My name is Zhanara. At oct 2020 my daughter (on that time she was 5years) was diagnosed NB 4stage in abdominal are. We made treatment in Turkey and it was successfully finished on june 2021. After one year in December 2022 there was found tumor in her head and was made urgent operation to clean it. After biopsy was made genetic test which showed mutation gene PIK3R1. Our doctor said that it is very rare kind of mutation and she is searching the Target medicine for this. If anyone have any information about such case I will be very appreciate. My daughter now is almost 8, after operation we finished 3 courses of chemo (Topotekan, Etopisit and Ciclophosphomed) and now we need to rest. And we need to find any chance. Thank you jn advance.
Have you tried contacting sant joan de deu children hospital in barcelona? They have neuroblastoma expert dr. Jaume Mora
Yes we waiting from them reply. Alredy sent them all information.
As far as i know they have an immunotherapy tratment for brain relapse. All the best wishes for your daughter.