I know there are a few posts on Letrezole already, im not really after advice I just needed a safe space to moan about life lately without burdoning my family.
I was diagnosed February '24, stage 2, grade 2 BC, spread to lymph nodes, highly ER and PR receptive, 5 months chemo, Paclitaxel and EC finished in July.
Lumpectomy and Lymph node removal in August, started Letrezole mid October, currently on radiotherapy, 15 sessions.
Also have Zolendronic Acid for next 3 years and I have Goserelin injections for now but they are planning on removing both overies and fallopian tubes in the new year.
Im 38 and im struggling! My DR wants me to stay on letrezole for 10 years, I dont want to do it another 10 days at this point so 10 years seems impossible.
Since starting Letrezole my moods are very, very low, I can have a good week and feel like im getting used to the meds but then it takes very little to trigger a low mood and within 24 hours ive isolated myself and convinced myself my family are better off leaving me because im so miserable and cant seem to find the joy in anything.
The pain is unbearable. My hips and heels of my feet are the worst. I sieze up, can barely lift myself off the couch, struggle with stairs, I used to love walking and now its a chore, im missing out on so much and its leaves me asking why ive spent the last year fighting to stay alive when being alive is bloody hard and nothing like what I had before.
I started CBD this week but to early for any improvement as im building up the doseage but ive read that antihistamines can possibly help?
I also have chronic kidney disease diagnosed pre cancer so I can not take meds like ibuprofen as they arent safe for my kidneys.
Sorry for the loan moan, needed to get thoughts out of my head!
X
Moan away my scouse friend, no one will mind on here.
I think its quite therapeutic to get your thoughts and feeling out, and some times easier with strangers, but these strangers all have one thing in common and we all support each other.
Sorry youāre struggling so much, Iām quite early on the treatment trail, and only just recently started popping pills. Iām fortunate not to have any severe symptoms (yet) but the thought alone panics me.
You might find some alternative suggestions on here which you can ask your BC team about and whether they are suitable for you. So well worth the rant, to see what responses you get.
Hope things get easier for you soon x
Thank you 
Just one of those days, it does feel better getting it off my chest.
Hope everything continues to go well for you xx
Welcome to the forum @scousesurvivor . Sorry you are having such a miserable time There are alternatives to Letrozole so if itās impacting your life badly itās worth asking if you can discuss trying one of them eg exemestane (Aromasin), Anastrozole or Tamoxifen to see if you have a better quality of life on another hormone therapy .Hoping you feel better soon . Best wishes Jill
Hi
Have you always been on the same brand of Letrozole? Although they all contain the same, they have different coatings. I had read about people changing brands due to what the Pharmacy provided and having issues. I have been on Letrozole for over a year - two different brands. I was recently given a different brand and was so exhausted and achy. I asked to be changed to one of the original brands and noticed an immediate improvement. Might be worth asking about this first.
K x
Ive read a few threads today about different side effects from different brands and funnily enough my new prescription is a different brand just purely by coincidence.
Ive been on Sun Pharma since the start but this new box is from Accord, so will start them tomorrow and see if that helps xx
Everyone is different. I have been on Sun Pharma and Accord but was changed to Amarox. Now thankfully back on Accord.
Fingers crossed for you.
K x
I phoned my BCNās in tears - they advised to stop taking Letrozole & I then saw my lovely oncologist 6 weeks later - no problem, switched to exemestane and much much better,
Thats good to know! Ive got an appointment early December so im going to see how this new brand goes and if theres no improvement I definately want to come off it, no point fighting to beat cancer to feel like you have no quality of life after it, its a minefield isnt it.
Glad you got sorted, good to know there are options xx
Hi,
I am wondering if thereās a reason that they put you on letrozole rather than tamoxifen? I thought tamoxifen was the drug of choice for premenopausal women? I was (just) not quite into menopause at 53 when diagnosed last year so started tamoxifen. They were planning to switch me to letrozole as soon as a blood test shows im in menopause but I have refused to change from tamoxifen. The side effects that I read about letrozole terrify me. Tamoxifen is not too bad and ābetter the devil you knowā is my attitude. Maybe letrozole might give me a couple of percentage points better outcome but Iām weighing up quality of life vs being absolutely miserable.
Hope you find a treatment that suits you better.
Hugs x
All I can offer is sympathy. I went through exactly what you are suffering and gave up Letrozole and its other toxic buddies. These drugs are just awful. I am sending you positive thoughts and masses of hugs.
Hello
Youāve been through it and now the good stuff to help you back towards normality is harbouring that ongoing physical and mental recovery, doesnāt seem fair does it?!
Keep talking writing it, sharing it helps
My personal experience with Letrozole in early 2023 led me to talk to my nurse team and oncologist who switched me to Anastrozole
14 months on from starting that i still get aching back/ hips / thighs some days but the unnerving mood swings, flushes and most of the brain fog have gone
I use Epsom Salts for twice weekly baths ( helps with aching) , take turmeric, calcium Vit D daily and keep tits and toes crossed i can manage this for a few more years and then smile, laugh hug and love the 5 year anniversary when it happens
Talk to your people, they can switch you too
Good luck
Thank you xx
I was told Letrezole would give me a far better chance, my age apparently played a factor, being 38 and my cancer being very high risk to come back, they said Letrezole gives me the best chance
Thank you xx
Feeling a little better today after having a good old moan, its a rollercoaster!
I read somehwere recently that finishing chemo etc is the biggest anti climax and its so true, this part is harder than having the cancer.
