Has anyone stopped taking post-chemo tablets?

Hi All,

This is my first post and I’ve registered specifically to ask a question on behalf of my mum.

My mum was first diagnosed with breast cancer when she was in her mid-30s, for which she had radiotherapy and cancer nodes removed. Ten years later (almost to the day when she’d been told ‘after ten years clears you’re cured’) the cancer returned to her left breast and she had a partial mastectomy, remaining nodes removed and her first chemotherapy. Afterward, she took Tamoxifen and had an immediate, violent reaction to the drug (came out in full painful torso rash) and stopped taking them. Another ten years down the line she was diagnosed with secondary bone cancer and was put on Arimidex, supposedly the ‘Rolls Royce’ of cancer drugs. At this stage we all knew it was about keeping the bone cancer in check and out of her major organs and long bones. However, a year later, while still on Arimidex, mum discovered a lump in her right breast, and a second quickly appeared in between finding the first one and getting a hospital appointment. So, last October, she had another mastectomy and she has just finished her sixth and final chemo treatment. As with the first time she had it, she has suffered terribly with vomitting, constipation, bloating (plus a whole host of other symptoms, including gout for the first time!) and she lost all her hair this time as well.

My mum is incredibly strong and an inspiration. She has undergone all this treatment over the last 20-odd years (she’ll be 60 this year) so that she could be here for me and my sister. But she hasn’t felt like herself since her first radiotherapy treatment and it’s only become more debilitating with each round of chemo. She had to think long and hard about whether to start another round of chemo, knowing how ill she would be, as she would rather have another five good years with us where she felt well, than five years with the minimum two and a half to three year recovery period before she feels anyway like herself again!

There is no previous family history of this disease in our family and my sister and I have both had a gene test, which was clear. Mum’s cancer has always been hormone positive, which she puts down to being on the pill when she was younger. She had a terrible reaction to that and generally her body doesn’t seem to react well to any kind of synthetic drug. She has been told that she will have to resume the Exemestane/Aromasin tablets she was prescribed after her operation last year. And, at this time of her life and with all of the above history, she is wondering whether to bother with the tablets any more, as these also make her feel bloated and we have read will only make her joint and bone aches and pains worse. She has never been one to take lots of tablets anyway, and with the best will in the world, there’s no point in suggesting taking more tablets to try and combat the side effects of the Exemestane/Aromasin.

She has an appointment with her oncologist tomorrow (I know I’ve left this post a bit late, but I’ve been scouring the internet for an answer rather than post the question myself), but has anyone else decided to stop taking their post op treatment?

I would be grateful for any experiences you can share.

Thanks
Jane

Hi Jane,

Welcome to the Breast Cancer Care chat forums, you’ve come to the right place for help and support. I am sure your fellow forum users will be along shortly to try to answer your questions and give you some much needed support.

You may find it helpful to give our telephone helpline a call and have a chat with one of the nurses here who will be able to talk to you in detail about your concerns. The helpline is open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm, the calls are free and the number to call is 0808 800 6000.

Hope this helps.
Jo, Facilitator

bump

as you want a quick reply I think you should post this in “secondary breast cancer” too

sorry I have no experience to help you with good luck FB xxx

Hi Jane,

I was on Arimidex for 4 yrs, and stopped it in consultation with my GP, 4 weeks ago because of excruciating left hip, left foot and hand pains. The pain in my left hip and foot has almost gone and I am now sleeping through the night, rather than waking every 2 hours in pain.I can also walk properly, rather than hobbling on my left toes!

I am also taking Alendronic Acid to prevent further bone loss (I am considered osteopenic) and both drugs can cause bone/joint pains. During the 4 weeks lay off of Arimidex I have still been taking the Alendronic Acid, so am pretty sure the pain was due to Arimidex.

I am seeing my GP on Wednesday for follow up and shall ask for a referral to an Oncologist (mine discharged me after chemo and rads and retired last year) to see if perhaps I can go back onto tamoxife, which I was on for only 2 months before being switched to Arimidex. It is 5 yrs now since my dx and I have no secondaries thankfully or recurrence. I am 63 yrs old and like your Mum, would rather have whatever is left of my life, without debilitating pain, han suffer the last 3 yrs. I’ve not read of any drugs to combat the side effects of the AI’s, but as I haven’t seen an Oncologist for 4 years, there just may be something that can help.I can’t take normal pain killers as I have Crohn’s from mouth to anus and they could cause internal haemorrhaging.

Don’t know if this will help - I will be interested to learn how your Mum gets on tomorrow, if you could respond.

Take care, both…
Liz.