:42 EST, you write: > > > > > > > > > RU-486 isn't generally available for fibroid treatment (yet). I'm > in a study, > > taking 10 mg a day. I haven't had any adverse symptoms; the only > thing is > > that my periods have stopped, which in my book right now is a good > thing. And > > after 2 months on it, the fibroids are starting to shrink. I'm down > about 25% > > from when I started in the study (and my fibroids were extremely > big. I was > > about 30 week size at the start; the estimate is now 22 > weeks....and > > dropping, I hope!) > > > . > > , Do you know how I can find out if there is a clinical drug > study for the RU-486 in my area? (VA) I have checked the Center > Watch Clinical Trial listings but did not find any. Thanks for any > info. Debbie (can anyone tell me what " wrap words " means on the > reply page? Thanks > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 The Center for Uterine Fibroids(this may not be the precise name) at Brigham and Women's Hospital in Boston,which is a teaching hospital for Harvard is conducting research on RU486 and fibroids.Contact Louise Greenberg LGREENBERG@... DebbieSzc@... wrote: > > > In a message dated 01-01-23 07:14:42 EST, you write: > > > > > > > > > RU-486 isn't generally available for fibroid treatment (yet). I'm > in a study, > > taking 10 mg a day. I haven't had any adverse symptoms; the only > thing is > > that my periods have stopped, which in my book right now is a good > thing. And > > after 2 months on it, the fibroids are starting to shrink. I'm down > about 25% > > from when I started in the study (and my fibroids were extremely > big. I was > > about 30 week size at the start; the estimate is now 22 > weeks....and > > dropping, I hope!) > > > . > > , Do you know how I can find out if there is a clinical drug > study for the RU-486 in my area? (VA) I have checked the Center > Watch Clinical Trial listings but did not find any. Thanks for any > info. Debbie (can anyone tell me what " wrap words " means on the > reply page? Thanks > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Sydney, All I know about it was supplied me by Heleen at the University of Rochester,I think she is part of our group. The First Affiliated Hospital of Beijing Medical University in Beijing.The people involved are Youlin Yang,Zheng Shurong,Li Kemin et al.They have a web site,but I can't find it this instant,however if you do a "search" and type in First Affliated etc. you should get somewhere.I was going to follow this lead and I'm glad you will,right now I have some breakthrough bleeding from the progesterone I was telling everyone that was working so well,so I'm a bit on edge.However,would you please keep me,and others interested,in the loop? Bonnie Sydney Lagier wrote: Bonnie: I'm interested in your comment about China. Does the literature mention how they use it (a low dose forever ora temporary dose of it) or what happens when they stop taking it? Yes, I'm very interested in learning more about this. Sydney At 01:22 PM 1/23/01 -0500, you wrote: Sydney, This is my guess too.I don't see how one could get RU486.Think of the risk the doctor would be putting himself at-its not approved for fibroids,okay neither is progesterone,but a lot of doctors prescribe it anyway,but they have collegues who will stand by them.Give RU486 to a patient and what do you do with complications,how do you justify that your peers are doing the same.I bet there is confusion with Lupron. Bonnie P.S. I understand RU 486 is approved for fibroids in China>I have the info.if yo're interested. Sydney Lagier wrote: > You got RU-486??? How? I can't seem to get anyone to let me try > it. I thought you had to be part of a study. (Are you sure you're > not talking about Lupron?) > > At 04:36 PM 1/23/01 +0000, you wrote: > >> I got this drug from a doctor who no longer practices in Alabama. I >> was not >> part of a study and I hate I ever took that drug. >> >> >> > >> >Reply-To: uterinefibroidsegroups >> >To: uterinefibroidsegroups >> >Subject: Re: hello, new to group >> >Date: Tue, 23 Jan 2001 07:59:34 -0800 >> > >> ><< smime.p7s >> >> >> _________________________________________________________________ >> Get your FREE download of MSN Explorer at http://explorer.msn.com >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Sydney, All I know about it was supplied me by Heleen at the University of Rochester,I think she is part of our group. The First Affiliated Hospital of Beijing Medical University in Beijing.The people involved are Youlin Yang,Zheng Shurong,Li Kemin et al.They have a web site,but I can't find it this instant,however if you do a "search" and type in First Affliated etc. you should get somewhere.I was going to follow this lead and I'm glad you will,right now I have some breakthrough bleeding from the progesterone I was telling everyone that was working so well,so I'm a bit on edge.However,would you please keep me,and others interested,in the loop? Bonnie Sydney Lagier wrote: Bonnie: I'm interested in your comment about China. Does the literature mention how they use it (a low dose forever ora temporary dose of it) or what happens