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
2: TVD
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!
I don’t know what the best option is for you but in our case (heavy disease in bone - skull, spine, pelvis, femurs etc.) we had no response to induction (frontline chemo) and had bone pain crop up during long lag after starting Ch14.18 (Dinutux) w/ I/T, while awaiting MIBG treatment. Symptoms did not respond to Cyclo/topo.
We irradiated the symptomatic areas (3 separate radiation courses to address bone pain) all the while doing Ch14.18 I/T. Ch14.18 seemed to work for a while (7 rounds) but we were not making any gains towards reducing disease. We are doing MIBG now and are hoping he can get through the lag afterwards without bone pain. Some hint of pain in the arm today but hard to tell if that is disease related (we always fear that). We have never been free of disease so are refractory HR stage 4 NB.
We harvested stem cells early on and may get SC rescue depending on counts. We are hopeful that MIBG will reduce some more of the disease since he responded well to traditional radiation. Last MIBG scan showed no new spots but persistent disease in areas not treated by radiation. We anticipate doing Hu3f8 at some point (with I/T if able). HD ICE still considered but will see how we do with MIBG. Ch14.18 worked well for a while - I believe it saved his life when we first started it, just became less effective later on I guess. We are in the US.
I understand that SJD Hospital in Barcelona used a combination of ICE and hu3f8 for the first time (anywhere) earlier this year and the early results indicate it has had an impressive impact (boney neuroblastoma) with first scan results being clear.
You never know what works for your child, you just trying to gather as much information, so you can make the best decision, together with your doctor. So thanks so much for sharing!
You have been through a lot already i can see, really hope you find your way.
I think we end up with HD ICE and hopefully get into the HU3F8 trial with GM-CSF after. Getting into the new trial with the combo of HD ICE and HU3f8 are not an option for us at this stage unless we pay ourself.
Hi Daniel,
Sorry to hear about your situation. We are in Australia and our daughter relapsed in her elbow 6 weeks after completing SIOPHEN treatment for stage 4 HR. Our oncologist recommened us for a trial with a drug called Venetoclax in combination with cyclo/topo chemo. We have now done 5 rounds and it’s showing promising results. Likely a few more rounds, then MIBG treatment then lots of rounds of CH.14 with I/T. Hope this is somewhat helpful. We felt we really had to be guided by our oncologist in this relapse phase.
Hi, Daniel. Sorry to hear that. My daughter suffered bone relapse from March last year. After 8 cycles of Chemo in China she still had 3 spots in her spine. So we came to SJD in Barcelona for Hu3f8. Thanks god she was CR after 4 cycles of immunotherapy. And as I know there are some children (bone replase) getting CR after 2 or 4 cycles. Some are undertaking Hu3F8 + Chemo. Maybe it is a good option for you. Good luck.
hi, @WittCorell , @Kelly_Chen thought that i have contact u before at early of this year. We brought our daughter to SJD at May this year for 5 round of immuno Hu3F8, frontline chemo evaluation & 2 round Hu3F8 remain CR, but relapse with 3 spot in skull,right arm bone & soft tissue near with adrenal glands.
now already did 2 IT & this week will do evaluation. Then have to decide the most suit treatment. SJD doctor recommend IT + Hu3F8 to improve the efficiency of Hu3F8. i just wonder Hu3F8 not suit to my daughter as she relapse DURING Hu3F8.
Or anyone here can recommend better options ? I have contact St Jude US for clinical trial HuCh14.18 + IT + DFMO. but SJD doctor said that Ch14.18 has not show better statistical result than Hu3F8.
I am sorry to hear this. It is a tough decision for all the parents. According to the statistics results (to Aug. 2019) of Hu3F8+IT clinic trial released by SJD, for total 32 enrolled patients, 7 CR/6 PR/ 12 SD/7 PD after 2 rounds, and 8 CR/7 PR/10 SD/7 PD after 4 rounds. You can get some results of CH14.18 in published journal articles. So contact St. Jude, MSK or other hosptial for some advices. There are other clinic trial options, Beacon or Bispecific Antibody. Be good.
My daughter has released many times now we have done hu3f8 with ice and hu3f8 with it also 8h9 and many radiotherapy s
We done over 54 rounds of hu3f8
Then entered minivan trial in UK
The. Mibg part of the minivan trial seemed to work but the anti gd2 antibody didn’t really do much and Isla has 3 new spots from Xmas Eve we are now considering the following treatment options
1 dmfo plus etoposide
This one I think is non starter
2 awaiting options from Dr mora on the 14th but only really can offer hu3f8 in combo both of which Isla has relapsed on but we hope
3 we have CT scan on Monday to see if biopsy possible to check for alk mutations then possible inhibitors
4 we are on Mibg list this time for higher dose than minivan trial as we convinced this worked at least for a while
While we wait we go on cyclo/Topo to hopefully hold chemo
What choices we have had to make and still are making 4 years after diagnosis
