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.
Im sure you’re way past this now, but my daughter also did not have her full tumor removed since it was considered ganglioneuroblastoma and was too close to her sympathetic nerve. They only removed the part that has active neuroblastoma pockets. She is 23 and has been NED since 2000, so dont give up hope.
Im sorry I cant speak to your other question.
Thank you very much for your reply. I am really glad there are positive stories in this cruel disease.
My son is still well, now in metastatic remission and finished treatment a month ago. Some parts of the leftover tumour is still avid on MIBG but drs say there is nothing to suggest its active, its been stable for over 6 months. I am guessing in your daugher’s case they removed all that is avid in MIBG?
Its a shame its still avid in my son’s case but I am hoping it will eventually stop coming up on a scan.
But your daughter story gives me hope he will just live with mass he has and it will be the end of our story with cancer.
The portion of the tumor that was left still showed up on scans (and still does), but remained dormant. I’ve never felt comfortable with that portion left inside of her, but it was too risky to remove it plus it was the benign portion of the tumor apparently.
I hope so too.
Sorry for the delay in my reply.
Any changes? updates?
My son is still well nearly 3 months post finishing treatment. Waiting for a routine check up and hoping for no change. No news is a good news Sending best wishes to your family x
Thats great to hear!! Thank you!