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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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
Hi, Aqil. Nice to hear you at Sant Joan de Deu too. My daughter is under 3rd cycle of immunotherapy.
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?
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.
Hi Aqil,
My daughter has not responded well to Induction Chemo so is considered refractory. Could you tell me how your son is responding to hu3f8? Does he have any bone lesions? My daughter has many bone lesions, and they are not responding at all to any chemotherapy. Her primary tumour is reducing slowly but no response from bones.
Please could you let me know your sons results. Many thanks.
Hi Kelly,
Please could you let me know if hu3f8 helped cleae all of your daughters bone lesions? We are facing the same issues with our daughters bone lesions. They are deemed refractory to chemo
Thanks.
Thankfully my son is responding, after 2 cycle he is in metabolical complete remission.
Currently he doing his 8th cycle of chemo-immuno(hu3f8).
You can send and email to sant joan deu hospital about your daughter’s latest condition, hopefully they can give you some recommendation.
I am informed by fellow parents from UK in Sant joan de deu, now they are doing ICE chemotherapy together with Hu3f8 for the first time for refractory and relapse case,
and I heard it worked really well for their relapsed daughter and now she is in remission.
If you need any help just let me know.
All the best wishes for your daughter :).
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Thank you so much for your response. I will contact Barcelona as that is great news that your son has responded so well!
Our UK hospital was given the license for hu3f8 for refractory in May, along with 3 other UK hospitals. but our consultant has told me they are not ready yet to start and no other UK hospital has any date confirmed to start either. This is why I am now seriously considering Barcelona as I do not want to sit and keep waiting for UK to be ready. This could take many more months.
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Hi Sumera. After 5 cycles of Hu3F8 She is CR now. You can contact SJD for detailed treatment schedule. Wish you daughter good luck.
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Hi Kelly. Thank you for your reply. I have submitted a request to be called on their website so hopefully will hear back soon. Do you have an email address of anyone specific I could contact at the hospital?
Thanks.
I will send u a message. 
Seems these are preliminary results for chemoimmunotherapy (Hu3F8): https://cmoffice.kenes.com/cmsearchableprogrammeV15/conferencemanager/programme/personid/anonymous/siop19/normal/b833d15f547f3cf698a5e922754684fa334885ed#!abstractdetails/0000496230
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Is anyone able to offer any advice. My brother is 22. He has had Neuroblastoma since he was 14. Theyve exhausted all the treatment available in the UK. He relapsed last year and he went on to have 1 cycle of anti gd2. He developed severe neurotoxicity and PRES syndrome and now has residual autonomic dysfunction and peripheral neuropathy.
We asked for a scan and result have said on MiBG he has progressive relapse. The doctors have said there is no more they can do, he is well in himself but despite reality I feel we havent exhausted all his options? Any advice please