My son is diagnosed with stage IV high risk neuroblastoma, currently finishing 5 cycle of chemotherapy and surgery. To skip high dose chemo and BMT, I am planning to continue Hu3f8 treatment @ Memorial sloan kettering but the amount of treatment cost there is quite large, are there any alternative treatment?
This is such a tough question to get, I assume you are high risk (either stage 3 nmyc amplified or stage 4)
The hu3f8 trial appears to be opening in a bunch of centers per
From the trial it looks like it is recruiting in Indiana as well and maybe Spain. I would recommend contacting all the hospitals and reporting back here if possible. The only other option for humanized antibody is St. Judes who have humanized ch 14:18, my understanding is that treatment in St. Judes is very cheap if you can get there.
Skipping high dose chemo is such a difficult question. The reason they have 1 (and now COG are standardising on 2) transplants is cause the research they had to date showed that it significantly helped with event free survival. The problem though is that this survival does not come free, there are long term side effects and the heavier the treatment the higher the risks are.
MSK don’t really like event free survival as a metric and usually try to look at overall survival which makes comparing research a bit more complicated.
That said none of the research COG have involves humanized antibody and vaccine like they have at MSK so we are comparing 2 completely different protocols here and deciding is very tricky.
If I knew I was going to continue on MSK protocol I would highly recommend consulting with them ASAP and getting a similar chemo protocol as they offer at MSK, all the chemo drugs are widely available and that part of the protocol is very standard.
If the operation post surgery is super complicated I would recommend getting a second opinion from MSK.
So, I guess, if you want to do the MSK protocol and get hu3F8 I would recommend you follow their protocol as closely as possible including skipping transplant. Otherwise you are in some kind of no-mans land protocol wise which is not ideal.
If it is prohibitive financially to go with the MSK protocol I guess the best you can do is stay with a SIOPEN or COG protocol and consult your oncologists. Then your only big decision point will be deciding on one transplant vs 2, and there are already enormous variables there. There are not guarantees that NB will even respond to chemo and if it responds you don’t even know how well it will respond.
I know it can be super overwhelming in your shoes with so many opinions everywhere but there is no 1 answer that can fit every single case.
Are you located in the US already? What protocol are you one? Where are you being treated?
From the genetics test my son have stage 4 with Nmyc non-amplified type, is that a good news for prognosis factor?
Currently my son’s doing his treatment at NUH singpore. I’m not sure which protocol they use, what I know the use combination of CAV (vincristine, cyclophosphamide, doxorubicin) and EP (etoposide, cisplatin) in 5 cycle of chemotheraphy. The PET CT scan results after 4 cycles shows excellent response. Now I’am waiting for the scan and Bone marrow test results after the 5th cycle.
Already contacted and send his medical records to MSK.
MSK already give the recommendation to go straight to 5 cycle of Hu3F8 treatment without high dose chemotheraphy and bone marrow transplant. But they require everything to be deposited in advance before starting treatment in U.S. I have to decide wether can make the deposit on time or continue to collect stem cells and proceed to high dose chemo at NUH singapore.
thanks for all the answers i found here guys. but a quick answer to the question it is safe to skip high dose chemotherapy and BMT i can say: it is never safe to keep high dose of chemo but stage IV is not safe either. as other people suggested, try to search for the best alternative. good luck!
Hi Fahiem, my son was diagnosed with NB stage IV with NMYC amplified in July 2015, and he has gone through all treatments (Chemo, Surgery, BMT，RT and Isotretinon for 6 month) in Singapore KKH. My son completed the treatment in Jun 2016 and so far all the three month check up is fine.
I believe both NUH and KKH follow COG standard for Neuroblastoma treatment, with is CAV+PE 5 chemo for stage 4 patient. for your case I am not sure whether Dr. Miriam suggestted you to do BMT or not. but MSK 3F8 do have an advantage that patient is not required to do the BMT before the 3F8 (if patient choose CH14.18, they need to complete BMT and RT before processing the CH14.18).
at the moment, 3F8 is available in several places which operated by doctor came directly from MSK. I will suggest the Spain Hospital Sant Joan De Deu as I have several China Neuroblastoma patient friends are doing the 3F8 treatment there. Compared to MSK USA, the 3F8 treatment fee in Spain is acceptable, estimated 300-400K SGD.
feel free to contact me and I would like to share more information with you. Hope your little buddy can recover soon.
Hi Bahasuan. My son is in the similar situation. Diagnosed(14 months old) as Stage IV with NMYC amplification. It seems he achieved CR after Chemo and Surgery. We contacted Barcelona with Dr. Mora. But they don’t enroll first remission patient except with residual disease in bone or bone marrow.
Hi, I already contacted the SJD hospital in barcelona, and the hospital proposed Hu3f8 treatment for my son without the high dose chemotherapy and Bone marrow transplant. By the way is there any significant difference between nmyc amplified and non-amplified on stage IV neuroblastoma?
AFAIK the biggest factor to keep in mind is how well the tumor responded to frontline chemotherapy and how much is left after surgery.