Does anyone have experience with Memorial Sloan Kettering as an international patient? We are planning to go and participate in the bivalent vaccine trial following completion of our son Marko’s frontline therapy for stage 4 HR NB (COG protocol in the Royal Children’s Hospital in Melbourne, Australia). The estimated costs for the trial are naturally astronomical (we were told about $400,000 to be paid upfront), but were advised it is possible to negotiate them down significantly if we use a “broker”. We have no first hand contacts in the US so not sure how to start searching for a reliable one… to be honest not even sure what this would entail. Anyone able to offer advice? It will be highly appreciated!!!
I would start by contacting the two principal investigators of the bivalent vaccine trial Dr. Brian Kusher and Dr. and Dr. Shakeel Modak. Go to the website to get their contact information. I haven’t heard of a broker before but if there is one they should know about them. I wish you the very best.
If you are looking for advice here I strongly recommend you contact @ludwinski and https://solvingkidscancer.org I am not sure what the status is today, but I have heard of some cases where they accepted home scans.
For context (we had a rather complex case requiring a bit more scanning) but one round of scanning cost us about 50k US, and you have one every 3 months! So that is easily 200k USD ins scans alone.
The cost of scans is beyond ridiculous at MSKCC, but they are exceptionally thorough, so at least there is that.
Thank you Frank and Sam,
I’ve contacted Dr Modak and his team, but was advised they do not handle finances and was instead referred to the international office. I’ll contact them today, but was told by other people who attempted the same route that without a broker we are likely to be charged premium prices for all services. At any rate, at this stage just need some estimates from MSKCC as we need to apply for fundraising registration to be able to start a fundraising campaign. Marko’s only finished his second round of induction chemo so there’s still a long way to go until we get to the vaccine stage…
If you are this early in the process you can also investigate the possibility of getting hu3F8 , it will be years before the stage 2 clinical trial publish all the results, but what we know for sure is that the antibody is both more potent and with significantly less transient side effects than non humanized ch 14 18
There are now trials all over the world for hu3F8 but sadly nothing in Australia yet
Thanks Sam – Jelena please feel free to email me at firstname.lastname@example.org and I am happy to help in anyway I can.
Many thanks Donna, I’ll email you later today to discuss!
Thanks Sam! Yes, I’ve done lots of reading on the subject and it does appear superior to the COG protocol as far as late side effects are concerned. We’ve had a long discussion with our oncology team, but it seems this option us just not feasible at the moment. Firstly - there’s the financial aspect as the whole MSKCC protocol + the vaccine would cost over a million, secondly given how aggressively Marko’s cancer in behaving we cannot delay any frontline treatment. MSK are using different induction chemo regimen so I think we cannot just go on to their immunotherapy after the induction COG protocol - it would not have the same effect.
We think the most rational thing to do is finish the COG protocol in RCH with a tandem transplant (just thinking about it makes me shiver), and hoping Marko will be in remission try the vaccine. We were also told that RCH is currently negotiating DFMO with the US team and potentially it could also be available in Australia by the time Marko finishes the protocol. We’re thinking about giving him this as well prior/after the vaccine.
I see, I have heard of MSK taking in people after COG frontline chemo, I think it happens quite a lot. But yeah… costs for us aussies are prohibitive. Regarding DFMO you will have to do it after Vaccine if you choose to do it, not before. MSK are strict about timing for the Vaccine.
Wishing Marko you and family the best of luck during this very challenging process.
Thank you very much! I truly appreciate all your help and advice - there’s a lot to take in, but we’ll all get there eventually