HOW CAN THE UK BE SO INHUMAN - PLEASE RESPOND!!
 

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04-23-09 11:52 AM
karine
HOW CAN THE UK BE SO INHUMAN - PLEASE RESPOND!!
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I can't believe it and I can't accept it.  My daughter has stage iv neuroblastoma, like everyone on here, she is my world.  She is only 17 months.  I have just been updated on the wonderful findings of the ANBL0032 trial to be only told that my daugther, who is on the european protocol will only receive the CH14.18 immunotherapy alone ccompanied with Accutane with no GMCSF or IL2? Is there any point in her having it now? It might not be effective. Why does everything take so long.  They think its going to take at least 1 year before they have the GMCSF and IL2.  I have heard in America everyone now who is elgible will receive the same as on the ANBL0032 trial and it is closed to foreign people and only given to american citizens. My daughter, Sophie,is only on her day 60 of induction chemotherapy and by the time they do receive the GMCSF it will be too late for my her.  I asked my oncologist if there is anywhere in the world we could get her this privately and was told NO! Does anyone have any advice for me.  I feel that I want to try my very best for my Sophie and give her the best chance she has of surviving this.  It is my duty! Many thanks in anticipation. X 

04-29-09 04:32 AM
Tim Francis
Re: HOW CAN THE UK BE SO INHUMAN - PLEASE RESPOND!!
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Karine,

 

I was so sorry to read about your daughter.

My grandson is in exactly the same position and we were told that the drug will not be available intil next year

I dont think we will even get Ch 14-18

We are dredging through the whole of Europe to try to find something- if we get anywhere I will let you know and meanwhile if you come up with anything

think of us.

04-29-09 11:56 AM
Jennifer Click
Re: HOW CAN THE UK BE SO INHUMAN - PLEASE RESPOND!!
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Your daughter would likely be eligible for 3F8 antibodies with GMCSF at Sloan-Kettering in New York City.  3F8 is an anti-GD2 antibody similar to ch14.18. Sloan has been using 3F8 with its NB patients for 20 years.

There are visa requirements and financial issues to work out when coming to the US for treatment, but if you want antibody treatment, it is worth investigating.  There's a lot of information on 3F8 on the Sloan website: http://www.mskcc.org/mskcc/html/3215.cfm.

 Hope this helps!

Jen Click, Carolyn's mom -- dx 1/03, NED 7/03 treated on N8 at MSK