Letrozole aches and pains

SamL890

Hi everyone,

I hope everyone is having a good day today

I was put on Tamoxifin in March after my BC treatment, and then I found I had PALB2 so I had an oophorectomy and my Onc changed my meds to Letrozole now I have no ovaries. My sister in-law is a naturopath and kinesiologist and after all my chemo and radio she tested me and gave me a herb concoction to "clean up the mess". I told her what ever she gives me needs to be hormone free and compliment Letrozole, she has treated many cancer patients before and said all is ok. 

So, I was feeling ok, well, as ok as you can be for being put into chemical menopause, you know, hot flashes, a few aches and pains, brain fog.. hmmm maybe a bit more than a fog not great but I was managing, so my Onc says she isn't happy with me being on the herbs, she cannot know if they are still giving me hormones (or what ever it does) so she told me to stop, she said my body basically needs to go cold turkey on hormones and she needs to be sure nothing is effecting my medication.

So, I went off them straight away and literally a week later....hoolie doolie I feel like I've been hit by a truck! My aches and pains in my back, legs, elbows, shoulder, neck are horrible, my legs have that tight tense feeling like they are just about to cramp...all the time! Sleeping is almost impossible, either waking up and staying awake or waking up and tossing and turning from my legs being so restless, and my ears constantly ringing all night. 

I wonder if those herbs were amazing and helping me through this or they were hindering the hormone therapy. I wish we had a way to find out. I really don't like feeling this way and the lack of sleep just effects everything else in my life and I just feel like I am complaining about my aches and pains all the time. I don't have another appointment with Onc for 12 months now, BC surgeon in 4 months. 

So my question is...does it get better? I am 3 months into a 7 year course. I am doing light exercise with light weights 4-5 times a week, eating pretty healthy, but I seriously feel like I can't stand, sit, lay, squat down, get back up...anything with it hurting like I have done a 3 hour intense workout and over done it and all I can think right now is that 7 years is a long long time!!!

Any advice or feedback will be greatly appreciated, be it good or not so good
Thanks for listening 
Sam

arpie

SO Sorry that you are having bad side effects on the Letrozole @SamL890
 .. it happens to some of us - it happened to me    

Does it get better?   It 'can' ..... but I didn't cope with it either (as I already came from an arthritic background & it compounded it bigtime) ... so I swapped over (after a break from the Letrozole) to Exemestane.   It suited me much better than Letrozole for 6 months.  But then, I ended up on Anastrozole (been on it for 5 years now) & it was the best of the LOT for me.  Matter of fact, Tamoxifen is the only one I HAVEN'T tried! 

I would suggest you contacting your Onc for an urgent review .... You have given Letrozole a 'good shot' and your body is not liking it ... you DO need some quality of life, if you are to continue taking the AIs ....

Do you have a Breast Care Nurse?  She might be able to go in to bat for you as well   She would hear similar stories from other women ... and at the end of the day, we all know our own bodies .... 

take care & all the best xx

SamL890

Thanks @arpie, Yes I think I need to try something else, I am just seizing up, haha feeling like an old chook! Thats a good idea, I might try and talk to my BC nurse, I forget about this now because I feel I'm out of treatment because Ive finished Chemo and Radio, but really I'm not... this next stage seems to be more bothersome than the rest to me......AHhhhh the gift that keeps on giving
All the best to you too x

Tri

Hi @SamL890 I am so sorry to read about the impact you’re experiencing- I encourage you to follow up about the Letrozole. Although not as severe as your situation sounds, I have some aches in my ankles and legs since being on Letrozole (I started in March). The aches come on in the early evening. 

For reasons of travel I am going to take a few weeks break from Letrozole - with my oncologist’s agreement -  we both think it will be interesting to see what happens. 

I hope your nurse can support you in approaching your oncologist as I’ve found mine to be very open to considering the range of hormone therapy medications to see if there is one that suits me better. 

SamL890

Hi, just a follow up for anyone that reads this. I went to my Onc and she has taken me off Letrozole for 2 weeks and then I am to start Anastrozole. (fingers crossed) She said my symptoms were a mix of surgical menopause and medication.
First week I came off Letrozole, I started feeling better in a few days, mouth back to normal, ears not ringing and aches and pains seem to reduce. But I am now in week 2 and my aches and pains in my joints and muscles are horrible, I feel I am struggling with surgical menopause on top of the medication and as I have never had either before, I dont know which symptoms are from which!!
How do you cope with menopause when you cannot take any hormone remedies to help due to your BC being hormone receptive?

cranky_granny

Hi @SamL890 I found its a trial and error to find what helps. Exercise is number 1. Gentle to start and never take it past painful
I found it took some months before the initial reaction to anastrozole and Palbo to settle down. It doesn’t help that i also have arthritis 
Ive tried many things over the last 5 years. I avoid the strong pain relief as much as possible as I do know my arthritis is only getting worse as I get older. I take panadol osteo morning and night. For pain. Magnesium for cramping and calcium with D for the Osteopenia. I  did used red krill which worked but did horror’s to my reflux. 

Theres new treatments/mediation for the menopause that have come about recently. Your GP should know what they are. I have heard good things about them. 

I also found the time of day I take the pills made a huge difference. I take mine at 7:30 - 8pm at night that also took a trial at different times to find what suited me best. 

I actually sat with my oncologist who had my Ct and bone  scan results and for each area of pain had a corresponding report about what was arthritis and what was lesions interfering with nerves. I now only have tell her of any new pain or different reaction. I am about to have a short break off Palbo just to get my immune system to improve.  Bit scared about that one because treatment is working  Doc knows best so I’ll follow her recommendation. With anything that you try run it past your Oncologist first.