FLClover said:

Omg @ChezaH! That must be so uncomfortable, to say the least 😮🙁. Good luck with the surgery, I hope it sorts it out so you’re pain free and more energised 🤞🍀♥️

Thanks FLClover, I am so looking forward to the surgery and trusting that it will fix the problems xx

@Chevvy

Have you read up on Hormone Therapy.   Here's a link that hopefully you will find helpful.   
"Hormone therapy | Breast Cancer Network Australia" https://www.bcna.org.au/understanding-breast-cancer/treatment/hormone-therapy/

Hi @Chevvy, I’d do as @MicheleR suggested and get a second opinion, if you haven’t already. There have to be more options than just Tamoxifen. Plus, these hormone suppressing meds only add a small percentage to the survival rate, and heaps of women stop taking them and don’t have a recurrence. 

Omg @ChezaH! That must be so uncomfortable, to say the least 😮🙁. Good luck with the surgery, I hope it sorts it out so you’re pain free and more energised 🤞🍀♥️

MicheleR said:

Hi @ChezaH,

Im not on tamoxifen. I just started exemestane a month ago. Reading through your comments i just thought that is terrible. 

All through this journey what seems like people need most is hope. Hope that things can get better and clearly your onc has crushed that. Are there no other choices for you? If you are at the point where you are in desperation thats not good. 

I always think a little plan is a good idea to help yourself. What can you do?

Second opinion?
Gp discussion about impact to your life?
Try different brands. 
Keep a diary of everything so you can show oncologist how bad to get some action?
Consider other factors?

How long do you have to try tamoxifin before you know if its tolerable? 

Having started on one of these blocking drugs, ive experienced some headaches, temporary (i hope) mood changes and some aches and pains (not sure if my shoes are playing into this), hot flushes continue, im very tired at 4pmish. For me at the moment this is tolerable and reasonable. I can continue my life. 

I hope things improve and you can find help witin your team. Can breast cancer nurse help? Us there anyone else you trust?

Michele

Thanks I have lots of other health issues, and have to go in for surgery in 3 weeks to have an hernia pull and tied down, as it has pushed 80% of my stomach up into the esophagus so it is leaning on my lungs and causing issues, no wonder I am tired. LOL Cheryl x

 

Hi @ChezaH,

Im not on tamoxifen. I just started exemestane a month ago. Reading through your comments i just thought that is terrible. 

All through this journey what seems like people need most is hope. Hope that things can get better and clearly your onc has crushed that. Are there no other choices for you? If you are at the point where you are in desperation thats not good. 

I always think a little plan is a good idea to help yourself. What can you do?

Second opinion?
Gp discussion about impact to your life?
Try different brands. 
Keep a diary of everything so you can show oncologist how bad to get some action?
Consider other factors?

How long do you have to try tamoxifin before you know if its tolerable? 

Having started on one of these blocking drugs, ive experienced some headaches, temporary (i hope) mood changes and some aches and pains (not sure if my shoes are playing into this), hot flushes continue, im very tired at 4pmish. For me at the moment this is tolerable and reasonable. I can continue my life. 

I hope things improve and you can find help witin your team. Can breast cancer nurse help? Us there anyone else you trust?

Michele

Hi @Chevvy,

Doctors are such cheery little souls aren't they?  Fancy telling you something like that when they bloody well know these tablets are not a guarantee anyway.  Pisses me off every time I here some get told that sort of thing.

Anyhoo..............I pretty much tried everything over the first 12 months.  Fish oil, magnesium, glucosomine random joint products accupuncture etc etc etc the list was endless.  What did eventually work for my back and hip pain was blackmores joint formula advanced recommended by a friend with constant back issues. Dear as poison but often on sale at chemist warehouse. It didn't totally get rid of it but it's a pretty dull roar these days.

 I was a bit further down the track when i discovered it than you are, so don't know if its strong enough at the start but is definitely worth a try. I got a friend of mine that's on Letrozole on it when she was near not walking from the pain and it's improved for her as well.

The second thing that really helped was a change of brand. They tell you they're all the same but it can really make a difference. 
Changing brands subdued the nausea, I still get it (3yrs on it now)  but it is far less often and doesn't last for long, same for the dizziness.  It also helped ease the hot flushes from atomic to annoying but I think time played a bit of a factor in that as well. 

All the best sweet.  xoxoxo.  Bloody drugs.  Phooey.

Thanks, yeah I had thought of that, well actually my hubby had, but then we read reports it could interfere with the effects of the tamoxifen, Hard to know what info to believe. Is good to have this forum and hear what others are doing and trying, might be worth a go... chat to dr coming up. 

Hi @Chevvy
Sounds like you might need to try the Magic Oil that @arpie takes 🤔. I’d give it a go.