Hi everyone,
been reading all the posts about herceptin and it’s been a great help so firstly Thankyou for sharing ladies, I know it doesn’t change the physical of how we are feeling but it stops you feeling like you are the only on that is going through these god awful symptoms. I have just been told my heart results have dropped agin after my 10th of 18 herceptin, they stopped treatment as I was struggling g with breathing through radiotherapy. I’ve since got extreme joint/ bone pain neck, base of back, all fingers and toes and knees and hips! I am convinced it’s herceptin but the onco said it was due to being in menapuse which at the time made me feel like lamping him!! . Since reading all your posts I know I was right!! Why are we made to feel like we are the only ones experiencing these horrible side effects!! I feel like it’s a conspiracy to keep us quiet!! They prescribed razoprill and said to continue with herceptin but there is reall evidence to suggest that long term use of herceptin has no benefits. Had anyone been given other options, like reducing the dosage or going on tablet form? What’s everyone’s opinion on this? And why do we have it every 3 weeks Instead of once a week in smaller doses like say in Finland? Also I was hoping for Feb back from ladies that have since finished herceptin who are back to ‘normal’ amd are getting on with tamoxifen as that’s the next hurdle to jump!! My fear is there aren’t any!
Love amd hugs to everyone that is suffering, thinking of starting a Facebook support group to get this out in the open more, maybe we will be listened to and taken abit more seriously if it was in social media! Xx