Hi Anthi
Here’s a link to the BCC publication ‘Breast cancer treatments and the risk of osteoporosis’ which you may find of interest:
www2.breastcancercare.org.uk/publications/treatment-side-effects/osteoporosis-breast-cancer-bcc75
Best wishes
Lucy
Many thanks Alice and Lucy
Alice - the DEXA scan I had at the beginning of November says:
Spine (L1 - L4) T score -2.3. Z score -0.5 and is classified as osteopenia
Femoral neck T score -1.0. Z score 0.5 and is classified as normal
Yes - you are right, it is only the orthopaedic surgeon who said I definitely have osteoporosis. He also said that osteopenia is ‘the same thing’ as osteoporosis. I had always understood osteopenia to be not as severe as full blown osteoporosis.
Many thanks for your advice
Anthi x
Hi Anthi,
First, I am really pleased to hear that after a year on the alendronic acid things have improved!
From what I’ve been told, you don’t have osteoporosis and osteopenia is not the same.
My dexa scan showed T scores of -1.1 at spine and -1.2 at hip, both osteopenia. I was also told that with the alendronic acid, there was a good chance of getting back to normal bone density in spite of the Aromasin for another two and a half years, but that alendronic acid is a long term thing and it would be a year before any improvement was seen. I’d need to take it the whole time I was on Aromasin to regain normal density. That seems to fit with the improvement you’ve had - which is why I find that encouraging. I was also told that they wouldn’t give bisphosphonates for osteopenia if someone wasn’t also on an aromatase inhibitor, but only if the T scores went down to osteoporosis level.
It is so difficult when we’re told conflicting things! From what I was told, it sounds like if you continue with Aromasin and alendronic acid you could get back to normal density if I can because your osteopenia is more mild than mine. I have my regular check up with my surgeon this afternoon so I might check this again. I’m not due to have another dexa scan for another year or two.
Eliza xx
Eliza xx
Hello Eliza and thank you for your message. Good luck with your checkup this afternoon.
The info about osteoporosis /osteopenia is really helpful as it’s an area I know very little about. Silly question coming up : they test our hip and spine (which give different results from each other) but what about other parts of the skeleton? Can we assume that they are in a similar condition? I’m asking because of course I broke my humerus.
By the way - Alice - I usually walk 3 or 4 miles a day, but I don’t imagine that does much to strengthen my arms, so your suggestion to do some bone stressing exercise is good, as is your suggestion to think about my risk of falling. Thank you.
Take care everyone. Anthi x
First I’ll make it clear I don’t know if your drug treatment will weaken certain bones more than others - DEXA scans are traditionally done on hip and spine because those cause most problems in terms of elderly osteoporosis and there is a raft of data now so they would not do other areas. (Having said that heel scanners are cheap and sometimes used to screen people to work out who mught benefit from DEXA).
Your surgeon may have said osteoporosis from what he saw of the quality of your broken bone. The definition is more specific, based on the DEXA scan, but osteoporosis is a bit like blood pressure in that we arbitrarily come up with a number and give that the definition. It is not like say, BC where you either have it or you don’t. Osteopenia is bone density a bit worse than “average” (score less than 0 and greater than -1) so not normally treated. Osteoporosis is score less than -1 and depending on various other factors is often treated.
But when it comes to preventing drug induced osteoporosis the situation is less clear cut because the knowledge of how well the treatment works is less clear - the doctors are making judgement calls. Back to your humerus - it may have been in a worse state than your hip or spine - sometimes even those two can vary in one individual. Also the treatments can have better/worse outcomes for the hip or spine - but alendronate does help with elderly osteoporotic hip fractures and to be honest hips are a bigger problem than the spine (you may disagree if it happens to you - but spines tend to hurt for a while then fuse, fractured hips in the elderly are a major cause of death in the subsequent year).
Obviously totally up to you whatever decisions you make, but for me, if I were offered alendronate and exemestane having had a broken arm with minimal cause(my assumption on your fall) then I would take the two having reminded myself of the potential alendronate side effects to watch out for.(sound like a lawyer now!)
Sue
Hello again Alice/Sue and thank you for another very helpful, informative reply.
Take care
Anthi x
Thanks, Anthi. All went well and I’m safely into another year.
