Osteoporosis

Hi Elizabeth,

Thank you for reporting and commenting! Perfect...

For your information I have removed the post and blocked the user from spamming

Daina

Hi Catherine I have been  on a clinical trial involiving fosamax to see how it worked  in combination with Arimdex, my trial with fosamax was for 3 years  ther were a some for 3 years others 5 years . however  in my case my bone density done last July 2012 was greater than when I started although I am still on the trial  I do not take  fosmax now but am still on the trial and will be monited until the trial finishes this year.      I don't know of trials happenig however I would speach to my onocolgy Doctor because trials are happening all the time also look up Clinical Trials  they are usualy have lots of information  on line    Hope I have been helpful, and I wish  you  all the best.    Regards     MARGARET

Hello ladies I am after some advice/help.

I was diagnosed with TNBC stage 3 in 2011 underwent surgery R) mastectomy then chemo treatment. I then was found to be BRAC 1 positive, hence I underwent prophylactic surgery in  L)mastectomy and hysterectomy with removal of ovaries.

I have recently had bone density to be informed I have osteoporosis but do not qualify for PBS on the recommended treatment due to the fact I am under 70 and have not had a fractured bone. I can receive FOSAMAX medication if I pay the full amount.

 I am asking if you know whether the trial is still running and if so where and what requirements do you need to qualify? or if you know of any way to get this drug cheaper or who I lobby to in the government to get this changed.

Thank you for your help

Hi Lizzy, I am still on my clinical trial and still have 2years to go, I am very well and side effects are a thing of the past, at my last  Dexa scan however this signs of Osteoporis so I am having another scan next month if however  there is further bone loss I may have the injection that you are having, The trial was going so well, however osteoporois is part of the aging process , so it could have happened anyway,Sorry to hear about your brother  and I hope you are keeping well,       regards Margaret

Hi, I'm replying to Margaret's post just now, 18 months late, but I can't say whether or not I was notified about it at the time as my brother was in endstage with a brain tumour back in Oct 2010, and it's possible that I simply didn't find it in all the email messages I was dealing with back then. So sorry Margaret.  I would definitely have kept in touch if I'd read it as I live alone too and know how hard that can be when you are not well.

By now your trial is probably over - or not?  My trial of just vitamins is - and the jury has returned with the verdict 'not good enough'.  My latest dexa scan showed increased loss of density to the degree where my GP was very keen to see me on a biphosphorate.  I'd just had an injury in the garden and saw how easily it could have been a break so humbly agreed, and we settled on Prolia injections 6 monthly - because I have stomache problems.  I hate having to do this because of the risk of necrotic bone disease after dental surgery (I have lots of dental problems) but like most of the women here, it is a choice between unpleasant alternatives.  Because I had an early hysterectomy, my bone situation is probably more serious than some of you will be, though. And I was a  bit naughty ignoring doctor's advice, wanting to do it my own way etc.  The injections are worth looking into if anyone else has stomache problems on a biphosphorate, like Fosamax (?)

Now I'll look you up on you personal blog, Margaret, to see how youre doing. Cheers, Lizzy

I have been taking Tamoxifen since 2008 and have just switched to Arimidex as I am now post-menopausal.  I am not having an easy transition.... the nausea is a problem but I am having abdominal pain too. Can anyone relate to this?  Will these side-effects settle down?

Hi Lizzie    thank you for your reply about osteoporsis, and fosamax like you I am warry of drugs however as I have had 3 fractures in my leg going on a clinical trial  was  the right way to go for me , as I have to take arimidex, and so far so good I also take vitamin D and calcium, and try to get out in the garden for a hour to catch the sunlight,  my bone density has increased, which is promising,  however its early days and I still have a long way to go before this trial finishes, so will hope everything goes o.k. if it works it will have been worthwhile, please keep me posted as to how you go, I would like to keep in contact with as I live on my own as well.                                       Regards Margaret

I too was diagnosed with osteoporosis after a very short time on Arimidex - probably had low density before I began taking it.   But with the help of a good GP I have decided not to take Fosamax due to some of its potentially devastating long term effects.  (I don't know if you have been made aware of these)  So I have simply upped my intake of  Vit D, Calcium, Magnesium, Boron and other minerals.  Some doctors believe this is just a good a way to go; so I will ask my oncologist to order another DEXA scan when I see him in a month in order to report back to you all.  We'll see if my density levels are up or not after 3 1/2 years of this protocol.  Hopefully this will provide some  choice for women who don't want to or can't take Fosamax.  

Cheers Lizzy

Hi Margaret,

Fosamax is the tablet i have just received a 3 month supply of, so I will keep you updated on how it goes, this was supplied to me by the manufacturers of Arimidex. thank you for taking part in the trials, and i am so glad to see it is helping you, Thats another good thing about this site, there are people doing trials, and through here, like you we learn how things are going with them, so well done and thank you for getting in touch with me  The doc did say i was a bit young for my bones to be so thin, so her's hoping the magic pill will work.

Hi Moira, Just read your post, like you I have osteoporis, but am much older,  after surgery and radiation, I had to go on arimidex, however I was asked to join a clinical trial, the purpose of the study is to evalute the use of an oral bisphosphonate(fosamax) in preventing bone loss inpostmenopausal women with early breast cancer, the last bone density showed and increase in bone density the trial lasts for 5 years,and I am into my second year, I have blood tests every 3 months urine testing every six months, plus the usual visits to my surgeon and mamagrams , every thing is fine at the moment and I am due to see the Professor next week,  at the beginning I had side effects however they settled down, I was happy to go on the trial as they are very necessary, and lets hope it will help. hope to see you around the network take care                  Regard Margaret