OSTEOPOROSIS - any advice welcome!

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21

Hi frazzledfifty(I love the name!),

Yes, it sounds as if that’s the case.
However, surely a GP must be aware that this drug can cause reduction in bone mass, look at the patient’s age (in my case, 40) and realise that an early menopause puts a woman at risk of osteoporosis, combined with the fact that they are now taking a drug that causes loss of bone mass, put 2 and 2 together and think - get the patient’s bone density measured over the course of 5 year’s treatment. That’s what we’d like to think!! I wonder how many other women slip through the net in this way? There ought to be some sort of failsafe in the system to prevent this from happening.
Oseoporosis is not a great thing to have and the implications of breaking something(in particular, a long bone) are not good.
XXXXXX

22

Hi Ladies

I was on Tamoxifen for 5 years, then 2 years on Arimidex. Whilst on Arimidex I wasn’t offered a Dexa scan at any time or calcium supplements. It wasn’t until I was suffering joint/bone pain that I was sent for one, which was fine. I was then taken off the Arimidex and the pain improved - that was two years ago.

I am now getting the aches and pains again and am going to have a CT scan and bone scan to check for mets. It maybe that it is arthritis or osteoperosis due to the Arimidex or just menopausal symptoms as my early menopause was brought on by chemo when I was 42. I feel like an old lady now aged 51. But I think that Arimidex has a terrible effect on bones and we are not being monitored whilst on it as a matter of course…

23

Hi all,

Following on from the information Anne G posted on the algorythms for bone density management in postmenopauasal women on aromatose inhibitors, I have looked up what the definitions of these scores mean. They are as follows:
World Health Organisation(WHO) definitions based on bone density in white women:-
Normal bone - T score better than -1
Osteopenia - T score between -1 and -2.5
Osteoporosis - T score less than -2.5

I think that they then work out the treatment based on bone mineral density and clinical risk factors using Fracture Risk Assessment Tool (FRAX)
Using the info that Anne G gave from the NICE guidelines, this means that treatment for post menopausal women on one of the aromatose inhibitors is as follows:(unfortunately I still cannot open the guidelines up so AnneG, please correct me if I have this wrong)

Bone density score worse than -2 (as Anne’s was) - treatment is a bisphosphonate plus calcium and vit D and further scan after 24 months
Score between -1 and -2 - treatment is as above
Score of less than -1 there is no intervention.

This is based on what Anne read in the guidelines - the link to these guidelines has been put on by Lucy and Sam.Unfortunately, for some reason, I cannot open the pdf with them in , so cannot confirm that this is 100% correct but thank you for condensing it Anne.

I do not know what my score was because I wasn’t told. However, when I found out that the scan in 2005 had shown osteopenia (18 mths after being told that the scan was normal) i was again told that I didn’t need any treatment.
However, acording to the WHO definition of osteopenia, the score would be between -1 and -2.5.Which would then mean, according to the treatment guidelines, should have been treated with calcium, vit D and a further scan after 24 months!!

I am going to contact my GP on Monday and ask for the score on my dexa scan from 2005 and the one I have just had done . It may be that it was a “borderline” osteopenia (i hope) and that meant that I didn’t need to be treated. Hmmm…

Hi surreylady, i wish you very good luck with your scans, and I pray that they will be fine. If it helps, I develpoed bad hip and back pain and was also scanned (bone and MRI) for secondaries. It was when they came back NAD that I then insited on a density scan,and thats when I was tolds it was osteoporosis.I agree with you, I think that we should all be monitored for bone density whilst on these drugs. Good luck XXXXX

24

Hi
Just one amendment - for between -1 and -2, the treatment is vit D and calcium but not a bisphosphonate.
All the best
Anne

25

Hi Anne,
Thanks for that ! Sorry, typing away without fully concentrating…
XXX

26

Hi Have been so interested in this topic.Thanks for the explanation happy shopper. Had DEXA last month when starting on Arimidex. Onc sent a copy of the report to me and a letter plus a photocopy of the scan, the latter lost on me. My femoral neck is normal but lumbar spine T score is -1.6. I am on Fosamax and Adcal D3.So I am plonk in the middle of the -1 and -2 score meaning calcium only. Think I will stick with the bisulphonate (sp)although it is a bit of a pain to take.Onc,s letter says DEXA to be repeated in ‘a year or two to ensure that your bones are monitored’.Anne I do hope you get some joy from your GP after all the BC treatment we have had thrown at us it really is not on to find that a s/e which can be alleviated or prevented should be allowed to develop. Good Luck and hope you have an enjoyable week-end Jackie

27

Hi all,
just though I would upate you all !

