living with persistant pain after Hercetin

Hi I’m 47and feel like 97! I’m new on here and probably doing it all wrong! 

I had my last Herception in February 2015. During my treatment I started having stiff joints which I was warned about. But, my legs was the worst affected, they have not gotten any easier and it is a constant battle day to day, I really don’t know what to do any more, I speak to my GP at least once a week  I have been on all sorts of medication included pain patches. I have had lots of x-rays there seems to be nothing I can do or anything the doctors can do. I have even done some meditating which I do think calms me down but only during it! 

Can anyone please help me or at least let me know I’m not on my own! 

I’m rubbish with technology and research! 

Please help  x 

Hi Tracey4, 

I am really sorry to hear you have been going through this pain. I am sure some of our users will be along soon to offer you some support. 

You may also want to take a look at our page on Herceptin.

In the meantime please do call our helpline at 0808 800 6000 who will be able to talk to you about Herceptin, the side effects you are experiencing and offer a friendly ear. The opening hours are below.

Monday-Friday, 9am-5pm
Late opening Wednesday 9am-7pm,
Saturday, 9am-1pm

Best wishes,


Hi Tracey

I was diagnosed in 2012 and had 15 cycles of herceptin, I couldn’t endure the full 18 because of toxicity. It is 3 years this month since i finsihed herceptin and I am still in pain.

I have had scans, constant blood tests but nothing can be found. My pain is around the side of my ribs on my cancer side, up along my shoulder blade and in my upper arm.

I am on the physio roundabout again suggesting it is soft tissue damage as of course the medical profession won’t want to consider it is herceptin.

I am on the Persephone trial for ten years as they don’t have enough long term data about long term effects. 

So I don’t have any words of encouragement but I can tell you that you are not alone. Two of my friends just had 9 cycles of herceptin and neither have any long term problems.  After number 15, I was just crying with the pain in my upper back so the onc stopped it.

Saying all that, I am now 4 years clear so am still glad herceptin was there for me.


Pixie x