I didn't really want to post this today but someone has got my back up...... as usual it's about the great Tamoxifen debate it was over this very same subject that I left the BCC forum as discussions turned into heated arguments and then just plain old nastiness. Tamoxifen strikes again it would appear, now I'm not a horrible bitch and until this shit happened to me I never complained ever to explain, I joined the FB chat group because things were getting out of hand and nasty on the BCC forum, the chat group I found was brilliant and in the beginning only a handful of us using it, it was so refreshing to be able to just say what was on your mind without having to answer, explain or justify why you said this or that. Last night I jumped on a conversation about Tamoxifen some one mentioned that her BCN had told her that Tamoxifen didn't cause Osteoporosis my reply went like this "Tamoxifen good for the bones what is your BCN on??? I mean I know we are all on drugs but seriously!! My BCN is also pretty rubbish she's nice but not great I've hardly spoken to her since all this began every time I do speak to her she just say's "Ring me whenever you want for anything at all" so I ring her and say I need to swap my prosthetic boob as I've put on weight and the good boob is much larger now, so she say's oh you have to go and see your GP who then has to write a letter and then we will make an appointment for you to come in and be examined and then you might get a new prosthetic, its this sort of unbelievable nuttiness that drives me bonkers!!!! end of rant xx love to all sarah xx" to which I got this reply "Sarah tamoxifen is good for your bones and doesnt cause osteoporosis, but AIs can cause bone degeneration. infact tamoxifen and other SERMs used in postmenopausal women actually has been found to increase bone density campared to post menopausal women who are not taking tamoxifen.... im also a BCN but if you do a search on google scholar for tamoxifen and bone density research you will find that the woman in the clinic is mistaken and the professionals are actually corrent in this instance... however thats not to say your BCNs might still be numptys. :) to which I replied " thanks for your input and with respect I don't question your knowledge about this subject especially as your a BCN, I would also like to point out that the woman in the clinic is not the only person I have spoken with who blames tamoxifen for getting osteoporosis, both women were very young when they developed it and I'm wondering if age and menopausal stage have anything to do with it? I found this information on Tamoxifen and posted it as a new document at the top if anyone is interested. For the record my BCN has not been 'there' for me through this I blame both the bureaucratic policy's she has to follow and the fact that she is massively over stretched with far too many patients." to which I got this reply its the last sentence that really annoys the fuck out of me
"you might find these useful....http://www.mhra.gov.uk/home/groups/l-unit1/documents/websiteresources/con2032892.pdf from 2007 says one brief line that tamox does not affect bone density.... and this is from the MRHA in 2012.... doesnt mention it at all.... http://www.mhra.gov.uk/home/groups/par/documents/websiteresources/con152698.pdf somebody blaming tamoxifen and tamoxifen actually being the cause are two completely different things.... people are often looking for causes but there is no evidence that support your theory just some people who may have got osteoporosis anyway or possibly even earlier had they not been on tamoxifen.... there have been hundreds of studies on this and nothing to show any relation to BMD. in letrozole and other AIs there is a know causative link.... not wanting to argue but posting a document of somebodies opinions is not the same as the hunderds of research papers indicating no link".
Well sorry for breathing saying "not wanting to argue" was in my opinion very antagonistic and put a squash on anything else I might of wanted to say and a deliberate put down and shut up kind of comment, the chat group is on Facebook it is not monitored and therefore is supposed to be a free space where we can all voice our opinions and views without any fear of repercussion this has now changed and I've left the chat group and don't want anything more to do with it.
Just to put you all in the picture since starting the dreaded Tamoxifen I have put on over 2 and a half stone according to a few doctors and nurses at the hospital Tamoxifen is not to blame but then my onc and another nurse told me it was the fucking tamoxifen so you see all the information you get is totally conflicting and I don't care what some fucking medical statistic company says about this or that I listen to real people that a) I've spoken with and b) my own research personally I believe she was only getting angry because I slated a fellow BCN colleague and I have a horrible feeling I've already had a run in with this woman on the BCC forum as her name and avatar are the same of course she could be an internet troll in which case go fuck yourself. I didn't ask for her opinion on my opinion and I was not telling somebody else what to think they can think for themselves, I have a right to my opinion and I'm sticking with it I really don't give a flying fuck what anyone else thinks, I would never pull someone else up on such a sensitive issue she has in my opinion ruined the chat group for me and for that matter for everyone else because now none of us are allowed to voice an opinion for fear of being scollded. There is no right or wrong I was only voicing a view and being open to which end I feel like I don't belong in the chat group that has supported me and in turn where I have supported others in a similar position. Its a shame because I've been quite involved with it and was doing some stuff for the SBC website. Oh well back to dealing with this shit on my own without any external support.
Thank god for my blog where I can voice whatever I want without any fears.
Anyone who I added as a friend on FB I can still communicate with and will do so by private message only, like I said its not everyone in the group just one person.
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