I searched through the threads and couldn't find the answer, so apologies as I'm sure this has been asked so many times already I have MBC on Zoladex, Kisqali and letrozole. I have debilitating Bone, joint pain and stiffness my oncologist recommended panadol osteo and glucosamine which has not helped even slightly and is not interested in prescribing me anything elseI would be so grateful if anybody can offer advise of what has helped them as it's affecting my QOL and mobility Thanks so much in advance :)

In the search bar type in 'letrozole' and a mountain of info will pop up. ( i just tried it) The reason why your onco is not interested in prescribing anything else is because there is nothing else really. People have tried all different things, some work for a while others don't work at all and it's very much a what works for one person may not for another. If it gets too much ask for break for 2 months, no less, because it takes that long for the pain and discomfort to subside.

I'm sorry to hear that you're in so much pain @DaffyD. I'm afraid I have to echo @Artferret, the oncologist shrug is real because there isn't anything that universally helps. Some people have found acupuncture to be helpful while others (me) not enough to be worth the pain or cost. Some do well with some supplements, or regular exercise or CBD oil. I get relief from seeing an osteopath every fortnight, the occasional massage, a magnesium bath every now and then, and with my GP's blessing, a really strong painkiller occasionally just to have a break from the unrelenting pain. It's trial and error as to what will assist you. I hope you find something. K xox

I don't know what your bone density is like (or drug interactions) but see what your onc says about a short course of prednisolone. I went on it for a week and, although the doctors were a bit sneery about it on the webinar broadcast, it took almost all of the pain away for that week and for a few weeks following. It did creep back gradually but I don't think it has ever reached quite the same level. It's worth asking.

@DaffyD Are you a member of the Mets group - it is private and others on there may be similar to youhttps://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer

jennyss said: from jennyss in Western NSW Thanks so much :)

Bone, joint pain and stiffness

DaffyD
Member
6 years ago
thanks again xx
arpie
Member
6 years ago
I’ve had debilitating aches and pains since starting AIs 18 months ago when I started on Letrosole. I changed to Exemestane and currently on Arimidex .... and have been taking medicinal cannabis oil for 4 months now and it is working for me.

I ‘plateaued’ a month ago and the aches returned but am now taking both cbd and THC during the day and am fine again. I possibly need a break to ‘reset the receptors’!

My Onc is aware I am on it and has written a letter that lives in my wallet! The really good thing is that the aches and pain are no longer a 24/7 problem ... just a now and then thing, sometimes days apart.

I don’t take any tabs now other than prescribed ones. Before, I was taking anti inflams and panadol osteo.

All the best xxx
DaffyD
Member
6 years ago

iserbrown said:

@DaffyD

Are you a member of the Mets group - it is private and others on there may be similar to you

https://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer

Yes I am I will check there thanks
DaffyD
Member
6 years ago

jennyss said:

from jennyss in Western NSW

Thanks so much :)
iserbrown
Member
6 years ago
@DaffyD

Are you a member of the Mets group - it is private and others on there may be similar to you

https://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer
jennyss
Member
6 years ago

from jennyss in Western NSW
DaffyD
Member
6 years ago
I've had pneumonia twice this year and was on high dose pred both times and it was wonderful all my symptoms completely disappeared. But once they weaned me off it all came back. My bone density is bad so they wouldn't let me continue on it for this only. Thanks for you reply @Sister
Sister
Member
6 years ago
I don't know what your bone density is like (or drug interactions) but see what your onc says about a short course of prednisolone. I went on it for a week and, although the doctors were a bit sneery about it on the webinar broadcast, it took almost all of the pain away for that week and for a few weeks following. It did creep back gradually but I don't think it has ever reached quite the same level. It's worth asking.
DaffyD
Member
6 years ago
Thanks for the advice I will give these a go @kmakm much appreciated
kmakm
Member
6 years ago
I'm sorry to hear that you're in so much pain @DaffyD. I'm afraid I have to echo @Artferret, the oncologist shrug is real because there isn't anything that universally helps. Some people have found acupuncture to be helpful while others (me) not enough to be worth the pain or cost. Some do well with some supplements, or regular exercise or CBD oil. I get relief from seeing an osteopath every fortnight, the occasional massage, a magnesium bath every now and then, and with my GP's blessing, a really strong painkiller occasionally just to have a break from the unrelenting pain. It's trial and error as to what will assist you. I hope you find something. K xox