They are still quite encouraging about the possibility of me regaining normal bone density, but then they want me to keep taking the stuff! Also my osteopenia isn’t drug induced because it showed up on my initial scan that was about a month after I switched to Aromasin.
I think that they measure at spine and hip because they are the most relevant spots for most people, but that isn’t so useful for you, of course. As I understand it, the heel scanners don’t give as great accuracy as the DEXA.
Incidentally, I seem to have settled into the generic stuff now.
Eliza xx
Hello Eliza and thanks for your message.
Good to hear that your checkup went well. It’s encouraging too that they hope you will regain normal bone density.
Take care
Anthi xx
by the way everyone, belated apologies for hijacking this thread with a discussion about my bones !
Anthi xx
No problem Anthi. It’s all relevant information. I’ve found it very interesting to read although my base DEXA was OK.
Once or twice I’ve considered giving up on hormone therapy, not because of osteoporosis but other side effects which I find diffiuclt, mainly headaches and migraine. I’ve not got just under a year to do and I’m counting off the weeks. I’m trying not to get too excited in case I tempt fate!!!
I hope you are OK. It’s nice to see you posting again and sounding so perky after all you’ve had to cope with. I like the sound of letting someone else cope with Christmas but not because of a broken arm.
Love Jan
Hi All - Just thought some reading this thread might be interested to know that having now had different generic exemestanes prescribed each month for the last few months and not doing too well with joint side effects at all (which HAD settled down after a while on Aromasin), my GP has switched me back to branded Aromasin. We’ll see! Feels a bit like the generics have not been fully tested with their slightly different ingredients… But that’s not to say those starting out on them wont benefit - just that since side effects take a while to settle, it can be a nightmare having to go through that settling process over and over! Knowing my luck - I’ll probably have to go through it all again even WITH a return to the branded version!
Hi Haxted
Thanks for the info. I’m going to see my GP on Friday and I think I’ll be asking if I can go back to Aromasin. I’m ok now on the Actavis Exemestane after some initial probs but my next lot are Teva and I’m getting anxious about having to start all over again. I may be OK but it doesn’t stop me worrying about it.
I hope you are OK when you start taking Aromasin again.
Let us know. Keep in touch.
Jan
Hello everyone and Happy New Year.
Yes, that’s the trouble with generics - one seems to be given a different brand every time. I’m now settled back onto the branded Aromasin and feeling much better for it. Good luck when you see your GP Jan. Let us know what happens.
Haxted, hope you don’t have any problems when you go back on the branded one.
Take care everyone.
Anthi x
Hi Anthi
Happy New Year to you too. How’s your arm? When is it you go back to the hospital?
Thanks for your good wishes. My GP is pretty good but my BCN told me that the doctor can’t refuse if you ask for a different brand of the same medication. This happened when I was on generic Tamox which didn’t suit me at all and my BCN told me to ask for Nolvadex D which has sadly been discontinued now. I saw another GP who was loathed to prescribe it, she said her job was to save money for the NHS!!! I stuck out for it and she gave it me on a 3 month trial. It was good and so I stayed on it. I would have backed down though if my BCN hadn’t given me such good advice.
All the best to you. I’ll let you know what happens on Friday.
J xxx
hello everyone, happy new year to you all, i have been very fortunate my gp/chemist has not changed my meds and am still been given aromasin, still get fed up with SE s but never mind as long as it does the trick in keeping BC away, Hope your arm is healing well now Anthi.
Annie x
Hello Jan and Annie and thanks for your messages.
I’m still wearing a sling but have an appointment for an x-ray and to see the Dr this Wednesday. I’ll let you know what happens.
Take care
Anthi x
Good luck for Wednesday Anthi. x
Thanks Jan
Anthi x
Hi Anthi
Hope your appt went well.
Jan xx
Sorry Im new to this site. I have been on exemestane for 3 month and my joints are really painful. I don’t know enough about the drugs except for the side effect leaflet that came with them. i like to exercise and its stopping me from doing that to. My onchologists has said to either take painkillers or go back on tamoxifen. I am worried I wouldn’t get the increased benefits exemestane has to offer and may be giving up on it too easily. Can anyone shed any light on the drug please.
Wendiewoo