Don't think I can cope on Letrozole

Hi Karen,  you need to speak to yr oncologist if you cannot cope, because I am on the Accord brand of letrozole and that's OK for me, still get joint pain but you will on any of the tablets they give you. But if I go on any other brand I  am a 90 yr old cripple in 3 days of being on them. You need to get a brand that suits you better. But you need to trial and error unfortunately which takes a bit of time, I was going to change and try tamoxifen but I then changed my mind in that it's better the devil you know after reading other posts.  Hope all goes well but don't suffer so you can't function or sleep cheers Sally xx

I would add that when I was on tamoxifen, taking vitamin D3 with K2  helped me massively. 

Lying or sitting down for long periods intensifies the pain. So I keep moving every 15 mins or so and things are a bit better. Also the days that I drink loads of water my bone and muscle pains are much better. 

Hi ,

Yes I have exactly the same, I have been taking CBD oil for pain in my back and it has completely stopped the pain in my hands and its helped with the hot flushes as well, only the odd one and not intense. It was £23 for 10mls at the health food shop and worth every penny.

Thanks Kargus, I mentioned it today to the nurse giving my Herceptin. I've got an appointment middle of May with the oncologists nurse, I did mention it last time to her but at the time I'd just had my zolodronic acid injection so I wasn't sure if it was that. I will speak to the chemist too. I'm back at work next week and I look more wrecked now than when I was having chemo I think. I stand up bent over then by the time I get to the other end of the room I'm ok. Happy days I will definitely see about a different brand. 

Thanks for replying,

Take care

Karen x

Thanks for that Baki, I've tried to up my water intake today, I'll see how that goes.

Take care

Karen x

Hi Snowys Mum,

That sounds interesting, I'll have a look at that. I can't cope with this for the next 3 years.

Take care

Karen x

Hi Karen, I can sympathise with you. I was put on Tamoxifen even when I'm post menopausal because of it being less damaging to the bones. However I had so many side-effects that my oncologist changed it for Letrozole. The accord did suit me better regarding the low lactose content because I'm lactose intolerant as there is no lactose free letrozole out there. But after three months on the Letrozole, the bone pains and the muscle pains along with dizziness, unstable on my feet and fuzzy head, just to name a few of those unbearable side-effects, i went back to my oncologist. He took pity of me and agreed for me to stop any hormone therapy until my next mammogram at the beginning of August. I just have to remain positive and look after myself as best as I can until them. I hope I don't have to go back to any of the four hormone therapies as there are similar debilitating side effects with Tamoxifen, Letrozole. Exemestane or Anastrozole.... 

At the end of the day it will be weighing up whether it's worth putting up with debilitating side-effects for 5-10 years and still no guaranty that the cancer won't come back or have a reasonable quality of life and hope and pray the cancer won't come back!!!!!

Good luck Karen but be happy with your decision

Hi Snowys Mum

I know this is an old post but I am looking into taking CBD+oil for my back pain and was wondering if it would have an adverse effect on the letrozole I'm taking.

If I am correct you are on Letrozole and taking the oil as well and you are OK?

Any advise will be greatly received!!!

I have finished all chemo and radiotherapy treatment and since it has start ed to leave my body all my old aches and pains are coming back with a vengeance!!!  Which I think is down to the Letrozole mainly however, I do suffer with Spinal Stenosis and think the chemo kept it quiet for a while!!!

By the way I am due to see the Oncologist at the end of August but don't want to wait that long to ask so maybe my BCN could advise?

Many thanks and take care

Hi Edwina,

this idea might possibly help you as it’s helping me?

take the generic form of Claritin which is Loratidine, it’s a one a day antihistamine. They use it in the USA for bone and joint pain that arises with G-CSF used for white cell boosting. Nobody seems to know why or how it works, but it does help together with regular paracetamol. Might take a week or so to gradually help but I began when I started on Alendronic Acid. Even before the BC I had mild osteoporosis, and now being on Letrozole I suspect that’s not improving matters! (Need to book my next Dexa soon) 

hugs xxx