Experiences with Intermediate-Risk Embryonal RMS Treatment in Young Children
Experiences with Intermediate-Risk Embryonal RMS Treatment in Young Children
Our 4-year-old daughter was diagnosed about 6 weeks ago with Stage 3, intermediate-risk embryonal rhabdomyosarcoma after a large pelvic tumor (about 10–11 cm) was discovered in her pelvis. It was compressing both ureters and causing hydronephrosis, so she required bilateral nephrostomy tubes before starting treatment.
She's being treated at St. Jude on a protocol using VAC chemotherapy plus liposomal irinotecan.
Thankfully, the tumor has responded extremely well so far. It has shrunk dramatically, is now difficult to even feel, and her kidney drainage has improved enough that the plan is to internalize her nephrostomy tubes soon.
The hardest part has been the treatment side effects. After her first cycle of liposomal irinotecan, she developed severe delayed diarrhea that progressed to pancolitis, dehydration, and a hospitalization for IV fluids, antibiotics, and supportive care. It was a scary week, but she recovered well.
She has now completed her 7th treatment. Her appetite is returning, she's eating much better, and after fluids and good meals she's back up to 14.7 kg (32.4 lbs). She also has some vincristine-related nerve symptoms (facial/voice changes and decreased knee reflexes), which her team is monitoring closely.
Overall, we're incredibly thankful for how well the cancer has responded, but the side effects have been much tougher than we expected.
I'd love to hear from other parents whose children went through treatment for intermediate-risk embryonal rhabdomyosarcoma, especially if they received VAC with irinotecan. How did the rest of treatment go? Did the severe GI side effects recur? Did the vincristine neuropathy eventually improve?
Thank you in advance. Reading the experiences of others has been incredibly helpful for our family.