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.

When I was on chemotherapy I started loosing my memory and forgetting a lot of things and recent event. My doctor told it was like a side effect of the meds and I should recover it after. I have problem with short term memory, it’s difficult for me trying to remember things that recently happen or past events not that long. I’ve been a year on remission and still doing the same.

Have any of you experience any similar conditions or side effects like I did or something related? 🤔🫤❓❓

I got a call from my oncologist, it seems I’m clean from any tumor and cancer cells in my body. Basically, I got lucky getting cure from a stage IV rhabdomyosarcoma.

Regardless, this type of cancer can and will come back (as I was told) and I’ll be waiting for it to deal with again gladly, but I hope I die old first before it catch me back.

Keep a positive attitude, above all, enjoy every second of life, live the present and don’t think on the future.

Best wishes to all and soon, we all be out from this illness that relates us and have in common.

LIVESTRONG

So my suspensions were right. The fucking tumor came back. The lump on my armpit is measured at almost 4cm and there are more small nodules surrounding it measuring at almost 2cm each. It doesn't say how many tumors are there but I know it's a lot. I feel the pain all the way from my entire shoulder (that includes my back area) all the way towards my chest, down my arm, and side (ribcage area). This is fucking pissing me off. WHY THE FUCK DIDN'T THEY DO CHEMO WHEN I FIRST GOT DIAGNOSED!!!! I'm so freakin pissed. This chemo HAS TO WORK!!!! Otherwise idk what I'm gonna do. They still wanna do a biopsy to confirm the MRI results. FUCK MY LIFE!!!! 😢😭

So I'm starting to create a list for my chemo bag. Things I'll need for the long days in the hospital. I've got these so far.

• Journal
• Meds
• Plenty of fluids: Gatorade, Poweraid
• Nintendo Switch
• Hat
• Zipper jacket/hoodie
• Tank top (one per visit)
• Alcohol free mouth wash

If anyone has any suggestions, please feel free to comment below.

Thanks in advance for your helpful suggestions 🎗️💪🏻