My daughter has relapsed NB stage 4. I already write a post about our case and mutation PIK3R1. We are from Kazakhstan. We have no metastases, just made surgery to delite some outstanding part from brain. And now we have two options: 1. Proton Therapy and immunotherapy by Dinatuximab Beta (Quarziba). Immunotherapy here we could recieve free of charge (using local fundation). 2. Proton Therapy and immunotherapy by Naxitamab (Danelzya). This option is not available localy so we will need go to Europe and it will cost around 300K Euro. Taking into consideration that we will spend for Proton Therapy around 150K Euro we have a doubt now. Should we use our budget for Proton Therapy and then take Quarziba, or make Proton Therapy more chipper and use our budget for Naxitamab in Europe. Our doctor said that difference between Quarziba and Naxitamab is only in pain side-effect and they insist we do immunotherapy with Quarziba. Thank you in advance for comments.
Unfortunately nobody can give you a firm reply to this question, because no study that directly compares the 2 antibodies has been conducted yet. The only thing that is certain is that since we are talking about cranial/head radiation the choice of proton over standard photon is the one that makes more sense, so the first half of your money will be well spent.
Concerning which antibody to choose, I assume that she already did Qarziba during frontline. Generally speaking, when relapsing after receiving a certain chemo drug or antibody, a rational approach is to try a different one (Danyelza in your case), however if I understand correctly this is a brain/CNS relapse, and anti-GD2 antibodies do not cross the brain barrier, so it’s possible that Danyelza wouldn’t prevent this either.
A huge factor would be whether spending so much money on Danyelza exhausts your entire budget or not. It’s a very large amount that may leave you with no further options later on for maintenance or any other form of therapy that may be needed, and of course being in your home location is not something to be underestimated.
A very good summary of the 2 antiGD2 approaches and their main differences can be found here:
Sorry for not providing a more specific reply, but this is a case where literally no one can be certain about whether it’s worth it or not. Good luck in anything you choose.