I rang my GP surgery this morning to see if I could find out the results of my DEXA scan. The receptionist told me that the scan I had in July/Aug 2010 showed the spine is T = -3.1. I am gutted. Osteporosis is below -2.5, and I was hoping it was going to be nearer that mark. I then asked what the scan showed from 2005 - guess what, they have no record of it. However, it is written in my notes as “Osteopenia”. It is becoming very clear to me that there has been one almighty **** up.
Now what do I do? Any advice on what to do now gratefully recieved!!!

PLEASE- anyone taking an aromatose inhibitor, check with the Dr about having bone density scans
xxxx

28

happyshopper - Sorry, can’t help with your question but going back to the NICE guidelines, couldn’t you ask one of the lovely BCC staff to e-mail you the pdf file, which you may then be able to open? Perhaps there is a corruption in the link, although it works for me. Alternatively, have you tried Googling it yourself. You could try updating your Adobe Reader or trying a fix. Sorry if you have tried all this. Not meaning to interfere :frowning:

Ann

29

Hi Anne, Thanks for your message and guess what- have managed to access it this morning! In fact, that’s what I have been doing all morning…!
Right, to start with it seems to say that those starting on an AI should have a baseline DEXA scan within 3 months of treatment- in my case, THIS WAS NOT DONE, and my previous scan in 2005 (12 months prior to starting AI) done when I had my oophorectomy, showed that I had oteopenia (but I do not know what the T score was then ).
Without knowing what the T score was at that time, it’s difficult to say exactly what path my management should have followed.
However, the WHO definition of osteopenia (based on bone density in white women) is T score between -1 and -2.5.
Therefore, if this is the case, based on that info, according to algorithm 2, my treatment path should have been calcium and vit D supplementation (I took Osteocare over the counter) and repeat BMD, if available, after 24 months of therapy.THIS WAS NOT DONE.
Then, depending on what the annual % of bone loss was (>4% at lumbar spine or hip and / or T score <2.0),would have determined whether or not I should have been treated with bisphosphonates and calcium/vitD.
Either way, the algorithm recommends repeat DEXA scan after 24 months - NOT DONE.

So here I am, with a T score now of T = -3.1 to spine (thankfully hip normal) and no idea when, over the course of 5 years, exactly when I became osteoporitic.
If these guidelines had been followed, I should have had a baseline scan in 2006 when i started treatment with a repeat scan in 2008, then 2010. So basically i have missed out on 2 scans.
Thing is, I would still be none the wiser had I not gone to my GP last month insisting that I had one due to me completing arimidex next year and being concerned as to what my density was!

Ho Hum!!!

XXXXXXX

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Glad you managed to sort it. Out of interest, what finally worked?

Ann

31

Hi Ann,

My hubbie had a fiddle with the computer last night(not sure what he did) and I tried it this morning again, not thinking I would get it open, when hey presto!
Thanks again for your help wityh this- thing is, what do i do now??!
XX

32

Hi Happy Shopper don’t want to interfere but just because your GP records do not have your earlier DEXA scan results these will be available in your hospital records was that 2005? you can request these. So sorry that you are going through all this Regards
Jackie

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Hate to say this, but weight training can not only prevent loss of bone density but also reverse the effects.

