I thought you didn’t but just touched a nerve I think so sorry if I offended you - it was wrong of me to answer as I did. I made the decision based on my general health and risk of recurrence and opinion of my team to stop - time will tell if that was the right decision . I’ve just had to explain all this to a new group of people I’ve become involved with and I’m feeling a bit defensive.
I tried all the supplements you are on except flaxseed oil ( though have the seeds on porridge oats ) . I still take Magnesium and Vit D and I was also taking a lot of Ibuprofen as well as using Diclofenac gel which was not good because Ibuprofen interacts with my BP tablet . I do Yoga 1-3 times weekly and even with all that there was pain and stiffness everywhere and a Dexa scan showing secondary osteoporosis .
Yes it’s very scary - I never considered that the fact that you are not having problems with the Letrozole might make you think it’s not working. From what I’ve been told actually most people don’t get joint pains , it’s just that most people who are ok don’t really post about it so there’s no reason to think it wouldn’t be working for you . There are threads on here to confirm that - it’s that just people who are having problems use it as a safe place to complain and seek support .
It’s good that you got your supplements checked out with your team as it becomes a bit of a minefield once you have had breast cancer - I have had to abandon some of things I was taking .
So sorry to hear that you have been called back for biopsies and I will keep my fingers crossed for you . Xx
I was told not to use turmeric with Letrozole. Then a dear friend who swears by homeopathic remedies for joint and bone pain suggested tart cherry supplements.
I find it extremely helpful. 4 months in and the bone pain has all but disappeared.
Best of luck!
I’ve seen it mentioned on other posts a few times - I also noticed that’s it’s not on MSKCC . If I have pasted this correctly there’s a link here to this study to say that it can help Letrozole induced joint pain though it’s obviously not without side effects . This came up fairly easily in a search https://pubmed.ncbi.nlm.nih.gov/34275765/
Hi,
There’s definitely conflicting advice being given out. I’m taking Anastrozole and I was told to try taking a Vitamin E supplement to see if it to helped with my hot flushes, by my surgeon at my first op follow up appointment.
It didn’t help by the way so I stopped taking it after the first bottle. I didn’t know there was any risk by taking this.
The Nurses recommend the Memorial Sloan Kettering website herbs and supplements page according to which Vitamin E is not recommended as it can be associated with a very small risk of recurrence . I abandoned my eye health supplement for this reason . I have also seen the Nurses tell people not to take this in their posts. I wasn’t told about it either. At one point I was taking collagen and a Pharmacist that my BCN contacted about it as part of my Holistic Needs Assessment seemed to think that was ok but there’s been such a lot of controversy about it that I decided to stop that as well.
Joanne I checked that site last night and found that glucosamine which my husband has been taking for five years should not be taken by people with glaucoma, which he has. He asked me to thank you, he has of course now stopped them. xxxx
MSKCC was recommended highly by Dr Liz O’Riordan who also makes it clear that herbs/supplements have very little research and science based evidence. Lots of anecdotal evidence (people’s experience).
My team said not to take anything that isn’t prescribed even Vitamin D. You can eat food high in things, so for Vitamin E that could be sunflower seeds and many nuts. So nutrition is key.
Penny Brohn charity have loads about nutrition, they do many online sessions which makes it very accessible. You can book 1:1 support as well.
It’s a bit of a minefield . @celie1 I think the Vitamin E might be a newish thing perhaps you could discuss it it with your surgeon if and when you next see him - he may not think it’s a significant risk . I stopped taking my anti - oestrogens therapy so probably need to be even more careful about what I take than you. @nannabee it might be worth your husband mentioning this to his Ophthalmologist and see if he is aware of this . Xx
I use open water swimming in the same way . It’s frustrating when you aren’t able to do the thingS that help for any reason . How much longer will you have to avoid the cold showers for ? I would have thought that they would be helpful after a month or two if everything has healed.
Currently I haven’t been swimming because of sewage alerts . I’m really missing it. I don’t like cold showers as much but my shower is broken and cold baths aren’t much fun .
Hi Diddy - I’ve also read that turmeric can have an effect on oestrogen production. It’s so unfair ax it’s really beneficial against cancer but not, it would seem, breast cancer. Hope you get an answer from your BCN soon xx
I have been interested in trying turmeric but a quick bit of research tonight to help me decide, threw up that one on the drugs it can interact with is omeprazole and other prescription antacids. As I am taking lansoprazole I have decided turmeric is a no no or me unfortunately.
I assume turmeric as supplement could an issue as it can interact with some anti cancer drugs but is it also an issue to buy and cook turmeric? confused here
After reading all of the comments here - I went to see the Pharmacist in my local chemist as I’m on Letrozole and Pantoprazole; she couldn’t find anything to show that I should stop taking Turmeric tablets.
It’s because I’ve had 18 lymph nodes removed in total; so no sudden movements with my arm; no body brushing (which I’ve been doing for about 20 years) and no cold showers. Not until everything heals internally. I’m waiting for radiotherapy on my lymphs too as out of the 18 removed, 4 presented with cancer cells. CT scan showed no other metastases around the body so that’s a bit of a godsend x
There is a lot of conflicting advice about the use of termeric with letrozole it seems!
I saw my breast surgeon on Friday and he was pleased about how much the turmeric has helped me and is okay with me taking it. So my BCN, my oncologist and my breast surgeon have all given me the go-ahead now…
Personally I’m going to take my chances, as I feel so much better, but I would encourage everyone to check with their own medical team to make sure they’re happy too. I would hate to be giving the wrong advice.
Good luck 🩷 xxx
It’s frustrating when you are trying to get over something and the things you want to do to help you get over it are the things you can’t do . I’m pleased your CT was clear xx
. I’m really missing it. I don’t like cold showers as much but my shower is broken and cold baths aren’t much fun .
🩷 xxx