SIOPEN Outcomes

Has anyone had the chance to discuss this recent statement by the UK Children’s Cancer and Leukaemia Group with your specialists? Very encouraging results for children who achieve first remission with “standard of care”.
I asked Dr Modak from MSKCC to clarify the implied issues with the bivalent vaccine trial design, but he did not wish to comment “on other’s views”.

SIOPEN HR Neuroblastoma Oct 2019.pdf

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It is very frustrating they are dismissing vaccine like this when Dr. Lode who is pretty senior at SIOPEN has repeatedly said that the natural next step is trialing vaccine and that the main thing holding him up from doing this is money, not science.

The MSK based vaccine is in a very sad state given Y-Mabs don’t own it and it is living in no-mans land now as far as I know so the trial can not be expanded. I also don’t think it is fair to lump DFMO and vaccine in the same bucket.

I find it frustrating we keep talking about more and more intensification of chemo and radiotherapy as the only next natural steps when Y-Mabs have hu3F8, MSK are already experimenting with bi-specific antibodies. St. Jude’s just released a paper with results regarding chemo-immunotherapy at induction.

Additionally in the age of genetics they need more trials around sequencing of tumor DNA at induction and treatment of tumors with a custom chemotherapy regime that we know the tumor is more likely sensitive to. Maybe a decrease in platinum based drugs (or prophylactic treatment) where appropriate to save some of our kids hearing.

Very frustrating.


Re MSKCC vaccine - YmAbs released a statement in back in May where they imply next phase of the trial will be a multicentre one as now they have capability for commercial production. Current Phase 2 is planned for completion in May 2020, so maybe after that? I’m hoping they will provide further update at the next ANR conference which is in May 2020 in fact. At any rate, MSKCC really did not wish to elaborate when I asked them, but they have conditionally accepted my son into the trial early next year so I’m assuming they will continue to develop the product…

And yes, “further intensification of treatment” sounds really terrible… if they continue down this path they will eventually cure the cancer, but destroy everything else.


Hi Jelena

Multicenter… as in the vaccine trial developed at MSK could possibly end up in European hospitals?

We start HU3f8 next week in Copenhagen, Denmark, so the vaccine would be much appreciated.

YmAbs has a Danish headquarter 15 minutes away from Copenhagen, so it would be a “no brainer”

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I hope so, we need more and better treatment options around the world…
Daniel, wishing you best of luck with your little one’s upcoming treatment, will keep my fingers and toes crossed for the best possible outcome!

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I have just emailed our two dr. asking about the vaccine.

They where attending the conference in France a cpl. a weeks ago and where talking to YmAbs and dr. Kushner about our case.

Thanks Jelena I hope we will get through this aswell.


Solving Kids Cancer UK released a statement on the above:


If the bivalent vaccine trial will be conducted in multiple centres accross the world, the current sites of Hu3F8 will definitely on top of the list.

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