My son relapsed in left arm 1 x 1 cm spot ( Bone ), 3 weeks later a small spot in his right leg ( Bone ) and now his legs started to hurt a little,
so we of course fear the worst.
We have Scans on thursay.
Since relapse we have done 2 cycles of Topo/Cyclo while we were waiting for the BEACON 2 trial to open, but its still not open and nobody knows when its gonna open, and our doctors wants to start him on treatment friday next week. ( If we have good response on Topo/cyclo i guess we continue on that )
I dont think we have time to wait for getting option 3 through, and leaning towards HD ICE followed by option 3 or 4 and then radiation - if clear after that then DFMO.
SO - we are left with more or less 4 options right now.
1: HD ICE
3: Dinutuximab beta with I/T - BUT … we live in Denmark, Europe where this option is not available, but i might fight for it and get it through because our
Medical counsil have said that Dinituximab also are for relapse. I might take some time to get it through and our doctors are not convinced, and missing data
showing effect. On the other hand, they say that BEACON 2 is the right thing to do in our case - and that trial has Dinutuximab beta with I/T and favors it 2:1.
4: HU3f8 with GM - this is only a option if Topo/Cyclo didnt do anything, and im no sure this is the rigth thing to do as the first thing.
A few questions pop up:
HD ICE - is it succesfull with boney dicease?
HD ICE - Do you always need stemcell rescue, and should we opt for harvest stemcells before we start it.
Any other recommendations?
As always thanks for your help navigating cancerland!