The NHS is utterly failing my nephew, who is very unwell with Neuroblastoma. I’m looking to chat to anyone, from anywhere in the world, who has knowledge and experience in fighting this rare cancer.
I rarely ask for promotion but I’m rather at a loss, so please, consider giving this a boost if you feel able.
@kestral I don't know much about treatment, but I do work on the diagnostic end, with I-123-mIBG scanning. To my understanding, depending on the location of the tumour(s), it can be treated with therapeutic I-131-mIBG, assuming that they're avid.
That said, it's not a straightforward thing, may require several cycles (with attendant, massive radiation doses), isolation (depending on the dose), and lots of imaging to track it.
If it hasn't been brought up, maybe it's something to suggest?
@kestral I used to know someone who had it.
Sadly it was detected at end stage so in honor of her I hope your nephew gets help quickly....
*supportive hug if consent*
Caution: has very sad feels...
https://www.youtube.com/watch?v=3hzsrTRKRrs
Lay person here - you may want to inquire whether immunotherapy is a possible treatment option for neuroblastoma, and if so, whether there any immunotherapy trials that can be considered for enrolment.
I'm sorry about the cancer that is afflicting your nephew. I can't help directly. I'm a cancer survivor myself. Mine was a PCNS lymphoma. Lymphomas are not rare, but the PCNS kind is rare. The Leukemia and Lymphoma Society in the US paired me with another patient who had the same cancer that I had. It might be worth looking into such a service for your nephew.
You probably already know how to support your nephew, but if there's anyone who needs to know how to be a true friend, I'd suggest pointing them to this article of mine:
https://yourautisticlife.substack.com/p/how-to-be-a-true-friend-to-someone
@kestral I'm afraid I don't have any specific knowledge that cancer, but I what I can tell you is that unfortunately there are many crooks and scammers who will happily take advantage of people in your nephew's position and sell quack "cures" for vast sums of money.
So please vet any suggestions carefully.
I see someone has already replied mentioning Dr Burzynski in Texas. Do not under any circumstances send your nephew there. He is a crook.
Wishing your nephew all the best.
just ice and peas
Kestral
Easter Benny 🐇🥚
BronMason For Kamala 2024
alastair87 (old account)
tylercheung
Jerry 🦙💝🦙
Kypedsnp
Cthulku has moved
Kevin Karhan 
Johannes
jonathan rauch
Prof Prachi Srivastava
Richard Knott
Calixte
Your Autistic Life FR/EN/ES
Adam Jacobs 🇺🇦
Katja
Beeks
Mr Kneale
thene
Carolyn Stearns
just Naomi 🏳️⚧️
Marcel Michon