Given that I’ll be taking Letrozole for at least seven years I’m keeping my fingers crossed that the cumulative effects don’t suddenly pop up when I’m least expecting them.
I’ve been taking sun brand Letrozole since May 2024 with a couple of different brands sometimes. The first six months were a nightmare and I had every side effect going. My team must have been fed up with me threatening to stop it and I did have a short break at one stage. Upon trying to take it at different times I settled for last thing at night. After six months the side effects all started to ease and now at 9 months I have none, I’m even taking it first thing in the morning and this month Sun weren’t available so I’m taking Accord which hasn’t caused any problem. At almost 79 I did seriously consider was it worth taking but am glad now that I stuck with it.
It’s a completely personal decision and one that you must insist on making even when your medical team try to persuade you otherwise. I’d say stick with it but know after that first six months it’s completely understandable that some don’t.
Whatever anybody does, I wish you happy, carefree days and peace and tranquility xx
hi all
currently on accord but have had 2 others since staring in november 2024, again as others depends what brand the pharmacy have in
2.5mg
my surgeon recommended to take at night which is around 9.30pm with my calcium tablets.
side effects were minimal, hot flushes, dizziness, achy joints.
the joints continue but i do a lot of pc work as well.
it will depend on each person, hope this helps x
There seems to be no rhyme or reason for all the different reactions/non reactions. We are all amazingly unique.
I take accord 2.5mg for the past 2 weeks. For the past 3 days I have been getting excruciating pain in my hands at night, numbness of fingers and sore wrists. Before then was getting sore knees. Hot flushes mainly in the day. I have now stopped letrozole on advice of oncologist and will see what else he suggests next week
I’ve taken Sun brand 2.5mg for almost 4 weeks. I hate it My hips, shoulders and neck are all agony. I’m making sure I walk everyday but end up hobbling like a little old lady due to the pain in my hips. That said, I do have other musculoskeletal issues which probably won’t be helping. I’m really hoping the side effects wear off as I can’t bear the thought of this for years and years
Welcome to the forums and thanks for sharing your experience. I love your name sproghead.
It cheered me up no end
Seagulls
Hi, I
a) I’ve been on letrozole since 12/23. Mostly Sun and Accord. Started Abemaciclib 150mg alongside end 04/24.
b) 2.5mg
c) On letrozole alone only effects were a return to menopausal hot flushes (I was 69 when started the pills) and a prickly sensation when I got hot. That settled somewhat in the 4 months but since starting the abemaciclib I’ve got numbness in fingers, and slight return to neuropathy at the end of my big toes. I have had a couple of bouts of uti, very dry skin and hair and thinner hair. Other strictly abemaciclib gut symptoms settled well and I’ve stayed on the 150mg dose with satisfactory blood test results …
I genuinely don’t know which med causes the symptoms, as either could do it and won’t until I quit the abemaciclib in May 2026. Meanwhile I drink more water and rarely touch alcohol.
d) I take the letrozole at night with the 2nd abemaciclib pill
I think I’ve given responses in the wrong order- medication brain, chemo brain, 70yr old brain?
Totally agree I have same.
a) Which Brand of Letrozole do you take - Accord
b) What strength is Letrozole prescribed - 2.5mg/day
c) Side effects - some joint pain (but I exercise most days which may help with this); increased cholesterol levels (and I don’t like the side effects of statins); the sensation that tiny explosions are happening throughout my body; worsening tinnitus; hot flushes (but I don’t sweat, so cope with this); fatigue (as an active 60 year-old this was the killer for me); 25% change in kidney function with CKD.
d) How long have you taken Letrozole - 8 months
e) Particular time of day you take your Letrozole - 6 months with breakfast (or second breakfast), then 2 months in the late evening. This was better.
Having breezed through the lumpectomy & remodelling, and the radiotherapy for an invasive lobular carcinoma, grade 2, 19mm, ER 8, PR 8, HER-2 NEG, I was a natural candidate for Letrozole. After 8 months, however, I’ve stopped taking it.
I haven’t decided whether or not to try anything else, as I hate taking drugs and the side-effect horror stories are putting me off. It’s all a gamble, but that ER 8 reading is scary. I intend to look into it further, hence signing up for this forum, something else I do not find easy to do.
(This is my first post.)
Welcome to the club maybe you don’t really want to join. It’s great to be among other people who can share their experiences. We are all different but a problem shared is a problem halved.
Sorry to use so many well worn phrases but hope to hear from you again. I live in East Sussex and I moved from Hastings cos the birds kept splatting me. Hence my alias… Best wishes
from
Seagulls
I am almost 72. I was diagnosed with invasive ductal carcinoma March 2024. I had a lumpectomy in April. No chemo or radiation. I started letrozole 10 months ago.
2.5 mg
Every side effect in the book. Significant weight gain, even with eating healthy, significant protein, fiber, 1500 cal range. Continue to gain. Joint pain has increased from what I had from arthritis to crazy pain. I’m sure it’s also not helped by the weight gain. Decreased energy level. Some constipation. Trying to manage as best as I can. I will be on this medication for five years. I’ve heard many say it affects their cholesterol levels and other things. I haven’t had bloodwork yet, but that has always been something. I’ve never had an issue with so, hopefully, that continues. Good luck to everyone.
