I’ve been on letrozole for 16 months now and I’m 51. After suffering severe joint pain, fatigue, hot flushes, you name it…I was at my wits end with letrozole last year. Having had multi-focal lobular ER 8/8 (mastectomy and DIEP recon) I was determined to stick at it, but it was making me extremely miserable. My gp suggested turmeric for my joint pain in March this year and I can honestly say it’s been a game changer for me. I buy quite an expense one, Tera Nova, freeze dried 350mg and I take 2 a day. I’d say it took a month for me to realise my joint pain had all but disappeared. I walk at least 5k a day, and I’m no longer crippled by the end of each day. I also take 2 x 210mg magnesium glycinate in the evening which has helped my sleep. I still get a bit of fatigue and maybe 2 hot flushes a day, but overall I feel great.
I’m sure being active helps, but the turmeric has worked miracles, and I just want to shout it from the rooftops, as I know how debilitating this little pill can be! I know everyone reacts differently to different supplements, but I’d really recommend giving it a try ladies xx
Hi Diddy, I don’t to put a dampner on this as it sounds as if it’s working really well for you but my BCN’s told me not to take tumeric as it would interfere with my medication, I’m on Anastrozole though so could be different but maybe worth checking? Hope you don’t mind me saying this x
Hi @diddy1 I am trying not to be negative here but as @Cat10 also said the pharmacist at the chemo unit told me that turmeric is a no no as it interacts with quite a lot of chemo, hormonal, Abemaciclib, etc. medications and she told me to stop taking it.
Hope you don’t mind me asking this but have you checked with your onco team about taking it. Xx
Sorry forgot to mention I am 46 and I am also taking Letrozole and have been struggling with very bad knee joint pain…been on Letrozole since February 2022 and even my oncologist wanted me to switch to Tamoxifen as the pain is really debilitating but I refused as all medicines are with side effects and I don’t want to start a new medication with another set of side effects. @diddy1 have you tried acupuncture? It works for me…but it’s expensive…
I also had debilitating joint pain on Letrozole - I tearfully contacted my GP & BCN’s after over 2 years - I am now on Exemastane & its helped hugely… wish i’d done it earlier. I would recommend aking your oncologist, BCN’s
Thank you so much for your kind messages @CLC @Cat10 @mun4o
My GP looked up interactions when she suggested the turmeric and said it was safe… but now you say that, I do recall my BCN saying not to take herbal supplements- I’d completely forgotten! (Another side effect of letrozole ) I’ve tried to get hold of the nurses today but they’re in the MDT meeting so I’ll try again tomorrow and see what they advise. I’ll be screaming in pain from the rooftops soon by the looks of it xx
Hi @CLC I am just wondering if you experienced any other bad side effects when you switched to Exemastane? I may ask my oncologist to swap the Letrozole with another AI. I just thought that because they are from the same group of medicines it won’t make much difference but now that you are saying that it helped you immensely I’ve changed my mind about switching to another AI maybe…
Hi @diddy1 and no worries. I’ve been struggling for a while now and am doing acupuncture every other week which seems to help with the joint pain somewhat but not with the awful, awful hot flushes. There is new non-hormonal drug coming on the NHS in January next year called Veozah. It’s apparently reducing the occurrence about 70%…who knows…I am also on antidepressants for the hot flushes which I am not happy about as I am not depressed but that’s the only option for BC ladies it seems. My GP told me that even though they are not getting rid of the hot flushes all together they are helping and the only way to check is to stop them. I haven’t done that yet as I am currently abroad on holidays but I am thinking about stopping them when I am back home.
Please let us know how you get on with your BCN.
Take care. Xxx
Thanks @mun4o
I was on HRT for perimenopause symptoms when I was diagnosed and was starting to feel fantastic! I came off the HRT and straight onto letrozole - bam, constant hot flushes, brain fog, mood swings the lot. I have to say though, that most of my symptoms have definitely improved over time and it’s really only the joint pain that has been the problem for me. I’m lucky that the hot flushes aren’t too big an issue - so I really feel for you…I hope you get the opportunity to try Veozah when it becomes available next year. We shouldn’t have to take antidepressants when we’re not depressed!
I’m hoping that now I’m fully recovered from my big surgery and able to be more active, if I have to stop the turmeric, I’ll maybe feel better anyway you never know, it might have been a placebo?! I’ll also look into acupuncture- I think they offer it at a nearby Helen Rollason Centre…
I’m certainly at peace mentally - I hope you are too. I’ll let you know what my BCNs say tomorrow xxx
Its mainly joint & muscle aches & pains - every step I took I felt either in my knees or thigh muscles. I don’t have so much diaorrhea either! I was also much more tired. I was sleeping probably another hour a day?
I am so glad i asked to change!
@CLC maybe that will be my next step if necessary… just a bit nervous to change to a different AI for some reason! xx
@diddy1 oh yes, I am certainly at peace with myself that’s for sure…I think everything happens for a reason…
I’ve been through a lot the last 3 years and honestly, I am a different and definitely better person…
Wishing you all the best for the future. Take care. Xxx
Hi @diddy1
Thank you for sharing this nd I’m so pleased it is working for you.
Dr Liz O’Riordan recommended this website to check for drug interactions with herbal medications. Eating herbs such as turmeric is not an issue such as adding in your curry. I have turmeric added in an immune boosting shot with hot water, it offers some help. I didn’t want to go down the herbal route as your can’t guarantee the quality as they is no regulation like medicines.
I wrote this about Fezolinetant/Veoza. @mun4o
Here’s my immune boosting recipe if anyone wants to try it.
It’s so important to share our experiences to help others and get help ourselves.
@naughty_boob thank you for sharing your recipe!! I can see that there is a smoothie option but can’t see it - can you please post it again?
Many thanks🙏
If you don’t want to give up your Turmeric I would suggest asking your BCN if they can check with a Pharmacist about it. Make sure you tell them about everything you are currently taking to make sure they don’t overlook any possible interactions. Sometimes there’s a good reason not to take supplements and other times it’s just because they aren’t sure so they tell you not to to be on the safe side . The Memorial Sloan Kettering page often recommended by the Nurses is interesting on this one - it’s contraindicated with chemo . I’m not on Abemiciclib so don’t know much about it so if others on this thread are saying you can’t take Turmeric with that then I believe them . I haven’t seen anything on that page specifically related to AI.All you can do is get good quality info to make the best decision you can because diet and supplements become a mjnefield once you’ve had BC and there’s a lot of conflicting info. I’ve given Evening Primrose Oil and my AMD prevention supplement due them containing a lot of Vitamin E and also my collagen supplement and protein bars which contain a lot of collagen . You begin to wonder sometimes what you can take .
I’m taking it as MOJU Turmeric shots which seem to work better for me than any tablets or capsules I’ve tried . Xx
Smoothie was : Add one or two shots to a blender with banana, pineapple and water to blend and serve.
You’re welcome
Another thought, Diddy! My Ibandronic Acid caused me a lot of hip and back pain but I was advised by my BCN’s to try another manufacturer/brand of Ibandronic Acid as sometimes it can be the fillers in them? I did this and whilst not perfect, it definitely helped . . . until our Dispensary changed them back again this month and have been back to square 1 so feel your um, pain. Am getting them changed back again! Don’t know if that’s worth a thought and if it will work with a different manufacturer of Letrozole? x