Afinitor 10mg and exemestane 25mg update

[Julie2233]

Thank you to everyone who responded to my previous post and gave me loads of really useful information. It real made me feel that the situation wasn't as hopeless as it felt.

I've also had a break through of my own that I wanted to share with you just in case it works for someone else.

I've done my first 4 weeks on the new drugs and it was absolutely awful. To be perfectly frank I felt as ill as I had when I was on TAC chemo. It stated within 12 hrs of the first tablet and just kept getting worse.

I've just started my second packs of tablets but I've changed the brand of the exemestane, doses remain the same. I started the new brand on Monday night, Tuesday morning I was back to myself.

The hip and back pain, mouth ulcers, foul taste and dizziness gone, appetite and energy back. Still feeling a little nauseous but that's improving. The depression has also lifted and hot flushes reduced.

The same happened when I was on tamoxifen, had awful side effects which improved when I changed brand. I've spoken to a friend who is a pharmaceutical rep and there is scientific reasons for this which doctors don't seem to know about.

[Julie2233]

It's not a name I recognise. The manufacturer is EirGen Pharma of Waterford, Ireland, distributed by Rivopharm.

There are lots of different manufacturers though.

When I was on tamoxifen I couldn't take a well known brand that many other women tolerated without problem, it seems that we all have different sensitivities.

[Rbeth]

I have had the same experience with Letrozole. Don’t use any medicine made in India. There have been reports of medication having carcinogens - just what we need!!

When I took arimidex and went to the generic an Anastrozole I got very ill.

Thanks for reinforcing taking charge of your own treatment. Thanks to all. Reenie

[Lovemylakie]

I am on my 5th day of Afinitor and Aromasin and the mouthwash. So far nothing to awful. I am a wee bit more tired but I just rest (still lay down for 3 hours each day). I am a bit more short of breath but I have 3 tumors in left lung. Sometimes I am dizzy after the mouthwash and I have a yucky taste. I am sorry that you had such a hard time. It amazes me how we all differ from the side effects. I wonder why that is.

Hugs

Robin

[Julie2233 in reply to Lovemylakie]

Really glad you are getting on ok with the meds. I was thinking about why we all react so differently as I was driving home tonight.

I've always had one of those bodies which over reacts. Before my diagnosis I'd spent years avoiding common drugs like antibiotics, as one course of penicillin would give me a dozen other problems most worst than the problem the tablets were prescribed for!

My TAC chemo was stopped because the antibiotics made me so ill, not because of the chemo!!!

After changing the brand of the aromasin

the only problem I seem to have left is lack of appetite and nausea, but I desperately need to lose a few lbs so I'm quite happy with that one 😊

Jxx

[Lovemylakie in reply to Julie2233]

I have gained 30lbs so I joined weight watchers and have lost 7.5lbs in 4 weeks.

Robin

[Julie2233 in reply to Lovemylakie]

Well done!

I’ve gained a similar amount of weight since starting treatment in 2016! Every treatment and drug i’ve had has come with the side effect of weight gain! Jxx