I started weight training about 4 years ago (still hate the gym with a passion!) and the difference has been amazing. My last bone scan showed that at age 61, my bone density was what would be normal for a 30 yr old. Cardio vascular exercise is great for heart, lungs and overall stamina but doesn’t do a thing for bone density. You can use machines or free weights in the gym or your own body weight or stretchy bands at home. Results are very quick - which is an added bonus! An hour twice a week is all you need and you’ll see a difference in about 4-6 weeks)

(By the way - I’m not the sporty, hearty type at all - I loathe having to exercise, hate walking anywhere, never learned to swim or ride a bike but have reluctantly accepted that my twice weekly visits are proving effective in keeping osteoporosis at bay and combatting the s/e of aromatase inhibitors)

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Hi Jackie,
thanks for your advice - I am sure that there will be some record of it in my notes - hope so! There must be something for them to put osteopenia in my notes though?
Thing is, what do i do? I am planning to write to my practice and ask for copies of my scan reports, with particular reference to my T score.I will then be able to see what it was to start with and just how it’s deteriorated. then, do I take it further? I know that it may well not have been prevented. But it could have been monitored, so that I would have known when it was deteriorating and began treatment when required. I don’t know when my bone loss worsened unfortunately - somewhere over the course of 5 years.
Hi Jenh,
Thanks for the advice on weight training- I have been on the internet looking at ways /exercises I can do for myself. Thing is, I walk every day with the dogs and do weight training and body pump already at the gym (and over the past 5 years too)- obviously not doing enough!! I will certainly be upping the ante though!!
this is another moan though- when the doctor was telling me over the phone that I had osteoporosis and advising me about the medication I now needed there was no mention of how I can improve BMD etc- nothing! No basic health promotion whatsoever !
I just think that the whole management of these things is sometimes so slap dash and could be so much better- I hope other’s experiences are more positive but some of the messages on here seem to indicate that perhaps they are not.
It doesn’t take much to go through some basic health promotion instead of the attitude “here’s the tablets, off you go, I’ve done my bit”.
Don’t I moan…!!!
Bitter? Maybe just a little…!!!

Thank you ladies for all your wonderful support XXXXX

35

Have a good moan happy shopper! I’d be really cross in your position too. And it makes me feel better that I’m not the only one who is moaning about things that have made me really fed up with the medical profession!

Doesn’t make me feel any better that there are so many moans from so many place tho - was hoping my onc was a one off!!

36

Hi all,
thanks jenh, did feel better after moan!

now I have another moan !!! I contacted the practice manager to ask what their policies were on the monitoring of bone density in patients who are taking an AI. She didn’t have a clue what I was talikng about,said that she is “admin”, and would get the Dr to phone me.
The doctor didn’t phone me, but today i got a letter from the practice manager:-

“I apologise for not returning your call following our conversation but I was busy with a practice meeting. However, I did speak to Dr X regarding your enquiry.
As a surgery we do not have a monitoring policy for regular scanning of bone density. this is not a requirement that is recognised nationally within primary care. As a practice we continue to prescribe medication initiated by consultants and we work together with them to ensure ongoing treatment.
I hope this clarifies our position. If you would like to discuss this further or have any other queries please contact me.”

So, basically get stuffed!! Comments on this would be extreemly gratefully recieved! Especially if you are regularly scanned/have not been scanned for bone density loss whilst on an AI.
Thank you! XXXX

37

Hi

I started Femara in June had DEXA scan July and was told showed osteopenia so had to start AdcalD3. GP said I had to have another scan in 12 months time. He said to put date in my diary and remind them about it. Onc told me before starting Femara that it is standard practice for everyone to have bone density scan.

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I really think this depends on whose budget the expensive DEXA scan lands on. My GP told me I would have to pay for it my Onc said they would refer me at intervals. Jackie

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could I just pop in here. I am just over half way through my chemo, well, will be tomorrow. I am taking part in something called the B-ahead study based at the Genesis in Manchester. part of my induction was a bone density scan. this showed below average (-2.2)and was refered for a DXA scan. I went to my GP this morning for the results. I have osteoporosis in the top of my spine and osteoplenia in my lumber spine and his answer to this was biosulphates and calcium supplemnts, I aked if he could tell me my score, he printed some thing off bur when I left the surgery realised it was the results of my first scan not my second so I am none the wiser. he was also anxious to be rid of me as I had gone “into the next patients time”
Carol

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Hi Carol if you can get hold of your 2nd results I found he National Osteoporosis help line really helpful in helping me with the results. But my Onc had sent me a copy anyway ( I signed up to get copies of all the letters sent to my GP) but this one came to me with my GP copied in. Sorry to here your experience was not as good as it might have been.Good Luck with chemo tomorrow Jackiexx