Burtomab ( 131i-8h9 ) treatment in Europe?


(Michiel Coene) #1

Hi everyone,

We are currently battling a refractory relapse with metastasis in the brain. I have read that there is a new drug called Burtomab, designed especially for this kind of situation. Sadly, it was created at Memorial Sloan Kettering, and our insurance nor the government will not cover treatment in the US.

I’ve seen that Y-mAbs ( licensed to create this drug ) has offices in Europe. Does anyone know if this treatment is offered somewhere in Europe? And if not, how I can go about funding this whole treatment?


(Sam Saffron) #2

I really do not know, I think it is only available at MSKCC, but I may be wrong.

There are quite a few ways you can cut down costs though, you could follow the MSKCC protocol up to the antibody part including stem cell collection at your local hospital.

Can you let us know what you find out when you contact Y-mAbs?


(Michiel Coene) #3

Apparently, they also used it at the University of Cologne. Prof. Dr. med. Frank Berthold was named in the press release. Maybe it can be given in Cologne too. I hope so. Cologne is just a one hour drive away.

See here:

https://www.ymabs.com/page/release/ymabs-announces-positive-topline-result-in-pivotal–study-of-burtomab-in-refractory-leptomeningeal–metastasis-from-neuroblastoma/


(Michiel Coene) #4

More news:

Ymabs responded to our oncologist and said trials for Burtomab are to be started in the US and the EU coming November. I have mailed them to ask at what specific sites in the EU they will be holding this trial. I will report back in this thread when I receive more information.

I don’t know if they’re going to respond to me, in which case I have to have my oncologist ask the questions again. They took four days to respond to my oncologist, so it might take a while before I can say anything.

The MSKCC has not yet responded to any mail my doctor has sent them.

To be continued…


(Michiel Coene) #5

I’ve just gotten word that Dr. Kramer will contact me next week.


(Mark Liu) #6

hi michiel. We’re now in the same situation. how about your child now? we just relapsed in CNS. now we’re in sant joan de deu of barcelona. Have you finished 8h9 therapy? in MSKCC or Koeln?


(Michiel Coene) #7

Hi Mark,

Unfortunately, our son did not survive. The cancer was too agressive to be cured. We’ve never made it to the Burtomab treatment, and the doctors told me he was too young to receive such treatment.


(Mark Liu) #8

so sorry to hear that…I wish everything goes well with you! How old was your boy then? my boy is 22 months old and just went through the surgery…and the doc says he needs surgery, chemo, radio, 8h9 and 3f8… five steps.


(Shao) #9

You may contact hospital sant Joan de Deu in Barcelona. I heard they can offer 8H9. Hope this msg can help