Breast Cancer Now Forum

Hi Sarah, As I understand it, all the aromatase inhibitors can cause loss of bone density, which is why we are supposed to have a bone density scan soon after starting. My scan showed very mild osteopenia so a month after starting exemestane I also started a bisphosphonate. I've been told that as the osteopenia is only very mild, there is a good chance that as well as preventing further loss the bisphosphonate may even get me back into normal bone density. I'll have another scan in just over a year. I switched to exemestane from tamoxifen because of endometrial lining thickening, so I'm keen to stay on exemestane and I feel better all round on it than I did on tamoxifen. Personally, I'm not worried about the bone loss because in my case it is being addressed and monitored. I do make sure that I get a fair amount of weight bearing exercise and am certainly more conscious about ensuring this than I was before. I assume that your initial scan must have shown good bone density so hopefully if you have had any loss it won't be a problem. Good luck for your next scan! Eliza ... View more

Hello all, I have to say that 15 months after starting Aomasin/exemestane I still get joint pain and stiffness but it isn't too bad once I've got moving and provided I don't sit for too long without getting up, wriggling my fingers and rotating my ankles. I've just picked up a new bag of meds from my pharmacy (I use the local Tesco). The alendronic acid and the quinine are different brands from the usual ones they give and the exemestane is back to being Aromasin! Eliza xx ... View more

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 ... View more

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 ... View more

Hello Twinny, I switched from tamoxifen to Aromasin about a year ago after an ultrasound I had as part of the UKFOCSS study showed thickening of the endometrial lining. I didn't have any physical symptoms but felt happier switching. My GP then warned me that I might get some bleeding as a result of the switch, although as it turned out I didn't. She just wanted to warn me so that I didn't immediately assume the worst! Eliza ... View more

I was in a similar position, Naz. Ovarian and prostate cancers at young ages pushed up the score into the testing bracket rather than there being a large number. Eliza ... View more

Hi Naz, In my area, the fact that it is end January wouldn't mean much. Because of that, I managed to negotiate in advance getting my results by post and then an appointment to discuss them (appt was about 3 months after result letter). They were prepared to agree because I'd already been dx with breast cancer. I wanted my results before the appointment so that I had time to take it in, discuss it with family and formulate the questions I'd want to ask. In the event they didn't find a mutation, but I still had a lot of questions! My feeling is that if I had received the result at that appointment I would have wanted another one to discuss it once I had had a chance to think about just what I wanted to know. I think I would also have wanted the opportunity to discuss it with family and for them to think about what questions they had. I was told at the appointment that if I thought of anything else I could get back to them. I didn't, but the fact that I could was very settling for me. The appointment was an opportunity for me to discuss the risk and my options for managing it in future. Feel free to pm me if you'd like more info. Eliza ... View more

I've been away, so hadn't realised you'd had to go in, Anthi. Glad to hear that you are back and hope you make a quick recovery. Take care of yourself. Eliza xx ... View more

Great news on the clear mammogram, leadie. Not so good having to chase up the result though. My Year 3 mammo is at the end of the month, with a clinic appointment just over 2 weeks later, which is quite long enough to wait. Fingers crossed for you, cherub. Eliza xx ... View more

Goodness, Anthi, just what you did NOT need. Hope it heals quickly. And I hope your appointment with your GP goes well. Eliza xx ... View more

Hi Jan & Anthi, I've now done nearly a month on the generic and the headaches and nausea are nearly gone. That is pretty much the same timeframe as when I first started on Aromasin. I have noticed that I've not been sleeping so well, but I slept for England on tamoxifen and that has gradually been returning to normal on Aromasin so it might just be a continuation of that. Pre BC I needed very little sleep. Eliza xx ... View more

Hi Anthi, Like Jan the nausea comes and goes throughout the day for me. It is definitely getting better as are the headaches, so hopefully they will go completely soon. Once the initial side effects were past I only had nausea if I didn't take it with/just after food (breakfast). I haven't noticed any improvement over time with the joint pain/stiffness, but it isn't too bad really. Exemestane is definitely causing my hair to thin. I too am taking alendronic acid (and the Adcal D3) as my dexa scan showed slight osteopenia. Fingers crossed your scan next week shows improvement. Hope you get the switch you'd like, Hazel. The BMS sounds horrible. Eliza xx ... View more

Hello Jan and Anthi, I started on the generic exemestane (mine is Teva) about two and a half weeks ago, almost exactly a year after switching to Aromasin from tamoxifen. I've been back to the headaches, nausea and slight stomach upset that I had when I started the Aromasin, which seems really odd. It is starting to settle down now and I seem to remember that it took 2 - 3 weeks last time too. I'm having more hot flushes but I think that is because the heating at work is a bit erratic at the moment rather than anything else! So far I haven't noticed any difference in my joints. It will be interesting to see how we all fare on the generics and whether the different brands make a difference. I was better on Nolvadex D than generic tamoxifen but managed to settle into the APS brand, which my pharmacy used to keep for me. Eliza xx ... View more

Hello David, Thanks for the reminder. There is a small group of us from Asia, UK and N America posting awareness messages on facebook and twitter every couple of days during October. One of the week 1 messages was saying just your point - men get breast cancer too but most of the information and support is aimed at women. When I was having radiotherapy there was one lone bc man being treated at the same general appointment time. Eliza ... View more

I switched from tamoxifen to Aromasin and noticed an improvement overall, although I do have more joint problems now. I need to do some basic exercises before getting up but then things aren't too bad. Fatigue is better than it was on tamoxifen, but still an issue. Having said that, it has just gone generic and that may make a difference ... I'm happily walking, swimming and curling. I do have a problem lifting the stone but that is more to do with the strength on my surgery side than the drug. This is such an individual thing that I suspect you won't know until you give it a try. You may find you are much better, but you may find things are worse and I don't think that there is any way you can tell in advance. Good luck! Eliza xx ... View more

The onc registrar went through Adjuvant thoroughly with me at my post rads appointment and I found it helpful. He mentioned its uses and limitations. I'd previously seen another dire registrar and the consultant and had been less than happy with them. So I complained - and have had excellent treatment since. OAL, I think I'd be tempted to complain about his patronising attitude. Eliza xx ... View more

Yes, they all assume radiotherapy if you've had lumpectomy. As V says, by their very nature the statistics have to lag a bit because you can't have 10 year statistics for new treatments. For me, the usefulness of them is in weighing up what benefit a particular treatment add against the risks it poses. So, for example, for me the risks of chemo outweighed the potential benefits, whereas the benefits of tamoxifen and Aromasin outweighed the risks. I lost weight on tamoxifen, although now that I've shifted to Aromasin I've had to be careful that I'm not putting it all back on. Eliza xx ... View more

The original brand was distributed by Pharmacia. You can tell which is which because only the originally patented brand is called by its trade name of Aromasin and it will say Aromasin on the pack. If it only says exemestane then it is a generic. Eliza xx ... View more

Just picked up my next lot and it is generic - Teva brand. I haven't yet checked the ingredients. I haven't been having much trouble with Aromasin so I'm crossing my fingers for the same with the generic. Eliza xx ... View more

Hi, Most breast cancer is not due to a fault in one of genes, but as you say without knowing your history it is very difficult to assess if you are likely to be high risk for one. If you are refused genetic testing, you might be able to get it through being in a research study. Would be worth asking about before going down the private route. I actually did get testing (no mutation found) but I am also in a study which would tell me if they had found a mutation. Good luck, Eliza ... View more