BEACON for relapse or alternative trials?

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

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Please please try your best to just get onto immuno-chemo treatment plan asap, whether it be through beacon or elsewhere. We have been waiting for trial to open since April and been on cyclo+topo to keep her stable. Found out today daughter has progressed. Wish I’d raised funds to get her abroad. Lots of regret on my part. Good news for you, I hear beacon trial is due to open in 2 weeks approximately. I could be wrong. Best wishes and prayers and I will sincerely pray you aren’t in our situation. Xxx

Thanks so much for your reply and advice Sumera and my heart goes out to you. I’m so sorry you had this news today. Hopefully Beacon will start in two weeks…GOSH told us there are lots of children waiting and that they’re waiting for just one institution to sign off on it…there must be so many anxious and frustrated parents and doctors out there right now.

Will they continue Aleena on cyclo/topo or try another drug now?

Thanks again and sending all best wishes and hugs at this difficult time xx

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Thank you. In the UK I believe the beacon trial is best option. Immunotherapy alone isn’t as effective as when combined with chemo.