2de relapse..we need your advise

(Yasin) #1

After first relapse my son did Siopen N5 N6 chemotherapy combination in Holland almost 9 cycles.
He was almost clean, than we get over Ch1418/Cho in Germany Greifswald for 5 cycles.

Everything was going good, the doctors says the small spot is respons to Antibody.
And they told us come over 3 weeks back for the scans.

After 3 weeks with scans the discover 3 new spots and bone marrow my son relapsed for 2 time.

Who can tell us what we can do in this situation???

(Sam Saffron) #2

So sorry to hear this.

I am afraid nobody really exactly what to do but I think there are a few things you can try.

Perhaps contact some hospitals like Memorial Sloan, Sant Joan Déu in Spain which have access to a different antibody. Memorial Sloan have some other cutting edge treatments coming available just now like a bi-sepcific antibody.

Perhaps contact some other hospitals like Chop, St. Judes for advice.

Consider if MIBG treatment makes sense with your Oncologist,

Consider genetic testing to see if there are any targeted treatments does your son have the ALK gene?

(Yasin) #3

Dear Sam,

My son is Alk overexpersion.

And we use Crizotinib.

What can you recommend us.

Thank you so much.


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(Sam Saffron) #4

Oh definitely recommend you contact Solving Kids Cancer

The trial runs in the UK as well, so it may be more feasible to you.

Note, this is a phase 1 trial. Often oncologists get very upset when people say “promising results” for phase 1 where you are just trying to figure out how much of the drug you can give. That in the lab Lorlatinib has worked much better than Crizotinib.