Louise - you have given me a shred of hope re my hair: only another 3 years 10 months to go and then I might have some more on top!
Hi I think that because Arimidex is that old that few women have been taking it for full 5 years yet. I have severe hips pain in both and am getting concerned bout bone density but it may also be gae related. Recently my sister was found to be osteopenic in one hip and she’s not taken these drugs but I now read that families can be prone to osteporosis so that coupled with the risk from our drugs isn’t happy reading. I’d be interested to know too if aches and pains persist at the end of 5 years. Obviously if bones thin then they won’r recover but do joints just ache or do they get damaged? Iwill ask at my next oncological check. Just something else to age us a bit more rapidly! Oldie
Oldie
I shall be interested to know what your oncologist thinks. I am on Letrozole and although my first bone density scan was ok, I asked my GP if I could take calcium (Adcal-D3) as my Mum had bone problems.
Ann x
I have just started on Arimidex, and today asked my GP for a baseline bone density scan. He said he didn’t see why (!).
I haven’t been offered one by the breast care unit (Milton Keynes). I am 62 and want my bone density monitored. Is this a postcode lottery thing? Can I insist?
Chris
Hi Chris
I would definitely push for it for your own peace of mind as much as anything else. It’s seems that Arimidex affects bones and joints more than Tamoxifen, our bones deteriorate anyway as we age, so it makes total sense to me to keep an eye on it. You don’t want to find out your bones are suffering by fracturing something!
Don’t know whether it varies between trusts - it shouldn’t. Mine was done privately.
River
I’m in Notts. 51 years old, had a bone density scan two weeks ago, don’t start rads until 1st march, and arimidex towards the end of that treatment…I do think you should get a bone scan or else how do they know if you have a problem?
Thanks River and Tally. I’m interested in your scan, Tally – did you have previous bone issues or is this a baseline scan?
Hi all,
I’d just like to pop in here as well, I’m been on arimidex since last march after I had my 1st opp, Had lots of hot sweats nd flushes, and aching bones, but they do seen to be dying down now and bones not as painful but have got Dicloflex off the dr, which I find very good.
But I did have to ask for a bone density scan, I asked why I wasn’t offered one, said because I’m a larger lady and hadn’t had any broken or aching bones I was ok, but they gave me one as I asked and it did come back ok
So do ask for one and dont be put off.
chris
My onc organised a bone density scan for me without any prompting before I started on Arimidex.
This was in Leicester.
Hi Chris, this was my first ever scan, been healthy…ish until diagnosed…
I don’t know what being a larger lady has to do with having a scan as I’m a “larger” lady with no aching or broken bones, they do need a comparison or how will they know if you get problems later on?
Thanks to everyone for the encouragement to go for the scan. Now how to get it done!
Best
Chris
I think thin people are more prone to thin bones. I am thin and I asked to have a bone density scan before diagnosis, as my Mum had bone problems and I was considering coming off HRT. It did come back normal for my age. I had hoped it would have been better than that, as I had been on HRT for so long. I have stopped taking it now and as I am now on Letrozole, I asked to take calcium as well.
Ann x
I was on HRT for 11yrs, came off them 2yrs ago, just got over the hot flushes, then had dx last feb so then on arimidedx so the hot flushes started all over again lol, I’m 65 yrs this yr.from gloucester.
dont know if you get another bone scan, or how often?
chris
OK folks, the surgeon has agreed to arrange a bone density scan hurrah.
Now what occurred to me after I spoke to the nurse who rang me to tell me was whether the Arimidex and the scan are going to be necessary if examination of the lymph nodes after surgery shows no cancer cells and I have no breasts.
Has anyone looked at all the risks of bone thinning, joint difficulties etc. versus risk of cancer re-occurrence after a double mastectomy and an all-clear?
Why would I be taking the big A for five years?
Chris
Hi
I’m glad you’ve got the bone scan arranged.
Yes, I asked my onc, and you should ask yours cos our risks of subsequent cancers vary. I too have clear lymph nodes and no breasts (I’ve got implants)
My risk of dying from cancer in the next 10 years was 3.5% - the same as my risk of dying from anything else like falling under a bendy bus. Taking Arimidex for 5 years reduced that to 2.5%.
The risk of me getting a secondary cancer within those 10 years was reduced from 17% to 11% - something like that anyway. That to me was well worth trying the Arimidex for 5 years.
I don’t have a risk calculation for bone thinning/joint pain… can we? I know I’m at risk of osteoporosis as my mum has it after chemo for ovarian cancer and my aunt has it having had a hysterectomy in her 40s (now both in their 70s).
But with the support and counselling from the medics, I decided I wanted to reduce those cancer risks, and I’ll deal with the bone risks as and when they arise.
hope that helps
River
I had my masectory three years ago, cells were pre cancerous, so I did not go down the chemo line. MRSA prevented me from having radio therapy due to the scaring from the MRSA.
I now take Arimidex as I had problems with the Tamoxifen but I suffer with joint stiffness in my hands and my knees and now my hips are painful.
Has anyone any suggestions to relieve it?
Holly
I have been on Arimidex coming up to five years now and like the other postings I did feel all the aches and pains described, but after about 12 months it just got easier, either that or I just seem to have acccepted it all? The only thing that I suffer from now is vaginal dryness, although I did also have my ovaries out so my oestrogen levels have got to be really low, (which for me is what I want).
I am getting a little concerned now as my consultant did say that she would like me to come off it this year…and I am really am worried that I haven’t got that extra cover, although I was reading some paper from America to suggest that they are not sure if it continues to work after 5 years?
Has anyone else read or heard anything?
Hi,
I have been on Arinidex for just over 4 years and recently had my annual appointment…thankfully all was ok…touch wood/fingers crossed and anything else that will keep me well!
Anyway, I discussed Arimidex with the breast care nurse and she said that next year I will come off it as my 5 years will be up. I asked her why and she said that after that length of time the side effects outweigh the benefits and studies show that 5 years is the optimum time for the drug. I feel a little anxious at the thought of ‘flying solo’ next year but it seems there is little choice. In years to come they may change their mind but it’s a fairly new drug and not many studies have been done over a decent length of time…the experts know far more about Tamoxifen as it has been prescribed for many years.
Sheana x
My onc told me that studies had actually been done that indicated that there was no benefit after 5 years -so I am counting the months (only another 38 !) until I have no more ‘is it me or is it hot in here?’ moments!