Relapse HRNB Post SIOPEN HRNBL 1.7


#1

Hi - our 6 y/o daughter relapsed 9 months after completing Frontline treatment. She had refractory disease post induction so did TVD, following surgery she did BuMel and SCT. NED post radiation and went on to complete Immunotherapy with IL2. Relapse was widespread bone disease. She started on temozolomide immediately and has completed 3 rounds and has had excellent QoL. She is due MIBG scan next week and we will see if any change in response to Temozolomide. So my question is - if we see response what options would be available? We have looked at MIBG therapy and LuDo and we have had some early discussions on immunotherapy. Given that we are in Ireland - what other options are available in Europe or what else is on the table in the US?


(Mark Liu) #2

hu3f8 in spain or haplo sct in germany… or mskcc in US with enough budget


(Sam Saffron) #3

Sorry to hear about the relapse @pearsona wishing you the best.

hmmm why would that be a special option? I assume haplo is a last resort if no 10/10 donors are around and no sibling matches and transplant is needed. That is a lot of ifs.

I would definitely explore this, hu3f8 is significantly more potent than ch 14:18, they are able to give much higher dosages with significantly less side effects.

Other thing I would consider is a full DNA panel in case there are some targeted drugs on the table.