Child Age 6, Wales, Relapsed CNS Neuroblastoma

(Ben Hayes) #1

Hi, My son Morgan Hayes was diagnosed with stage 4 Neuroblastoma that had spread to his bone marrow in February 2015 and gained full remission using the following therapy’s

Immunotherapy (Anti GD2)
13 - Cis-Retinoiac acid

Soon after completing his immunotherapy at Bristol children’s hospital in England he relapsed. Tumors formed in his Central nervous system/ Spinal cord. He almost lost full function in his legs and also couldn’t urinate. Following 34 sessions of radiotherapy he has gained full function in his legs. Hes due to start a dose of chemotherapy with cyclophosmide and topetecan. I was wondering if there were any trials or any treatments available for my son


(Michiel Coene) #2

We are currently looking into treatment with Burtomab, which is specifically designed for these cases. Downside is they only give it at Mskcc in New York., as far as we know. Our doctors are looking into it. Ymabs-announces-positive-topline-result-in-pivotal ( licensed to produce Burtomab) has a European office, but it remains to be seen if they are willing to provide it in Europe.


(Sam Saffron) #3

One thing to keep in mind is, that as far as I know, they expect to do a stem cell collection prior to administering the immunotherapy. So probably a great way of cutting down costs would be to do the stem cell collection back at home hospital. I would definitely recommend contacting MSKCC as soon as you can for all the details.

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(Michiel Coene) #4

Our doctors did, but I don’t know if they had any answers yet.


(Tomica Tomek) #5

Dear Ben
I was not been here for while.
Did you find anything for your child
I hope everything is ok