when they stop taking it? Yes, I'm very interested in learning more about this. Sydney At 01:22 PM 1/23/01 -0500, you wrote: Sydney, This is my guess too.I don't see how one could get RU486.Think of the risk the doctor would be putting himself at-its not approved for fibroids,okay neither is progesterone,but a lot of doctors prescribe it anyway,but they have collegues who will stand by them.Give RU486 to a patient and what do you do with complications,how do you justify that your peers are doing the same.I bet there is confusion with Lupron. Bonnie P.S. I understand RU 486 is approved for fibroids in China>I have the info.if yo're interested. Sydney Lagier wrote: > You got RU-486??? How? I can't seem to get anyone to let me try > it. I thought you had to be part of a study. (Are you sure you're > not talking about Lupron?) > > At 04:36 PM 1/23/01 +0000, you wrote: > >> I got this drug from a doctor who no longer practices in Alabama. I >> was not >> part of a study and I hate I ever took that drug. >> >> >> > >> >Reply-To: uterinefibroidsegroups >> >To: uterinefibroidsegroups >> >Subject: Re: hello, new to group >> >Date: Tue, 23 Jan 2001 07:59:34 -0800 >> > >> ><< smime.p7s >> >> >> _________________________________________________________________ >> Get your FREE download of MSN Explorer at http://explorer.msn.com >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Hi , Are things getting confused?I'm on progesterone,is that what you mean,or RU486 and our common friend is the great Heleen? Please answer back and set me straight,I'm peri-menopausal and I can have a partially fried brain at times Bonnie maryl38230@... wrote: > Hi Bonnie, > > Sounds like we have an acquaintance in common. How many mgs are you taking? > > > > In a message dated 01-01-23 15:32:26 EST, you write: > > << Sydney, > All I know about it was supplied me by Heleen at the University of > Rochester,I think she is part of our group. > The First Affiliated Hospital of Beijing Medical University in > Beijing.The people involved are Youlin Yang,Zheng Shurong,Li Kemin et > al.They have a web site,but I can't find it this instant,however if you > do a " search " and type in First Affliated etc. you should get > somewhere.I was going to follow this lead and I'm glad you will,right > now I have some breakthrough bleeding from the progesterone I was > telling everyone that was working so well,so I'm a bit on > edge.However,would you please keep me,and others interested,in the loop? > > Bonnie > > Sydney Lagier wrote: > > > Bonnie: > > > > I'm interested in your comment about China. Does the literature > > mention how they use it (a low dose forever ora temporary dose of it) > > or what happens when they stop taking it? Yes, I'm very interested in > > learning more about this. > > > > Sydney > > > > At 01:22 PM 1/23/01 -0500, you wrote: > > > >> Sydney, > >> This is my guess too.I don't see how one could get RU486.Think of > >> the > >> risk the doctor would be putting himself at-its not approved for > >> fibroids,okay neither is progesterone,but a lot of doctors prescribe > >> it > >> anyway,but they have collegues who will stand by them.Give RU486 to > >> a > >> patient and what do you do with complications,how do you justify > >> that > >> your peers are doing the same.I bet there is confusion with Lupron. > >> Bonnie > >> P.S. I understand RU 486 is approved for fibroids in China>I have > >> the > >> info.if yo're interested. > >> > >> Sydney Lagier wrote: > >> > >> > You got RU-486??? How? I can't seem to get anyone to let me try > >> > >> > it. I thought you had to be part of a study. (Are you sure > >> you're > >> > not talking about Lupron?) > >> > > >> > At 04:36 PM 1/23/01 +0000, you wrote: > >> > > >> >> I got this drug from a doctor who no longer practices in > >> Alabama. I > >> >> was not > >> >> part of a study and I hate I ever took that drug. > >> >> > >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Hi , Are things getting confused?I'm on progesterone,is that what you mean,or RU486 and our common friend is the great Heleen? Please answer back and set me straight,I'm peri-menopausal and I can have a partially fried brain at times Bonnie maryl38230@... wrote: > Hi Bonnie, > > Sounds like we have an acquaintance in common. How many mgs are you taking? > > > > In a message dated 01-01-23 15:32:26 EST, you write: > > << Sydney, > All I know about it was supplied me by Heleen at the University of > Rochester,I think she is part of our group. > The First Affiliated Hospital of Beijing Medical University in > Beijing.The people involved are Youlin Yang,Zheng Shurong,Li Kemin et > al.They have a web site,but I can't find it this instant,however if you > do a " search " and type in First Affliated etc. you should get > somewhere.I was going to follow this lead and I'm glad you will,right > now I have some breakthrough bleeding from the progesterone I was > telling everyone that was working so well,so I'm a bit on > edge.However,would you please keep me,and others interested,in the loop? > > Bonnie > > Sydney Lagier wrote: > > > Bonnie: > > > > I'm interested in your comment about