Hi Everyone, firstly just wanted say what a great source of knowledge and support this site is. Thank you all.
I’m writing re. my 3 yo niece who was diagnosed with HR NB last September (2018). We’re in the UK, based in London. She has a tumour on her adrenal gland, and it had spread to bones and bone marrow. She had Rapid Cojec, responded very well, then High dose/ stem cell rescue next due to a strong possibility of losing the kidney during surgery. Again, she responded well, bone marrow was clear and there was one spot left on her skull, presumed inactive I think. They were planning to operate mid May this year, but the mibg scan beforehand showed returned disease on her skull. Head MRI showed no soft tissue or brain tissue involvement. She had two rounds of cyclo/topo which stabilised the disease but did not clear it. If it had been cleared they were planning on returning to the frontline treatment plan (surgery, then immunotherapy, then radiotherapy), however now they want to enroll her onto the new/modified BEACON trial, which hasn’t opened yet. Until then they’re doing lower doses of cyclo/topo.
My sister asked me to research other trials and treatment options. We trust the doctors here, and they have said they think the new BEACON is the best option for my niece, but we want to gather as much information and knowledge as possible in case there are more promising treatment options available elsewhere.
Would really appreciate any thoughts/ advice on this.
Many thanks, Tessa Welby