Need suggestions, desperate don't know what to do

"Booklets | Breast Cancer Network Australia" https://www.bcna.org.au/resources/booklets-and-fact-sheets/#hormonetherapy

Hi @Zan. My situation is similar to yours. I too have been on Letrozole for four and a half years and have osteopenia in my spine. I have always been a big exerciser doing weights a couple of times per week, dragon boat racing & Zumba and take Vitamin D suggested by my oncologist. But the only thing that has stabilised the osteopenia is 6 monthly Zometa infusions for bone strength. I am coming up to my 5th and will have 1 more after that, which my oncologist says have long lasting effects, hopefully enough to get me through 10 years of Letrozole. If you are doing ok on Arimidex you could try the exercise & bone strengtheners suggested by your oncologist but switch to Tamoxifen if you have further deterioration. 

Hi @Zan I take Arimidex and have been taking it for 7 months after swapping from letrozole. I have been taking an AI for a year. I will try to keep this short, but my oncologist is really keen to make sure I take an AI with the least side effects which is why I swapped. I still have stiff joints in the mornings, and again he is keen for me to give tamoxifen a try. In his words - less joint issues, much better for bones. I told him my concerns (which are based on what I have read on forums etc so not necessarily totally scientifically proven 🙂) that AI’s are much better etc. He said that there was a time when tamoxifen was the only drug available and it is still an excellent drug. He also said that it may be slightly below an AI, but not that much and if it meant better quality of life and less joint and bone issues, it is well worth thinking about taking. I guess basically he was really reassuring me that tamoxifen was still an excellent choice. One thing he said was that he didn’t want me ‘sucking up’ the issues until one day I just get fed up and refuse medication altogether - he tries to make sure I know there are alternatives and they are still really good choices.
Perhaps monitor your bone density really closely to see if the new regime is working, if not, switch to tamoxifen which is still an excellent medication. Take care 

Hi @zan,
I took Tamoxifen for 4yrs - it doesn’t cause the bone problems that the Aromatase inhibitors do. I had hot flushes with it which was the downside,otherwise Tamoxifen was doable.I’m now 11yrs on from my bc diagnosis and I’m fine. If your oncologist is giving you the option then it can’t hurt to try Tamoxifen and see if it agrees with you.You can always go back to Arimidex.

Thanks so much @Glemmis, @Mazbeth & @TonyaM for your great suggestions.

Also thanks to @iserbrown for the booklets.

my understanding is that tamoxifen has been known to cause uterine cancer , (not in everyone of course , but it’s there ) Has your Doctor discussed that with you ? Unless youve had a hysterectomy already so this doesn’t relate to you then .

Unbeknown to me I already has osteoporosis before cancer treatment . Major bummer - had always meant to have it checked post menapause but didn’t follow through. My oncologist has put me on A1 femera  daily and zometa infusions every 6 months , and after 4 months it’s given me hot flushes and joint pain but manageable so far. (?early days ?may settle or get worst ). She has left tamoxifen off the table because of the risk of uterine cancer .
 That’s the biggest issue I have with all this damn hormone therapy - A1 and Tamoxifen have their own side effects and balancing the side effects with outcomes is challenging especially as they affect each person so differently. 

Hi@noosa_blue150, 
Your suggestion sounds to me very reasonable. you are right with Als medicine the only bothering side effect is osteoporosis which hopefully could be managed by bone strengthening injections instead of the risk of getting uterine cancer. It is almost 4 and half years I have been on Arimidex and the other side effects I have like nausea,headaches are manageable so far as it is much reduced. Luckily I don't have any joint pains.
Unfortunately my oncologist doesn't give me much time during her yearly consultation. On her yearly appointment most of the time first I have to consult with her registrar and then only for couple of minutes with her, that was the reason I was confused for taking decision for my treatment.

I'm wondering that how come you have been put on Zometa infusions every 6 months because I have been advised to take once a year? 

I can’t answer that with certainty  - was told,every 6 months , so that’s the regime I’ve started ( it’s possible because I’m already osteoporotic, and I know i had triple positive breast cancer - Oncologist said it would also help “prevent” any loose HER2 cells recurring in bone ( it’s not a,guarantee, but it does help prevent ) . As my tumour did not totally regress at surgery after AC and taxcel, I’m now on kadcycla or T-DMI (a herceptin and another agent) which is a new therapy for early breast ca patients .gives you a extra 12% insurance against recurrences , when compared to,herceptin alone according to KATHERINE study. That may also be why every six months -I’m on a chemo,regime which will affect bones as well,as hormone therapy. I will,ask next time I see her .
I noticed @glemmis mentioned 6 monthly zometa too so it may depend on your bone status
at bone scan  
? I have been taking 600mg calcium and vitae tablets as well twice a day, but last week my blood,tests flagged excess,calcium in blood so,I’m off them for a week and redoing bloods Monday . The never ending cycle continues !

Thanks very much @noosa_blue150 for providing the detail. Yes it depends on your bone status, mine is close to osteoporosis. After many calls and leaving messages for my oncologist, at last she is going to call me next Monday to discuss with me my health condition over the phone as in Sydney we are in lock down. Life seems to become more difficult and challenging day by day. 
Good luck to you. Take care.