Not sure if I’m in the right topic, but any info would be much appreciated. I have just had results of bone scan which says I have osteoporosis in my spine, as I have been on tamoxifen for almost 5 years assume it’s early menopause that’s caused it. Onc has suggested once weekly alendronic acid tablet, but having read up on side effects (I know they have to cover everything) it seems even more scary than tamoxifen. 5 yrs of tamoxifen due to finish in Dec and was really looking forward to this and am now depressed at perhaps having to continue with medications. Has anyone else been diagnosed with osteoporosis and had to take alendronic acid?
Hi Fran
I take alendronic acid and can’t say I have had any side effects at all.The only pain is you have to take it first thing in the morning with a full glass of water on an empty stomach and you must stand up or sit up for at least half an hour afterwards. I also take 2 calcichew each day. I have taken these tablets for about 9 months now.
I finished my 5 years of Tamoxifen in June and have now gone onto Femara (letrozole). I have quite a bit of joint pain but am starting to get used to it.
I have a strong family history of osteoporosis so I am not sure if Tamoxifen is to blame as I thought it actually helped your bones. I know the AI’s like Femara can effect your bones.
I have developed gallstones and understand that 39% of people who take tamoxifen get gallstones compared to 2% who have not taken tamoxifen.
Don’t be afraid to try the alendronic acid, I haven’t found it at all scary.
Good luck & Best Wishes
Linda
Good luck if you take the bisphosphonates, Fran.
It can disagree with you terribly. My Mum had terrible reaction which lasted for over 2 months after taking a single dose. It was alendronate and she has been left with a permanent worsening of her heart function which caused a prolonged crisis and for which she requires heart medication for the rest of her life. Bisphosphonates stay in your bones for years after you stop taking them, according to this doctor’s report: raysahelian.com/bisphosphonate.html
There is also a massive campaign for their use, including a suggestion that every person over the age of 50 who has a fracture should have a DEXA scan - presumably driven by the manufacturers who are hoping to prescribe lifelong prophylactic and maintenance regimes of bisphosphonates for conditions which can also be treated by altering ones diet and lifestyle. OK, if the choices are clearly laid before people to chose between taking sometimes dangerous drugs and changing their habits. Bisphosphonates have not been in clinical use for very long, are still being intensively trialled and their long term effects are still unknown.
For this and other reasons, I don’t want to touch the stuff, frankly, though I know it may be “the right thing to do” one of these days, if safer formulations can be devised, for its suggested anti-tumour effect - and I’m living with bone secondaries, but still don’t think it’s wise, for me, anyway. We are each different.
As Linda says, Tamoxifen will have strengthened your bones somewhat so the osteoporosis will have been a condition creeping up on you in the last few years.
Meanwhile, you have time to decide whether to take bisphosphonates. You don’t have to rush into this. It may be considered current clinical best practice for those who have advanced cancer. This is not your case. Nor does clinical practice in UK consider or advocate lifestyle and dietary changes beyond eating 9 portions of fruit and veg a day and getting more exercise, though that’s a starting point for sure but not the whole story.
I suggest before you make any decisions that you read the book “Osteoporosis, understand, prevent and overcome” by Prof. Jane Plant. (get it very cheaply from Amazon) It may help you to understand how your bones have started to loss their strength and what else you can do about it, apart from taking medication. She is very much in favour of a complementary approach to medecine, to do what you can for yourself and to accept conventional medical treatments as necessary and obviously in some circumstances, the other way around! There are, of course, lots of books about osteoporosis but Jane Plant came to her conclusions informed by her knowledge of breast cancer, gained the hard way - by being a survivor herself.
Wishing you well,
Jenny
I, my Mum and my Aunt all have osteoporosis and all take alendronic acid once a week, and none of us have any problems with it.
Scans done 4 years ago (age 52) showed that my bones had thinned enough for me to be diagnosed with osteoporosis, despite having been on HRT ASAP after menopause, getting lots of exercise, large intake of milk, etc. This was years before my cancer. I know that the alendronic acid is working because scans taken a couple of years later showed improved bone density, and I’ve had no broken bones despite a tendency to falling (no particular reason, I just rush around and don’t look where I’m going).
I’m now on Arimidex, so I expect to be taking the alendronic acid indefinitely and am quite happy about that, as it has no side effects that I’m aware of.
My Grandmother broke both hips and spent the last 20 years of her life in a wheelchair in a nursing home. Both my Mum and Aunt had broken bones (compacted vertabrae) before being put on alendronic acid. They both suffer pain (in my aunt’s case most of the time) which blights their lives.
No medication is without risk, but osteoporosis can be a nasty, debilitating disease.