Please, looking for input before meeting with our doctors.
Has anyone experienced that high risk NB has spread to the lungs in connection with relapse? And be kind, don’t give us the most unfortunate stories, we can’t handle it right now.
Where in the lungs? How many spots? How big?
Which treatment was subsequently used? How was the quality of life for the child during treatment?
Has anyone at all experienced that NB spread to the lungs (not by initial diagnosis, but through relapse) has disappeared?
Background: When almost 4 years old (July 2018) our daughter was diagnosed with NB stage 4. Solid tumor in right adrenal gland,
MYCN not amplified.
-COJEC chemotherapy according to the SIOPEN HR-NBL1 protocol.
-Surgery removed tumor in December 2018.
-Peripheral stem cell harvest, high-dose chemotherapy (busulfan-melphalan) and autologous SCT.
-Irradiation of primary tumor bed (protons at MD Anderson, Houston, Texas) in May/June 2019.
-Maintenance with alternating isotretinoin and anti-GD2 (Dinutuximab).
-Relapse in October 2019 two months before the end of isotretinoin/anti-GD2: 4 small spots (both upper arms, femur and back of her head) + 0-5 % in the bone marrow.
-BEACON: Temosolomid & Topotecan. Status quo.
-hu3F8 naxitamab and GM-CSF. After 4 courses several spots (up to 8 mm) in the lungs July 2020. We are now waiting for clarification on whether it is cancer or not.
She is strong and happy and has been so throughout most of the treatments.