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Keep ranting! you are being observed

6 REPLIES 6
hazelmary
Member

Re: Keep ranting! you are being observed

Very interested to read this link. I would be in cat 1 with primaryBC and on an AI after 5 years of Tamoxifen. Was going to be 3 years of Letrozole now Onc says 5 which I have found confusing but nevermind.
I hope to stay on Letrozole for the 5 years, I never once considered coming off Tamoxifen but I am having problems with this drug, I just wish my Onc would just say " Yes Hazel, there are some pretty horrible side effects including aching etc etc but it is worth persisting with the drug" But he doesn't say that, he just thinks I'm moaning and pretends that he isn't aware of any SEs.
I too would like to see this investigation ging a bit further.

Leah_BCC
Member

Re: Keep ranting! you are being observed

Thanks for posting the link vercors. Really interesting to see message boards becoming a source of research analysis.

broomsticklady
Member

Re: Keep ranting! you are being observed

As someone who sailed thru 5 years of tamoxifen when pre menopausal as part of the IBIS trial to see if it was worth being used as a preventative for those at high risk pre cancer developing, I agree with Mrs Blue's question - if you can do such a thing?!
I think the secondary ladies are possibly more motivated to cling on to anything and perhaqps put up with more as we have a limited number of options before us and are fighting a definite - those in category 1 are trying to prevent a possibilty, which is a very different mental state to be in.
I sincerely doubt any reasearch is done - they don't even know how many of us secondary ladies there are out there!

Please ladies - don't let this thread deteriorate into a primary v secondary tho - I see potential for that - hope I'm just being pessimistic - it is a valid question Mrs B is asking.

mrsblue
Member

Re: Keep ranting! you are being observed

Interesting indeed. I had a quick glance and was thinking of sending my BCN the link...
... but it's important to say that the subject of hormonal therapies is often confused because people forget that breast cancer patients take these drugs for one of two reasons:
Either (a) after treatment for primary bc (surgery, radiotherapy and/or chemo) to prevent, or to reduce risk of. the cancer recurring.
Or (b) those such as myself who have secondary bc, to control the cancer which is not usually curable.
Both groups of patients may experience side effects from hormonal therapies.
I would be interested to know if there is any research on whether women in group (b) are more likely to continue taking these drugs than those in group (a).
Alto
Member

Re: Keep ranting! you are being observed

Yes, very interesting article. I's like to know what an analysis of the forum posts about Taxotere would reveal!

Jane xxx
nannabarb
Member

Re: Keep ranting! you are being observed

Very interesting Vercors, I wish the medical profession this side of the pond would do something similar, instead of telling us the SE's that we know LOADS of us suffer from, such as lack of hair regrowth, are 'extremely rare'.....
vercors
Member

Keep ranting! you are being observed

Interesting article about mining forums to get a better feel of side effects
http://www.hopkinsbreastcenter.org/artemis/201302/27.html