We received some bad news

(Michiel Coene) #1

We had some bad news yesterday. Our little boy will not survive because his cancer is refractory. The only options we have are hospice care or join the Beacon trial that will be started next week in our hospital.


(Nick) #2

Hi there. Which hospital are you at? And when you say refractory do you mean there was insufficient response to induction therapy? What is your son’s diagnosis in terms of tumour biology, MYCN +/- etc.?


(Michiel Coene) #3

We are in ath the Ghent University Hospital at the moment. There was a good response at first, but, after the tumour resection all the metastasis in his bones began to grow, his bone marrow was invaded and he developed brain mets too… Since then we had additional TVD, MTX and ICE. Non of those were successful, leading the doctors to believe the tumour is resistent to all chemo they throw at it. The disease is progressing.

The BEACON trial that will start next week will be Bevacizumab, Irinotecan and/or Temozolomide. The doctors do not expect this will cure him, but it will stretch out the remaining time we have.

Tumour biology did not reveal any abnormalities. No MYCN, nothing really. The doctors are quite stumped by this one.

Just out of interest, beside MYCN, what can they test for?


(Sam Saffron) #4

Hi Michiel,

So sorry to hear the news, I wish you get some better news when you start the SIOPEN BEACON trial. I am so sorry for you and your family

The most common test would be for ALK cause they now have Lorlatinib which showed a lot of promise in pre-clinical work. They have had Crizotinib for quite a few years which has had mixed results.

Some other tests may be for ATRX, which is a marker for a very aggressive form of NB. But in general what hospitals like MSKCC and Chop (in the USA) do is have large panel of hundreds of genes they test for just in case there is a drug.

Additionally perhaps gather some data and contact a few hospitals in the US for advice like Chop, MSKCC, St. Judes, SCH.

Stay strong