But I will get there, see how this brand switch goes and then speak to the doctors in December xx
I have very similar issues and also canāt take anti inflammatory stuff. I have found taking paracetamol every six hours day and night really works. Takes two to three days to get to sufficient levels in the blood. I take mine at 3 and 9 and set alarm in the middle of the night. It is incredible. Your GP can prescribe as you are limited to how many you can buy over the counter. For me itās been a game changer as long as i donāt miss a dose. Basically letrozole is a very small very shitty drug. Big hugs
This is the best place to have a moan @scousesurvivor - youāre in good company. I started on Letrozole in June and only just is my knee and hip starting to ache. I already have a replaced hip so not in the mood to go down that route again!!! My moods have been okay but I wonder if itās because I take supplements? I take flaxseed pills, turmeric with black pepper: vitamin c at bed time, magnesium at bedtime and calcium bone formula at bed time. Iāve checked with the pharmacist and she canāt see any reason not to. I also take rhodiola if my mood is low. Iāve got those awful Ibandronic acid pills to take every morning and start ameciclib in January.
In one of the live sessions this week a lady commented that she couldnāt deal with Letrozole so her GP put her on something that began with ex.
Donāt suffer lovely lady, go to your GP/Oncologist and see if they can swap you to something else. Sending hugs
Thank you so much for everybodys kind words, support and suggestions, it really does mean a lot!!
A little updateā¦ I switched to the Accord brand of Letrezole and in just the 2 days there is a noticeable difference, I felt like I glided down the stairs this morning compared to the normal bone breaking pain, im shocked at the difference I didnt really think it would help much but if it carries on like this its so much more tolerable.
Mood has also lifted a lot thankfully but I have spoken to somebody today and ive been referred fo Psychological Medicine so if I do dip again im already in the system waiting for an appointment which is good
Thank you again and sending love to everybody going through it xxx
Hi! 
Reading your post is like a mirror image for me. As a stage 2 patient in 2020 I too had full mastectomy, chemo ( docetaxel and cyclophosphamide) radio therapy, hormone suppression filgrastin and Zolendronic acid infusions. They are great at giving out treatment but rubbish at managing or even acknowledging side effects!
I was incredibly fit before treatment running half marathon distance regularly with no problems. Post treatment I have been plagued by side effects that would make even an unfit couch potato depressed! But to give you hope I am getting my head around ways to manage the changes so do hang in there! You will be going through a grief curve which takes sometime to navigate. The first thing I would say though is that I had suicidal ideation on the Aromatose inhibitors so talk to an expert if you think that is happening. Eventually I switched to Tamoxifen but even that made me so low that Iāve decided to stop after just four years and take my chances as percentage benefits are quite low in reality. Itās a gamble but quality of life is also super important!
I had bilateral tendonitis caused by Letrazole and fixed by stopping the drug and using GTN patches. I had to do all my own research to get this result. It took 18 mths of being pushed pillar to post in NHS systems! I am now back in the system with hip pain which I also believe is a result of tendon damage primarily and now some arthritis( lack of oestrogen makes this worse) I was stiff as a board post Bisphosphonate and I believe that this damages muscles and joints alongside the chemo. It causes a rheumatoid type reaction for some people and has likely caused disc degeneration in my spine. You are not told any of these risks or how to manage them but if you look at posts and research many BC patients suffer. I also have a Tachycardia which I never had before! Donāt even get me started on inability to have a sex life!
So solutions: 1) you are not alone or going crazy or making a fuss! 2) you will get used to a new normal 3) There are things to improve if not to cure the problems
I use beta blockers for my heart
Shock wave therapy and fascial release for my joints ( alongside cox 2 inhibitors for pain but probably not suitable with kidney issuesā¦ sorry)
GTN patches to increase blood supply to tendons and discs which helps aid healing.
Symptoms did improve a bit coming off hormone suppressants and my mood definitely lifted. However there are other fixes like cognitive therapies and hypnotherapy. Actually I also did life coaching which helps drag you up towards something positive.
Keep moving as that helps surprisingly and never give up.
We are not moaning. We are speaking up to help find better solutions for others. I wish you the very best of luck and a happy life.
I am so glad you are seeing some positive improvement. I gave up on Letrozole and feel better for doing so. Putting up with pain and depression should never be the option and quality of life should be paramount. As as you can see here there are many options worth trying. Good luck to you and wish you all b best for your outcomes. Love you all
I feel ya. I started anastrozole about a month ago and my depression and joint pain are getting bad. I was already on bupropion and trazodone for depression and my mood goes from low to lower. The joint pain makes my radiation treatments hard. When I had the first appointment for the x-rays and getting everything aligned, I cried for 15 minutes straight. I was in so much pain.
The techs were really apologetic and took great care the next day to make me more comfortable for my first actual treatment. They added pillows to my neck and legs and it helped a lot. Still uncomfortable but at least the treatments are only about 5 minutes.
My tumor was ER negative so I was hoping I wouldnāt need the hormone therapy but my oncologist insisted since the PR was positive and I have an extensive family history of cancer. I have to take D3, too, since my vitamin D was so low and the anastrozole affects bone density. Itās like everything you do to prevent a recurrence has an opposite effect that requires more treatment.
Iām glad you unloaded and do it as often as you can. I text my friends when Iām really low and they take me out to lunch to rally me back to fight. Iām 67 and itās easy to feel like āwhatās the pointā but then I remember the few things that Iām looking forward to and that gets me through another day. Take good care of yourself.