Thank you Fran. I’m so pleased that your quality of life has improved. Long may it continue!!
I’ll take your experience and knowledge to my next meeting. I don’t ever see the consultant or an Oncologist now but if I don’t get on with the Exemestane then I’ll push for a meeting with them.
Thanks for your help xx
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I was on Letrozole for over a year with debilitating joint pain. I had a 6 week break and it was a bit better, didn’t fully go away. Not sure how long it stays in your body once you stop. I swapped to Exemestane and have found it’s better than Letrozole. It’s not perfect, the hot flushes are still there but the morning aches ease off after some movement. I was also offered Anastrozole or Tamoxifen.
As already said you could ask for the brand Femara. I swapped Letrozole to a few different brands with some being better than others. Since having breast cancer you find out that the fillers in the tablets can cause some issues with side effects, this was confirmed by local pharmacist.
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Thank you for your reply.
That’s good to know - all the information I’m getting on here really helps. I can cope with the flushes, it’s the joint pain that’s really debilitating. I’m trying to keep active - swimming etc. but it’s a struggle.
Really hoping Exemestane isn’t as hard on my joints. 
.
I guess we’re all different in what effects us.
Hope you stay well. And thanks again.
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You’re more than welcome. This forum has helped me so much as well with others sharing their experiences.
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Hi everyone. Love this forum. I met with my oncologist on Aug 20. No longer one Letrozole because of excruciating joint pain. I know of four gals who had zippo side effects while on Letrozole. Lucky them. Many do well. My next drug is anastrozole. If it’s bad I’ll go to exemestane. Or last choice is tamoxifen.
So I’m routing for anastrozole. Ten days after stopping Letrozole ALL my aches and pains were gone.
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I had a year of being on letrozole and share the significant negative impact it had on my health. After a 3 week break as advised by my key nurse I spoke with my oncologist. I was planning to ask for an algorithm called Predict which (perhaps obv) predicts your personal risk re your breast cancer returning. As my risk is v low we decided together that I’d stop taking it altogether. 5 weeks on I feel SO much better and most of the muscle and joint pain has gone. I advise getting this predict algorithm done (& do tell other women about it too). Obv it may produce good news re risk but it is personal to you and it will help you make a decision re starting or staying on letrozole (or its equivalents). Good luck fellow travellers on this cancer journey x
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May I ask what risk score you received on Predict (obviously only if you feel comfortable sharing it)? My benefit over 15 years is only 1 % and I’m certainly considering not taking it at all, as these odds don’t seem to stack the benefits well against risks. I know it predicts survival rather than recurrence, but with only that information to go on, I’m nearing making that final decision not to start.
hi gabrielle, 3% risk. For me it’s a no brainer. My QoL was so impaired. I wouldn’t take it in your shoes, hope that helps
I met with my oncologist for a follow up today and made the decision not to start AI’s. I think she was expecting it as my Dexascan showed some osteopenia. I don’t want to move to osteoporosis any sooner than I have to!
I asked her to say why she would recommend Ai’s to me, given it seems to have minimal benefits on survival for me over 15 years( using Predict). She said that they follow national guidelines and offer it to everyone who has hormone sensitive cancers, and they have to think on a population rather than individual level in this. She was very pleasant about it - said some people want to do absolutely everything they can to prevent recurrence and others prioritise quality of life. At 65 I’m definitely taking a calculated risk but a 99% chance it won’t be helpful to me, seemed hard to ignore!
So now I’m working on the potential 20-30% benefits of exercise on reducing recurrence…., keeping my weight down and ( sadly) minimising alcohol intake ( I sip my partner’s glass of wine, just to have the taste….)
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sounds like a good decision… I wish you all the best. I miss regular alcohol too!
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