Side effects Letrozole and Zolendronic Acid

Just putting this out there for some thoughts encouragement. 

My History.: DCIS, single left side Mastectomy 2018. 2022 lump found in left side same site, removed and 4 lymph nodes. Invasive ductal cancer and 2 out 4 lymph nodes cancerous. ER+ and HER+  Chemotherapy, EC x4 and Docetaxel x4  2023,  then radiotherapy october 2023, trasrusanab pertusanab/herceptin injections every 3 weeks x18 2023 to 2024. Letrozole started October 2023 target 10 years., 6 x Zolendronic acid every 6 months, 2/24, 8/24 & 1/25 3 left.

From the start of the 2nd chemo, docetaxal till the end of the injections I had 2023 - 2024, 14 months,  I had severe diarrhoea was in hospital for regular, magnesium, phosphate, phosporous infusions, but I coped. During all this treatment, I paced myself and was still physically active. 

The 1st two zolendronic acid infusions were pretty non eventful (maybe 3 days flu like symproms)and was active until about november 2024, feeling quite normal albeit tired easily. Started a little tickly cough. Then I started to feel very fatigued. In mid December 2024 I went down with bacterial infection white spots on throat, tonsilitus. In early january I had my 3rd zolendronic acid infusion. 

Bang!! I had the usual 3 day flu like symotoms, I started to get tingles hands feet, spread to face. Felt odd, fatigued, still cough, started to feel beginnings of carpal tunnel ( I had it years ago in one wrist and was operated on) soooo tired, migraines, cough remaines. GP did bloods, all ok. I was thinking all sorts, my favourite GP said it was side effects, letrozole and zolendronic acid, i didnt understand how it could come on after 1½ years. Maybe because of infection. He also suggesting somatising!?(Maybe cos i have mental health history)  But I said its not that, i know myself. Bless him, i think he was just putting it out there.

Then 3 weeks ago I started bleeding. I went through menopause and stop having periods 2017.

Thankfully the female GP straight away referred me and yesterday I had an ultrasound. Meant to hear today, and or letter within a week. Whilst doing ultra sound internally he did ask if ive been tested for DVT, which I havent. He also indicated 'nothing sinister' but when I asked 'is it the side effects?', he shook his head. Obviously he wasnt going to discuss. So I know Ive gotta wait now to see outcome, but am interested in others experience.

I will be honest these last few months Ive felt worse than during chemo radiotherapy. 6 months ago I started going to gym, since christmas Ive hardly been.

Fatigue, shooting pains,  bone ache, tingly hands feet face, mild carpal tunnel, persistant cough, joints clicking in and out, muscle weakness, migraine and now breakthrough bleeding.  I have read some of the past threads, and seen some of comments re side effects letrozole/zolandronic acid, i just find it odd Im only getting this now after a year and half and not at begining. 

I feel disappointed as i thought this was the easy bit, and had hoped this would be a good year, having finished main treatment and mental health support and now I find I feel like Im more run down than ever. I really dont want to stop the letrozole or zolendronic acid as I was high with ratings. 

Any thoughts from previous experiences will be greatly received and I will post again whrn I hear more. Ohh and ps I also have chest xray on saturday. 

Many thanks and good recovery to you all xx

  • Hello Bovril

    I'm really sorry to hear that you've recently been struggling with some new health concerns that may be linked to the treatment that you are going through. It sounds like it's been a difficult and frustrating time for you. 

    It's good to hear that your GP has arranged some additional tests to make sure that there is nothing else underlying that is causing the problems you've described. Hopefully, you won't have to wait too long for the results of these tests.

    If you think it may be helpful to talk with one of our nurses for some advice and support you're welcome to give them a call on 0808 800 4040, Monday to Friday 9am to 5pm. 

    Do keep in touch and let us know how you get on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator