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Exemestane for Breast Cancer after care

(41 Posts)
soop Thu 26-May-22 15:46:44

Do any other Gransnetters take this medication? I have developed some troubling side effects. Would be grateful of any input. Thank you.

teabagwoman Thu 26-May-22 16:27:06

I was taken off exemestane because I developed joint pains but we were never sure if they were down to that medication as I went on to develop other problems.

If you aren't already in touch with a Maggies you might like to try their online centre. They answered any questions I had very helpfully and didn't just stick to the NHS script. Can't recommend them too highly.

AGAA4 Thu 26-May-22 16:30:36

Contact your breast care nurse. You may be able to get your prescription changed.
The antiestrogen drugs can cause problems.
I had problems with letrozole and I was given another brand which I got on with much better.
I hope you get your problem sorted soon.

Kateykrunch Thu 26-May-22 16:40:09

I take an Aromatase Inhibitor called Letrozole, your medication is an AI I think. I have taken Letrozole for over 4 years and have to admit the first 18 months were a struggle due to side effects (joint pain, dizziness, fast heart beat, breathlessness, feeling sick). I no longer have the joint pain. I had invasive breast cancer which was highly oestrogen positive, so didnt have a choice really but to keep taking them. I know that different brands have different side effects, so perhaps worth a change of brand (active ingredient is the same but different brands use different fillers). Hope this helps.

soop Thu 26-May-22 16:45:25

Thank you for your personal observations. flowers
I have just spoken with my breast care nurse. She says to stop the med for five weeks. After which, the consultant in Glasgow will phone me and, if necessary, change the medication.
Letrozole was problematical early on post mastectomy. I also have six monthly Zoledronic Acid infusions. These are no trouble. Just a wee ache in the muscles for a brief time.
I am itching , itching, itching...but the main problem is the hourly trips to the loo for a wee, especially throughout the night. I am permanently tired.

soop Thu 26-May-22 16:46:44

I value your opinions. Thank you.

Sparklefizz Thu 26-May-22 16:48:56

I had 4 different drugs over a 4.5 year period post mastectomy. The side effects of each of them were horrible, and each time they became unbearable, I was changed onto a different one.... and then experienced different side effects. I took Tamoxifen, then Arimidex, then Toremefine, then back onto Tamoxifen again.

Eventually after 4.5 years my consultant said they had done their job and I could stop them. It took about 2 years to get the side effects out of my system, but I was also coping with other illnesses, so it was hard to tell what was causing what.

soop Thu 26-May-22 17:05:12

Sparklefizz My heart goes out to you. flowers

Sparklefizz Fri 27-May-22 09:46:25

soop How kind, thank you.

Jane43 Fri 27-May-22 10:02:18

It seems to be an oestrogen blocker. I took Anastrazole for two and a half years after a lumpectomy and had terrible side effects, constant hunger, bad pains in my legs and ankles, weight gain and sleep disorder; my prolapse is also considerably worse. It also seems to have adversely affected my bones which the oncologist said was a side effect. I did some research and found that it only gave a 7-10% protection against cancer recurrence. I spoke to one of the nurses and decided to come off it as I am 79, the cancer was small and only Grade 1. I feel so much better, sleep well and have lost all the weight I put on. Of course this was a personal decision and everybody’s case is different but for me stopping the drug was the right thing to do. I hope you can find the right course of action for your situation and that you feel better soon.

soop Fri 27-May-22 12:50:58

Thank you, Jane43 for your message. My cancer was grade 4. Hence the mastectomy. The Zoledronic infusions are meant to boost bone strength. You made a well informed decision based on your case. I was told that I needed to take the meds for 10 years. There are a further eight to go. My mother had a double mastectomy for the same cancer. Sadly, it was too late to save her life. I've a five week break until I next speak to the consultant. Last night, I was still awake at 2 a:m. The itching/bee sting sensation and need for constant wees brought me close to tears.
I've recently had a colostomy for a troublesome ten year rectal prolapse. Thankfully, I feel fully recovered and so much happier as a result.
It's difficult to "open up" without sounding wimpish. I am grateful for the information shared on this forum.

Jane43 Fri 27-May-22 13:20:00

Soop, from what you have said your case is very different from mine, I was lucky with a tiny tumour found after a mammogram which was only Grade 1 so any medication to help prevent a recurrence is more important for you than it was for me. After your break of 5 weeks hopefully a drug that suits you better can be found. I will be having a Zoledronic acid infusion soon so I am encouraged to hear that the effects of these have been minimal for you.

soop Fri 27-May-22 14:04:27

Thank you, Jane43. Zoledronic acid infusion makes my muscles ache a little for a short time. It does what it's meant to do...strengthens bones. A very good thing. Best wishes.

growstuff Fri 27-May-22 20:20:12

Following this topic with interest, as I've been told I will almost certainly be prescribed an AI after my cancer op.

V3ra Fri 27-May-22 20:33:41

soop do you take a one-a-day antihistamine tablet at bedtime?
I'm currently battling with a recurrence of eczema as a side effect of my Covid booster last November. Apparently the body's cortisol levels rise overnight which causes the itching which disturbs sleep. Taking an antihistamine at bedtime can help with this.

soop Sat 28-May-22 12:46:02

V3ra I shall most certainly do as you suggest. Many thanks. smile

growstuff It helps to share. My best wishes to you. flowers

Sweetpeasue Sat 28-May-22 13:44:21

I am very lucky not to have breast cancer Soop but wanted to offer my sympathy for your constant nightly loo trips to pass urine. Having Interstitial Cystitis for many years I had to go at least every hour too. It's exhausting for you and deeply frustrating, a constant torment. I'm so sorry. I knew of your prolapse bowel operation but didn't realise you had also had breast cancer. I'm so very sorry, you have had such a lot to bear. I'm sure you've checked already that there is no UTI. I hope you get these issues sorted soon, you need your sleep. Many good wishes for your complete recovery. X

growstuff Sat 28-May-22 13:50:06


V3ra I shall most certainly do as you suggest. Many thanks. smile

growstuff It helps to share. My best wishes to you. flowers

Thank you soop. I must admit it's not a journey I really want to take, but I guess I'll just have to make the best of it. It helps to know what to expect.

soop Sat 28-May-22 15:03:29

Sweetpeasue Thank you for your kind words.

growstuff I have a splendid "pretend titty". To be honest, I have had no qualms since the mastectomy. It is what it is. smile

hulahoop Sat 28-May-22 22:24:17

I have just stopped taking letrozole for a few weeks my nurse agreed that it may be causing the frequent urine infections I have had since starting it !I have also started Adcal I have osteopenia nothing comes alongside it .

hulahoop Sat 28-May-22 22:25:32

Should say nothing comes alone does it .

growstuff Sun 29-May-22 00:05:05


Sweetpeasue Thank you for your kind words.

growstuff I have a splendid "pretend titty". To be honest, I have had no qualms since the mastectomy. It is what it is. smile

At the moment, the plan is to have a reconstruction at the same time as the mastectomy, but it all has to be confirmed.

soop Sun 29-May-22 14:16:19

hulahoop I also take Adcal. A bone protector. If the frequent trips for a wee persist, I shall take a sample to the surgery. It may be that there is an infection.

growstuff You are not alone. We can give each other reassurance. That is a blessing. flowers

soop Thu 02-Jun-22 13:12:09

Confirmed UTI and antibiotics prescribed. Have managed to buy some Piriton. Thank you for your suggestions. smile

hulahoop Mon 06-Jun-22 16:24:17

Hows it going soop I have not had urine infection since stopping letrozole and I am sleeping better .I also have 2 pretend boobs.