Thanks for feedback. I have been taking letrozole for 2.5 years and have lots of joint pain, swollen fingers, high cholesterol and high blood pressure. I am now nearly 70 and feel breast cancer treatment is making my quality of life a lot worse. I was told it was “well tolerated” that’s oncologist speak for “we don’t hear complaints” not that it is “tolerable”
Seagulls
Hi,
I had a lumpectomy and then Radiation. I am now 70. I started letrozole September, 2023. My side effects became intolerable in December of 2024. My Oncologist told me to stop Letrozole for 8 weeks. I started exemestane. I was waking up with horrible pain in my knee, hip and thigh. Since switching I am fine. NO SIDE EFFECTS. I was about to stop all hormone therapy. Give Exemestane a try if letrozole gets too unbearable.
Thanks for your advice. It’s worth a try.
Exemestane here I come maybe.
Seagulls
I started letrozole about 3 weeks ago but stopped last week as I was getting intense pain in my hands at night. I’m now on painkillers which take the edge off. Not sure what the oncologist will suggest
Hi.
I was also about to stop hormone therapy. It’s a quality of life issue. I spoke with a cousin, who is an Oncologist. After speaking to him, I decided to try Exemestane. Apparently, Anastrozole is very similar to letrozole. We agreed that if the side effects become intolerable, I would quit hormone therapy. Since I had Stage 1, I have only a small chance of reoccurrence. So far, so good with Exemestane. I drink Hibiscus tea, which supposedly reduces blood pressure. I like the taste. My BP was 103/69 yesterday. Good luck.
I have been on Letrozole for over a year and had to wait until I’d finished Herceptin injections and a few months before they would consider me taking a break, as both can cause joint and muscle pain. One of my many side effects. I was nearly. 55 when I started and I feel like someone in their 80s. I struggle to get up in the morning being so stiff, my sleep is affected as it hurts and I have to move to get comfortable again, not to mention hot flushes. I have taken Veoza( Fezolinetant) for flushes which was great but cost prohibitive due to private prescription and regularly seeing consultant and bloods. Moved to Oxybutynin but that’s like Letrozole, different brands give their own side effects.
I spoke to one of my team 3 weeks ago and agreed to stop Letrozole for 4 weeks, it’s been 3 weeks and I feel so much better, it’s not perfect, the aches and pains as well as hot flushes are much less. I had chemotherapy with Herceptin and was told that it can make existing niggles feel much worse. So if you already had arthritis it could make it more intense.
I was told I could have Anastrozole, exemestane or tamoxifen but as already said Anastrozole side effects are very similar to Letrozole. So I’m thinking Exmestane.
I was on an online call with a lady in her 70s via a cancer charity, who said her quality of life has diminished and after 4 months is considering stopping Letrozole. Her GP told her she must take it, no option of changing. So I suggested she contact her Breast Care Nurse and ask for a review. I think GP’s are reluctant to change anything prescribed by a specialist.
Anyone else swapping, please keep updating as it will help others in the future.
Hi-my answers are
Brand - Sun for 3 months then Accord
Strength - 2.5mg
Side effects - went back to hot flushes and night sweats/waking after I came off HRT so not sure the Letrozole is to blame.
Some foot pain after sitting but goes when I move . I dog walk every day and do 2 exercise classes a week.
Vaginal dryness but treatable with over the counter non hormonal products
My hair is weirdly growing faster and thicker - my hairdresser noticed this
How long have I taken it for - 9 months
When -just before bed ( I pretend it’s still my HRT pill)
Overall I have tolerated it very well and as I am ER/PR 8/8 it seems pretty important I take it.
Hi Silver6,
Hope this response finds you well.
I was diagnosed with breast cancer with metastasis to my bones
a) Which Brand of Letrozole do you take ie Accord;Cipla etc.
Started on Letrozole by Glenmark Pharmaceutical with zero side effects. However, I was given 2 weeks supply because the pharmacy did not have enough in stock. On resuming Letrozole, I got sick. After a week I decided to check the medication and it seems that I had been given different Letrozle, one that is made by Sun pharmaceutical…I decided this is not for me, on switching back to Glennmark - all horrid symptoms had gone and went back to normal i.e. to no side effects with brilliant results
b) What strength is Letrozole prescribed?
2.5mg
c) Side effects Yes or No
Glenmark pharmaceutical: Brilliant! No side effects …
Sun pharmaceutical: side effects like sweating, bone ached, back ached, muscles ached, menopausal that have only heard about but personally had not experienced. Not taking letrozole by Sun pharmaceutical again!
d) How long have you taken Letrozole
3 months and 6 days
e) Particular time of day you take your Letrozole?
I take it at 1.00 am … it can do it’s thing whilst I’m sleeping. The Cancer Agent blood test, CA153 range is 0-31. My first test was 5500, it has dropped to 1064 in 3 months and 6 days…brilliant
Good luck and hope your progress is as good as mine has been.
sending you love and good health