China. Does the literature > > mention how they use it (a low dose forever ora temporary dose of it) > > or what happens when they stop taking it? Yes, I'm very interested in > > learning more about this. > > > > Sydney > > > > At 01:22 PM 1/23/01 -0500, you wrote: > > > >> Sydney, > >> This is my guess too.I don't see how one could get RU486.Think of > >> the > >> risk the doctor would be putting himself at-its not approved for > >> fibroids,okay neither is progesterone,but a lot of doctors prescribe > >> it > >> anyway,but they have collegues who will stand by them.Give RU486 to > >> a > >> patient and what do you do with complications,how do you justify > >> that > >> your peers are doing the same.I bet there is confusion with Lupron. > >> Bonnie > >> P.S. I understand RU 486 is approved for fibroids in China>I have > >> the > >> info.if yo're interested. > >> > >> Sydney Lagier wrote: > >> > >> > You got RU-486??? How? I can't seem to get anyone to let me try > >> > >> > it. I thought you had to be part of a study. (Are you sure > >> you're > >> > not talking about Lupron?) > >> > > >> > At 04:36 PM 1/23/01 +0000, you wrote: > >> > > >> >> I got this drug from a doctor who no longer practices in > >> Alabama. I > >> >> was not > >> >> part of a study and I hate I ever took that drug. > >> >> > >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Debbie, There is also either a trial about to start or started(RU486) at Brigham and Women's in Boston,which is a Harvard teaching hospital.You contact Louise Greenberg at LGREENBERG@... or their website is http://www.fibroids.net/html/frameset.htm.The doctor in cahrge,I believe is . Best, Bonnie maryl38230@... wrote: > In a message dated 01-01-23 09:27:54 EST, you write: > > << , Do you know how I can find out if there is a clinical drug > study for the RU-486 in my area? (VA) I have checked the Center > Watch Clinical Trial listings but did not find any. Thanks for any > info. Debbie (can anyone tell me what " wrap words " means on the > reply page? Thanks > >> > > Hi Debbie, > > No, I'm afraid I don't. I only stumbled onto knowledge of the one I'm in (at > the University of Rochester) because I saw something on the local news last > spring about their first trial. I posted a question here at the time about > it, and Heleen LeRoux at Rochester contacted me with more information. > > Sorry, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Debbie, There is also either a trial about to start or started(RU486) at Brigham and Women's in Boston,which is a Harvard teaching hospital.You contact Louise Greenberg at LGREENBERG@... or their website is http://www.fibroids.net/html/frameset.htm.The doctor in cahrge,I believe is . Best, Bonnie maryl38230@... wrote: > In a message dated 01-01-23 09:27:54 EST, you write: > > << , Do you know how I can find out if there is a clinical drug > study for the RU-486 in my area? (VA) I have checked the Center > Watch Clinical Trial listings but did not find any. Thanks for any > info. Debbie (can anyone tell me what " wrap words " means on the > reply page? Thanks > >> > > Hi Debbie, > > No, I'm afraid I don't. I only stumbled onto knowledge of the one I'm in (at > the University of Rochester) because I saw something on the local news last > spring about their first trial. I posted a question here at the time about > it, and Heleen LeRoux at Rochester contacted me with more information. > > Sorry, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 , You did not get confused I did.Now,would you be so kind,and tell me what study are you in? Also what were your symptoms etc.I do not think I can get into a study since I have been told I need a 3 month " wash-out " from the progesterone and that would scare the pants off me.Were you told whether or not RU486 would need to be taken all the time as in Lupron or that you would, or may, get a permanent shrinkage?I am now guessing you're in the Rochester study,am I right? Heleen is pretty great.I hope she is listening. Best, Bonnie P.S. Interesting don't you think,one study to protect against progesterone,others,like me taking it maryl38230@... wrote: > In a message dated 01-01-23 18:13:33 EST, you write: > > << Hi , > Are things getting confused?I'm on progesterone,is that what you mean,or > RU486 and our common > friend is the great Heleen? > Please answer back and set me straight,I'm peri-menopausal and I can have a > partially fried brain > at times > Bonnie > >> > Hi Bonnie, > > I guess I got confused. I'm on RU-486, the anti-progesterone. But I did mean > the great Heleen. