Are you on Letrozole? Please take part in this

Maybe it’s worth asking our GPs if they can prescribe at least 3 months supply in the hope of getting the same brand for at least 3 months XX

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Huge relief. Had bloods and bowel (FIT test) results back and both normal. Just waiting to find out if they’re going to do anything else as I was told I needed colonoscopy and full checks of uterus/ovaries as well. Just a further note on the letrozole debate. I will have been on it for 5 years in May and after the first few months, tolerated it well. Thank you for your good wishes, hope you’re well xx

Ok thanks. The tests sound a bit grim but it’s worth knowing what is going on. My husband had a colonoscopy and survived it. It does help the doctors to rule out anything serious or to get you a treatment plan if it does prove you have any evidence of disease. Good luck and hope you can get someone to go with you,
Seagulls

reluctant to take Letrozole & hoping for the least amount of side effects

Awaiting oncology appt for Radiotherapy after breast excision & then seperate op for sentinel node biopsy which was clear :star_struck:

Feel diminished & sore but don’t feel like celebrating as the stress and prospect of ongoing therapy is something I’m extremely worried about hey ho I’m still upright & walking xxx

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i have ben on letrozole since sept 2022 so will be 4 years this Sept

I have pains in my legs and would love to stop but they said take it for 5 years and I didn’t follow advice 19 years ago in June 2003 and I was diagnosed again in June 2022

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Hi, I have been on Letrozole since September 2019. I have to take it for 10 years following a mastectomy and lymph node clearance, chemo and radiotheraphy. Also had 6 Zolodronic Acid infusions, six months apart over 3 years starting at the end of my chemo. I suffer with pains in my knees which means it is often difficult to get up and downstairs and up and down from any low furniture. My oncologist said last year that I could try Tamoxiifen but I have decided better the devil you know than one you don’t. My GP sent me for a Dexa scan and I do have the start of Osteoporosis so I now have had one Zolodronic Acid infusion in January this year 2026 and will have another yearly in Jan 2027 and 2028. My Letrozole finishes in September 2029 and until then I am determined to take that little tablet if it might hopefully keep my cancer away. By the way I am 75 this year and want to live life with my wonderful family for as long as possible. I wish everyone to have the very best of outcomes. Big hugs to all. Take great care. Sending love. sunshine 21.

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Thank you sunshine. I have not had a dexa scan so will ask about this at my next follow up or ring one of the nurses and ask her

Seagulls

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A. Accord

B. 2.5mg once per day

C. Yes

D. 1 year and 2 months

E. Evening

Additional note: evening as I found could manage hot flushes better then, achy joints are symptoms…manageable with Paracetamol.

Hi Sunshine21, I’ve been taking Letrozole since May 2024 with a break in the middle while I was on chemo. I was prescribed AdCal (Calcium + Vit D) to go with them to protect my bones and have so far been spared joint pains. I don’t know if this is because of the AdCal or just luck. Not many people on here mention AdCal so I don’t know how common it is to be prescribed as a Letrozole antidote. Unfortunately after a blood test before Christmas I’ve discovered I now have too much calcium in my blood and that is currently being sorted out. If it’s not one thing it’s the other.

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Hi magl, Funny you should mention your Vit D tablets. My oncologist prescribed Calciichew which was Vit D3 and calcium twice daily. I have taken these since Sept 2019, but when I had bloods etc., before the rheumatologist prescribed me more Zolodronic Acid my bloods showed my calcium level had become too high. She took me off the Calcichew and prescribed only Vit D 3 tablets. Hope all goes well for you and everyone else going through this journey. Take care. Sunshine 21

Hi I hope you’re well today :heart:

I have stage 4 Lobular Breast Cancer & I too was given Adcal D3 about 3 months ago & have Denosumab Injections every month when I pick up my Ribociclib at the hospital. I should take 1 twice a day but they give me terrible indigestion so I take 1 every other day. I figured something is better than nothing & also my Oncologist says my Calcium level is okay right now anyway so recommended taking 2 every other day to manage the indigestion. I’ll build up to the 2 haha.

Sending hugs :heart:

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Hi Loki, I never dreamt AdCal would ever be a problem. They taste like fruity sweets so I’ve never taken them too seriously. I got into a bit of panic when I was first told the calcium in my blood was too high. Dr Google told me this could be a sign that breast cancer has spread to the bones so naturally I feared the worst but my GP assures me it’s probably because I get enough calcium from my diet and I don’t need the AdCal. I also was on two a day and have been taking 2 every other day for the past six weeks to see what happens. I had another blood test yesterday and will find out what’s what “by the end of the week”. Good luck. :crossed_fingers::heart:

Hi Magl yeah it’s strange, I’ve no idea why it causes me to have indigestion as it’s not really something I’ve suffered from before.

I do have Gaviscon here but when I’ve gone on Dr Google it says to take Adcal & Gaviscon 4 hours apart. Something to do with the ingredients in the Gaviscon apparently.

