Guest guest Posted April 25, 2009 Report Share Posted April 25, 2009 Hi Newbloggerkc, Welcome to the group. Women have been complaining about this since the early days of Gleevec, myself included. I even emailed one of the top CML doctors to ask why research wasn't being done regarding Gleevec's effect on hormones and was told that it's because there's no evidence to suggest that there is any effect. Duh! Tell that to all the women who are having serious hormonal imbalances. For me personally, I had prolactin levels high enough to be pregnant or lactating (which I wasn't) and was still told that it can't be Gleevec even though all other possible causes were investigated and found to be negative. The only conclusion I can come to is that all the top doctors are male and don't care about our " menial " hormonal complaints. You can be sure though that if the men on Gleevec suddenly became impotent, they'd start to investigate!! Tracey dx Jan 2002 > > > > > > > From: Tammy Ferns <tammy@> > > > > Subject: RE: [ ] Novartis Advisory Board- Tasigna/Gleevec > > > > > > > > Date: Tuesday, March 17, 2009, 9:06 PM > > > > I would like an easy to read " What your doctor should > > > > be telling you. " Or > > > > " You have CML... How to know if your doctor really > > > > knows what they are > > > > talking about. " > > > > > > > > > > > > > > > > I guess I'm saying... as a patient you are dumped into > > > > a world of complete > > > > unknown... trusting that the onocologist that your primary > > > > doctor sent you > > > > to is full of knowledge and complete understanding. It > > > > would have been nice > > > > to know that there are different specialties in onocology. > > > > > > > > Also, include the terms and definitions of CML. > > > > And a sample CBC lab results with more detailed info. > > > > > > > > This is what popped into my head when reading your inquiry. > > > > It seems like... > > > > you find out you have CML and within hours you are thrust > > > > into a world of > > > > medicines and " saving your life " . Knowing that > > > > you have a good doctor would > > > > have been cool. > > > > > > > > Tammy > > > > > > > > > > > > > > > > _____ > > > > > > > > From: [mailto: ] On > > > > Behalf Of Barb > > > > Stanley > > > > Sent: Tuesday, March 17, 2009 10:57 PM > > > > > > > > Subject: [ ] Novartis Advisory Board- Tasigna/Gleevec > > > > > > > > > > > > > > > > Hello dear CML survivors > > > > I was called last Friday for a 45 minute interview from > > > > Novartis for the > > > > Patient Advisory board April 24,25,26 in Houston. Evidently > > > > the interview > > > > went well. They notified me today I was chosen. Since it is > > > > now real, I > > > > would love as many questions and suggestions that you may > > > > have on what kind > > > > of education you would have liked, on gleevec or on tasigna > > > > before or when > > > > you began. I want to represent you as well as I can and > > > > plan a report back > > > > to you when I return. So far, I have 2 pages of questions. > > > > I also found out my name was submitted from my oncologist > > > > for this. I > > > > wondered how that happened. The info I recieved today > > > > indicates that > > > > Novartis wants to know what kind of patient education would > > > > be helpful. > > > > > > > > I have said from the beginning, it makes no sense for me to > > > > have cancer > > > > unless it brings enlightenmemt, knowledge and power to > > > > people. Please feel > > > > free to email me privately, to let me know what I should > > > > bring with me to > > > > represent you best. I plan a report to all when I return. > > > > Blessings my good survivors, > > > > Barb > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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