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 , You did not get confused I did.Now,would you be so kind,and tell me what study are you in? Also what were your symptoms etc.I do not think I can get into a study since I have been told I need a 3 month " wash-out " from the progesterone and that would scare the pants off me.Were you told whether or not RU486 would need to be taken all the time as in Lupron or that you would, or may, get a permanent shrinkage?I am now guessing you're in the Rochester study,am I right? Heleen is pretty great.I hope she is listening. Best, Bonnie P.S. Interesting don't you think,one study to protect against progesterone,others,like me taking it maryl38230@... wrote: > In a message dated 01-01-23 18:13:33 EST, you write: > > << Hi , > Are things getting confused?I'm on progesterone,is that what you mean,or > RU486 and our common > friend is the great Heleen? > Please answer back and set me straight,I'm peri-menopausal and I can have a > partially fried brain > at times > Bonnie > >> > Hi Bonnie, > > I guess I got confused. I'm on RU-486, the anti-progesterone. But I did mean > the great Heleen. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 Hi Sydney, The China study examined the response of fibroids to two different daily dosages. It was a prospective nonrandomized clinical trial: 28 study participant got 10 mg daily and 15 got 20 mg daily for 12 weeks. Both groups became amenorrheic,low abdominal pain disappeared and for all symptoms and signs of anemia were resolved. The fibroid volume decreased to 41.4% of baseline in the 10 mg daily group and 43.% in the 20 mg daily dose group. They concluded that the 10 mg daily dose is considered more ideal for treatment. & Bonnie - you are too kind, but thank you!! Re: hello, new to group >> >> >Date: Tue, 23 Jan 2001 07:59:34 -0800 >> >> > >> >> ><< smime.p7s >> >> >> >> >> _________________________________________________________________ >> >> >> Get your FREE download of MSN Explorer at http://explorer.msn.com >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 Heleen: Thanks, that's very interesting. Did they do any follow up after the study to see if they grew back and how fast? Sydney At 08:46 AM 1/24/01 -0500, you wrote: >Hi Sydney, > >The China study examined the response of fibroids to two different daily >dosages. It was a prospective nonrandomized clinical trial: 28 study >participant got 10 mg daily and 15 got 20 mg daily for 12 weeks. Both >groups became amenorrheic,low abdominal pain disappeared and for all >symptoms and signs of anemia were resolved. The fibroid volume decreased to >41.4% of baseline in the 10 mg daily group and 43.% in the 20 mg daily dose >group. They concluded that the 10 mg daily dose is considered more ideal >for treatment. > > & Bonnie - you are too kind, but thank you!! > > Re: hello, new to group > >> >> >Date: Tue, 23 Jan 2001 07:59:34 -0800 > >> >> > > >> >> ><< smime.p7s >> > >> >> > >> >> _________________________________________________________________ > >> > >> >> Get your FREE download of MSN Explorer at http://explorer.msn.com > >> > >> >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 Heleen: Thanks, that's very interesting. Did they do any follow up after the study to see if they grew back and how fast? Sydney At 08:46 AM 1/24/01 -0500, you wrote: >Hi Sydney, > >The China study examined the response of fibroids to two different daily >dosages. It was a prospective nonrandomized clinical trial: 28 study >participant got 10 mg daily and 15 got 20 mg daily for 12 weeks. Both >groups became amenorrheic,low abdominal pain disappeared and for all >symptoms and signs of anemia were resolved. The fibroid volume decreased to >41.4% of baseline in the 10 mg daily group and 43.% in the 20 mg daily dose >group. They concluded that the 10 mg daily dose is considered more ideal >for treatment. > > & Bonnie - you are too kind, but thank you!! > > Re: hello, new to group > >> >> >Date: Tue, 23 Jan 2001 07:59:34 -0800 > >> >> > > >> >> ><< smime.p7s >> > >> >> > >> >> _________________________________________________________________ > >> > >> >> Get your FREE download of MSN Explorer at http://explorer.msn.com > >> > >> >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 No, as far as we know they did not. We did follow the people in our pilot study for 4 months post-treatment and the mean uterine volume at this time was 80%, still significantly different from baseline. But it was a small sample (12 women)and we need more research - some subjects returned to baseline or greater levels and others showed little regrowth. Re: hello, new to group > >> >> >Date: Tue, 23 Jan 2001 07:59:34 -0800 > >> >> > > >> >> ><< smime.p7s >> > >> >> > >> >> _________________________________________________________________ > >> > >> >> Get your FREE download of MSN Explorer at http://explorer.msn.com > >> > >> >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 No, as far as we know they did not. We did follow the people in our pilot study for 4 months post-treatment and the mean uterine volume at this time was 80%, still significantly different from baseline. But it was a small sample (12 women)and we need more research - some subjects returned to baseline or greater levels and others showed little regrowth. Re: hello, new to group > >> >> >Date: Tue, 23 Jan 2001 07:59:34 -0800 > >> >> > > >> >> ><< smime.p7s >> > >> >> > >> >> _________________________________________________________________ > >> > >> >> Get your FREE download of MSN Explorer at http://explorer.msn.com > >> > >> >> > >> >> Quote Link to comment Share on other sites More sharing options...
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