Letrozole/CTD agony. Yoga is better than massage says Med Research!

[DJK99]

Dear all

Hope you are all doing as well as possible.

I rarely post as have been through an interesting journey with multiple commodities on top of 4 times recurrent breast cancer.

I am writing as hitting the end of the third month mark on Letrozole (am 60, and 10yrs post menopausal) and REALLY struggling with the day by day worsening of the assault it is having on my body. Frankly, I'm in agony. I have Connective Tissue Disease (lupus and sjogrens) and this means my body is in all sorts of pain and inflammation anyway, but Letrozole has taken it to another level. I feel like I've been beaten up, with pretty much all of my musculoskeletal system in a world of pain, even my teeth hurt. I tend to favour natural remedies, excellent diet, tons of Omega 3 and huge amounts of vitamins and greens, keep very hydrated and also do hatha yoga most evenings at home.. and have now also been throwing money at the pain with weekly professional massages with acupuncture... but I am also on codeine, Pregabalin and paracetamol. The meds are just not touching the sides.. and it's becoming unbearable.

For one reason or another (op recovery being one of them) I have only been doing the standing positions for about two years now, however last eve I felt, in desperation, I really needed to restart the floor positions, so I did. Today I am in even more pain, as the letrozole was taken again today... and due to all my conditions, plus my body saying "hello, you've used muscles and joints you've not for 2years... so I'm telling you about it now, loudly!" ;)... That's to be expected for the first week of getting "back on the mat", but, I do feel it helped me last night, just pulling all the muscles out of spasm and releasing what I know to be great inflammation and feels like trapped energy. I will continue with it. Today I've been searching for what else to do, apart from stopping the letrozole, which, of course, I really don't want to. My point of writing it to say I found this current really great research paper stating "results show that yoga intervention reduces AI-associated knee joint pain in breast cancer survivors, as demonstrated by the reduced WOMAC score. In addition, it supports the feasibility and potential efficacy of yoga intervention and provides scientific evidence that yoga is more effective than massage for reducing AI-associated knee joint pain." Which obviously means it could help whole body joint pain... and reading the paper below, it is clear it helps all sorts of AI related body pain.

Yoga versus massage in the treatment of aromatase inhibitor-associated knee joint pain in breast cancer survivors: a randomized controlled trial. Published online 2021 Jul 21

ncbi.nlm.nih.gov/pmc/articl...

I was really pleased to read this, and, before I hit the mat again this eve, I wanted to share it with you all, in case it's something you'd find helpful/feel you might be able to do, even if only chair yoga.. I'm not going to lie, it's painful to do, you need to take it very slowly, and for me, it's almost risky, as I can fall over with dizziness and muscle weakness and all sorts... but I do it by my bed in between the wall/wardrobe so I can put my hand out to steady me/stop falling or even fall onto if needed!

So hoping this hits home and helps even just one of you going through the pain I am - and I'm sure, having read about it everywhere, that's so many of you that are on Letrozole.. I'm hoping to swap to another option, one I'd not heard of - Aromasin, also called EXEMESTANE - as the Tamoxifen made my white blood cells plummet to a bad degree and I had no energy at all so had to come off it. If any of you are on the Aromasin, please let me know how you find/found it?

Thanks for reading, sending my very best to you all.

D

[Ursula_I]

hello

Thank you for your amazing attitude... your pain sounds horrendous yet you sound so upbeat... I am full of admiration.

Just to say I was on Aromasin for five years and it was really easy, no side effects at all. Maybe it will be easier for you than Letrozole.

Also, I had appalling pain when first diagnosed with MBC 18 months ago. I am on slow-release morphine capsules as well as Naproxen (a strong form of ibuprofen I believe) and Paracetamol. It works really well, pain under control.

Good luck with everything inc the yoga which sounds a bit precarious...

All the best

[DJK99 in reply to Ursula_I]

Thanks so much Ursula_1. What a lovely response, yes, I am always upbeat generally.. although, of course, I have my blips, all things considered.. Reason is I was born with quite a lot of bad health stuff so have been used to pain and vileness since a babe in arms. And was taught to fight these things naturally, and be strong, ie not talk about it all. Times changed on that as I just had to get help.

You sound like you've been through/are going through, the mill, so sorry. Were you ever on Letrozole? How did you find it? Why didn't they suggest Aromasin to me originally I wonder... Are you in the UK.. just wondered as I read about it on a uSA Cancer site.

And thanks for the comment on my yoga-ing... that did make me laugh ;).

Hope you ar having a good Easter.

D

[mathematics]

Hi sounds as if you've had a tough time and still going through it. I had to take tamoxifen for 5 years then letrozole for five years. I took it because I wanted to make sure the cancer did not return as my tumour was a grade 3 and gone into the lymph nodes however side effects were a pain. My weight went up by 3 stone and I suffered with other things the docs put down to letrozole. I am glad I stuck it out though and now I'm off them the weight came down again. I wish you all the best I'm 60 next year. Yoga is good for you I know I used to go to pilates with my daughter who has scoliosis and it helped her.

[Happyrosie]

thanks so much for this!

FYI, there are three aromatase inhibitors so give the one you are on a few more weeks or months then ask to change. I found exemestane slightly easier from the pain point of view than letrozole.