Hi
Desperately looking some support and good stories. I was diagnosed back in September 2025 with Grade 3 lobular and spindle cell, triple negative breast cancer (then upgraded to stage 4) with bony mets.
I only did one round of paclitaxel and pembrolizumab in November and the pembrolizumab gave me grade 3/4 toxicity of liver and dermatitis for which i was hospitalised for 10 days in December, was given high steroids and MMF (transplant tablet) to try to control immune system. Had to wean off prednisone and it took almost 3 months, no treatment could be given because of steroids. Then finally almost had me off the prednisone and after my weekly liver bloods they had shot up again. So hospitalised again for 3 weeks and had to start all over again highest dose steroids, MMF & now a third line immune suppressant for liver, then told I have also thyroiditis and will have to take levothyroxine for life. My cancer lumps are extremely painful and I cannot take anti-inflammatory tablets, paracetamol only thing that works, opioids do nothing for my pain.
My biggest worry is no chemo for another couple of months until they sort all the "itis's" out and wean me off tablets. My lumps are getting bigger in my breast and they have offered radiotherapy for palliative reasons. Can someone please tell me they have been here and everything will be ok.
Many thanks, Karen