Unfortunately my Lobular Breast Cancer has spread to the top & bottom of my spine, left & right sides of my pelvis, top of my right femur & left collar bone. I had a bone biopsy taken from my right pelvis last year which really wasn’t pleasant if I’m being honest. I waited 5 weeks for those results which really wasn’t good on my mental health. Apparently the sample was crushed & made it difficult for several different Drs examining it to determine if it was cancerous or not. In the end in was decided that it was sadly.

It’s probably best to keep an eye to your calcium levels if you’re taking Adcal D3. You wouldn’t want it going too high for you. Maybe your GP will suggest having a break from the Adcal for a little while

Lots of hugs :heart:

Oh Loki, That’s an awful lot to contend with. It sounds painful? I really feel for you. If you’re brave enough to try something different for the indigestion there’s a brilliant shop in London, G. Baldwin & Co , that sells herbal remedies and herbal teas to treat most things. They were established in 1844 so know their business. :heart:

Thanks very much I’ll check them out

I hope your results come back alright :heart:

Hi there

I’m at my wits end on this drug -

I’m a 56yr old nurse with a busy life but really struggling with side-effects.

Diagnosed with Lobular cancer April 2019 - 6cm Er +ve tumour no positive nodes.

Had bilateral mastectomy and reconstruction, month of radiotherapy. Was on Tamoxifen up until August last year then changed to Exemestane after total hysterectomy (post menopausal).

The side effects where severe - awful joint/bone pain particularly fingers/hands which swelled up, couldn’t grip things, pins & needles on & off, difficulty writing & driving. Had to walk down stairs one at a time, couldn’t bend down to put shoes on etc etc. Also insomnia, hot flushes, anxiety and fatigue.

Stuck it out till end of November then couldn’t cope any more. Had a month off then started FEMARA 6 weeks ago.

Unfortunately all the above symptoms have returned and I’m now thinking of stopping it all together. I’m worried though about increasing my reoccurrence rate - a constant fear.

Can anyone advise if the side-effects resolve at any point or can recommend a different drug.

My surgeon says there’s new research about ‘baby Tam’ which could be an option but again the reoccurrence risk is uncertain.

I am also no worried that the pains I have could be masking something much worse - how are we supposed to know :face_with_peeking_eye:

Breast nurse

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Hi Linda7

I hope you’re feeling okay today :crossed_fingers: I’m sending hugs & hope you start to tolerate the meds a little easier soon.

I’ve not been on the medications you mention but I would hazard a guess that they’re similar to the side effects of Letrozole & Ribociclib & it’s not easy at all, I understand your struggle.

Why does everything come with side effects :unamused_face:

I have pretty much everything you’ve said. The never ending fatigue, anxiety, hot flushes, depression, hair loss, pins & needles in my foot, dry skin, brittle nails, aches & pains in the joints, awful memory. The list goes on unfortunately.

About 4 weeks ago I ended up breaking down when I was with my nurse. I was supposed to be picking up my Ribociclib & having my Denosumab Injection but I couldn’t “put a brave face” on it any longer & broke down crying. I’d just had enough of how low I was feeling & it came out at while I was at the hospital unfortunately :smirking_face:

My nurse told me to take a couple of weeks break from all my medication, including the Letrozole.

After a couple of days or so I started to feel better in myself even though I knew I had to go back on it all. Just to have that break & feel “normal” again was great!

You see for me, if I don’t take my meds & decided to stop them, my cancer would certainly spread from my breast & bones to other organs. There’s no guarantee that taking the meds will stop it spreading but I’m giving myself a fighting chance & will stay on the meds as long as possible.

I certainly hope that you start to feel better soon. I know it’s difficult but try your very best to stay on the meds your Dr recommends.

I almost forgot, a couple of months ago I started taking Sertraline 50mg off my GP to try & help with my depression & anxiety. It does go some way to helping although doesn’t totally irradicate it sadly.

My Macmillan Nurse recommended I speak with a councillor. She thinks it may help if I talk about my illness to a professional rather than me bottling everything up all the time, saying I’m fine & then having a breakdown :joy: I’ve agreed to give it a try, certainly can’t harm me to try.

Wishing you all the very best :heart:

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Thanks for your reply Loki.

I’m sorry you’re having a rough time too, the tears have flowed here too today - it’s the frustration of being between a rock & a hard place.

I understand you don’t really have a choice, and admire your resilience in persevering.

Really hoping you start to feel better soon. :heart:

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You’re exactly right! We are stuck between a rock & a hard place & it’s totally madening I know.

Many a time I’ve said to my husband, I just hate the whole damn lot of it!! I’m sick of it all, usually followed by tears :smirking_face:

Take care :heart:

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Hi all!

a) originally on Accord but just been given Amarox on last prescription

b) 2.5mg once a day

c) yes - mega night sweats on Accord, up every 2 hours sweating like I’d just done a full gym session! Amarox so far is still having me up through the night but more like hot flushes. Have had an increase in joint pain on it though, especially knees.

d) Since December 2025

e) in bed at night normally between 9-10pm