Croatia..neuroblastoma


(Tomica Tomek) #1

Hello. My name is Tomislav from Croatia. My son Filip is diagnosed neuroblastoma 3 stage with n-myc amplification (more than 50 copies). We went thrue 6 cycles of chemotherapy.,surgery and autologous transpantation(BuMel). We are planing to have radiotherapy this month. What is our problem? In Croatia (we used NB 2004 protocol) patients with high risk neuroblastoma do not recive immunotherapy as frontline medicine for HR neuroblastoma. Can you help us? What is protocol in your country and does your child with HR neuroblastoma give immunoterpy? Thank you for information.


(Alexey) #2

Hi Tomislav,

A lot of European countries are participating in SIOPEN study and the immunotherapy step is part of this study.
This is a list of participated countries, but Croatia is not there…

http://www.siopen.org/about/member-countries-centres

I don’t know about the health system in your country, but may be your hospital can send you to one of European countries where this immunotherapy is available? For example, Germany is not part of SIOPEN, but I think they can do it.

Alexey


(Michele) #3

Hello Tomislav,
Yes, St. Louis Childrens Hospital does this treatment for hr neuroblastoma. We are in St. Louis, Missouri, USA
Michele Holmes


(Tomica Tomek) #4

Dear Michele

Can you help me with your hospital?

Maybe you know some doctor from that hospital for second opinion

Thank you in advance

BR

Tomislav

15.07.2016. u 23:51, Michele je napisao/la:


(Sam Saffron) #5

Tomislav,

These days both SIOPEN and COG, the two largest bodies in the western world treating NB always use ch 14:18 when treating high risk neuroblastoma (HRNB). There have been many studies that verified the impact of applying immunotherapy for HRNB. This is not disputed anywhere. Studies showed that applying immunotherapy raised survival by 10%, 50% of the tumors will respond to ch 14:18.

The US and COG usually use ch14.18/SP2/0 (aka. unituxin), SIOPEN use ch14:18 cho which is practically the same drug. There have been no human trials comparing the difference between ch14.18/sp2/0 and ch14.18 cho, there are unlikely to be any.

Unfortunately, unituxin is enormously expensive, a coarse of immunotherapy can cost upwards of 200K$ US if you pay out-of-pocket.

In SIOPEN we get the drug for free cause we are still participating in a study. Similarly, COG are running trials and also supply the drug.

Germany have been treating with ch 14:18 for over a decade now and have huge amounts of experience with it. Being in the EU it is likely you could simply move to Germany (it was suggested cause they are not yet a member of SIOPEN - but will be soon) and be treated in a hospital there. It is possible that you can transfer to the SIOPEN study (you would need to discuss that with your oncologist) if so you could move to a closer country to get treated.

Immunotherapy takes a long time, a full treatment will take approx 5 months including, at least, 5 weeks in hospital.


(Michele) #6

You want a Dr’s name? I can refer you to them with a phone number Also, my
grandsons Dr’s name was Dr. Shenoy, his fellow was Dr. Calhoun.

St. Louis Childrens Hospital main number is 314.454.6000

Michele

Tomislavcroatia Tomica Tomek
July 16

Dear Michele

Can you help me with your hospital?

Maybe you know some doctor from that hospital for second opinion

Thank you in advance

BR

Tomislav

15.07.2016. u 23:51, Michele je napisao/la:


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In Reply To
Michele
July 15
Hello Tomislav, Yes, St. Louis Childrens Hospital does this treatment for
hr neuroblastoma. We are in St. Louis, Missouri, USA Michele Holmes