First of all, thanks a lot for creating such a form. It has helped us in so many ways.
My name is Emma and my 3 years old daughter was diagnosed with Neuroblastoma stage 4, non-MYNC amplified last May. Since then, she got 6 cycles of chemo, a tumor removal surgery and she had high dose chemotherapy and bone marrow transplant a week ago. She will be getting radiation therapy soon and then immunotherapy.
I was wondering if anyone could tell us what we should expect from immunotherapy as it seems very different from chemo.
Thanks for your time and sending very positive vibes to all of you and little ones who are beating this monster like a champ!
Sending you best wishes from Australia.
Regarding immunotherapy there are quite a few protocols out there many of which differ in what you have to expect.
Doctors are usually quite cagey about telling you what to expect cause not only does it depend on the protocol it also depends on the child, some of the kids cope quite well others struggle a bit more.
The great news about immunotherapy though is that we don’t know of any negative long term bad side effects. Our warriors are back to their normal selves a few days after the final dose in a cycle.
There are quite a few different protocols this is more or less the most difficult on the children to the least:
- COG IL2 + CH14:18
- SIOPEN CH14:18
- SIOPEN CH14:18 Long term infusion
- MSK GM-CSF Hu3F8 (wide clinical trial is running now).
(also humanized CH 14:18 at st Judes and I think they still treat with 3F8 in Singapore - non humanized)
Hu3F8 is a bit of an outlier in what to expect cause you don’t even need to stay overnight in hospitals for this treatment, afaik they are able to do the infusion in about an hour. A large reason we have so many side effects during immunotherapy is due to HAMA (human antimouse antibodies) which means we have to restrict the amount of antibody we give to minimize side effect.
We had SIOPEN CH14:18, it usually involved about 1 week hospital stay during which we got antibody every day for 5 days in a 10 hour infusion. Shalev was quite irritable during it but pain was controlled with a very strong cocktail of meds. Some kids did better, some did worse, some retain TONS of fluid I heard of one 10 kilo kid that would gain 5 kilos of liquid during immunotherapy.
At the hardest treatment the kids getting IL2 + CH14:18 can in some rarer case stop immunotherapy altogether due to side effect. LTI (long term infusion) kids are often sent home with the pump.
Do you know exactly what protocol you will be on? Which hospital are you being treated at?
This is Alex from Singapore.
As your child is having BMT and will have Immunotherapy after RT, so I assume your child is under stage IV high risk group.
based on the statistics, the 5 year survival rate of stage IV high risk group is 40-50%. However, CH14.18 immunotherapy can increase the survival rate to 60-70% based on past clinical trial result.
3F8 is another Immunotherapy developed by USA Memorial Sloan-Kettering Cancer Center (MSKCC), it is still under clinical trial but it is now available not only in USA but also in Spain with affordable price. It seem to be a better immunotherapy but no statistics to prove it yet (as still in trial stage).
you can check with your doctor to find out which Immunotherapy to be used first. if you have more question can come here to ask again.