TVD After rapid COGEC

Hello every one,

First of all, please forgive my hesitant english (south of France ). My son (4y old) has been diagnosed with a 4 stage abdominal neuroblastoma in february 2019, with skeletal and Bone marrow involvment with a siopen MIBG score of 29. He underwent the 8 cycles of rapid Cogec but this have not cleared it all with myelogram still invaded (Biopsy was negative) and the siopen MIBG score is now of 6. The abdominal tumor decreased in volume. So now we are waiting for the cycles of TVD (still not enough platlets and neutros). my question is for Those who have experienced that protocol After rapid Cogec : what delai After the induction therapy it took to start it (for us it s been almost a mounth After last cycle)? And did it help achieving a response to go to surgery ? What was the siopen score prior to TVD ? Is it related to the chances of success ?

Thanks a lot for your answers and feel free to share with us your experiences with that stage…

This is so tough, I am so sorry you are going through this.

One thing to keep in mind is that in general surgery is a very risky procedure so the surgeons tend prefer to shrink the tumour as much as possible prior to operating. Especially complex wrapped around masses. The surgery is very complex cause with cancers it is not a simple thing of removing a mass, the mass invades surrounding tissues. In our case it was an extremely long surgery and multiple days in ICU to remove the mass.

It is very tempting worry about odds early on when being treated. Instead I recommend, if your case is complex, to try to reach to some leading hospitals in your area to see if they recommend anything else. should be fairly close and has access to some immunotherapy drugs that you can not get yet in France which may impact treatment decisions. Maybe institut curie?

My son went through Rapid COJEC followed by two cycles of TVD. It must have been also about a month between them, I can’t remember the exact dates. My son had large masses on both of his adrenal glands, so the plan was to shrink them as much as possible before surgery, so that at least one adrenal gland can be preserved. It worked out, only one adrenal gland had to be removed (together with the tumor), and on the other side there is still a calcified rest, which is stable since then (shrunken from a 4x8cm mass to under 1cm).
MIBG was already negative after Rapid COJEC, the masses were almost halved and TVD made them even smaller.
We finished high risk treatment over two years ago and everything is still fine.
Hope that helps a bit.
Best wishes,

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