I have been browsing (unfortunately) through this great forum and read a lot of your stories. My son has stage 4 NB mycn-amplified with incomplete resection approx 50%. Since the surgery we had radiotherapy to the tumour site and apparently we have not progressed so we started retinoid acid and then will get immunotherapy. I guess I just wanted to hear other stories when tumour was not taken out completely and where did it lead to. The mibg scan still lights up on tumour site but consultant says it does not necessarily means its active cancer… Also, does that disqualify us from bivalent vaccine since we still have not got clear mibg (NED) prior to immunotherapy?
Thanks for welcoming me to the group x
Hi Eliza, you can contact the doctor about your boy’s situation. There are some kids with MIBG light spot undertaking immunotherapy treatment (Hu3F8). But the immunotherapy is good at deal with bone marrow problems but not enough effective for the soft tissue lesion.