hu3F8 available in Hospital Sant Joan Déu in Spain (and other hospitals)

(Mark Shirran) #6

Thanks Nasos

The only data I’ve seen for the vaccine is from the following 2 sources:

  1. The 2014 article published by the MSK group: http://clincancerres.aacrjournals.org/content/20/5/1375.long
    and
  2. Presentations by Brian Kushner and Shakeel Modak at various patient/parent nb conferences.

I did push Brian Kushner for more information but unsurprisingly he wasn’t very forthcoming!

I think the bottom line is no one really knows if it makes a difference and if so, how much of a difference. There are so many other variables at play in the small number of patients that we are talking about, so you have to be very careful how this limited data is interpreted.

For me, the vaccine:

  1. makes sense biologically
  2. seems to have limited significant side effects
  3. the very limited data presented at conferences suggests there might be an improvement in survival (in patients who have previously relapsed) - but as I say there are so many confounding factors and the trials so far haven’t been set up to answer this question - the only published data I’m aware of is linked above and was a phase 1 trial that primarily investigated the maximum tolerated dose
  4. and is something we could personally afford (after a lot of fundraising!)
    … so for us it made sense to give it a shot!

Sorry I can’t be of more help!

Mark

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(Nasos Mwraitis) #7

Thanks for the response Mark. Of course for a relapse case seems logic to follow the vaccine. As fas as i know in memorial they started doing it also in all first remission patients . that is to be honest the thing that keeps going into my mind. If its a logic step to put a child in remission in this therapy.

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(Mark Shirran) #8

Yes Nasos, they have definitely started giving the vaccine to children in first remission at MSK as we are one of them!

All the best, Mark

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(Nasos Mwraitis) #9

Wish you all the best

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(Sam Saffron) #10

Looks like hu3F8 is going to be far more widely available in a trial very soon:

Locations in California, Florida, Indiana, New York, Ohio, Texas, Denmark, Spain and UK

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Top US NB treatment facilities/protocols
(Donna Ludwinski) #11

Yes Sam – the goal is EMA and FDA approval. Trial should be open next month! I had the great pleasure of finally meeting Dr Mora from Barcelona (after years of email) at the AACR pediatric meeting in Dec – he is fantastic! Someone should make a movie out of this whole story some day. :smiley:

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(James) #12

oh wow! you’re such a lucky woman Donna! I mean, for meeting Dr. Mora. would really appreciate some more details about that meeting!

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(Donna Ludwinski) #13

Trial is now open in Barcelona. For now, unlikely to open in UK at Harley Street.

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(Mark Liu) #14

great to hear. do they take patient in first remmsion? i see the trial is for relapse or refractory

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(Donna Ludwinski) #15

The trial is open for relapse/refractory (bone and or marrow) but no trial for 1st remission. Best thing is to contact Dr Mora about 1st remission (frontline).

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(Shao) #16

Yes. Hospital sant Joan de deu accept international NB patient for Hu3F8. But you should check with them your eligibility before coming

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(jindrich daniel) #17

dear donna, I wonder if you could give me some info about your visit in barcelona.
have your child been already treated there?
thank you
jindrich

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(Donna Ludwinski) #18

Hi Jindrich,

I met Dr Mora at a pediatric oncology meeting in the US last Dec, and haven’t been to Barcelona. I can put you in touch with families who have been there if you would like. What is the status of your child?

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(jindrich daniel) #19

hi donna
thanks for your answer.
our little finished induction therapy incl. TVD and the coming wednesday she’ll have surgery, HDT is planned for early november.
would be great if you could connect me.
br jindrich

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(jindrich daniel) #20

hi donna,
I hope you are fine, can you get back to me please.
we are back from HDT now and we would like to contact parents who went to spain.
thank you
jindrich

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(Aqil Bahasuan) #21

Currently my son is treated at Hospital Sant Joan de Deu, on a refractory neuroblastoma case, he is getting 2 cycle chemo-immunotherapy trials.

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(Donna Ludwinski) #22

Dear jindrich – I am so sorry I missed this message! I hope tings are well. Please feel free to email me at donna@solvingkidscancer.org – I am happy to help in anyway I can

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(Kelly) #23

Hi, Aqil. Nice to hear you at Sant Joan de Deu too. My daughter is under 3rd cycle of immunotherapy.

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(Aqil Bahasuan) #24

Oo, hi, I guess your daughter already in complete remission, all the best wishes for her :), so how many cycles of immunotheraphy planned for her?

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(Kelly) #26

Her bone was not cleaned yet. The standard immunotherapy is 5 cycles but many kids undertook 7 cycles. Wish you and your family good luck.

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