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Diagnosed with sarcoma? Let's share

Sarcoma | Last Active: 3 days ago | Replies (853)

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@amydunn

Update stage 4
Roswell has been seeing an orthopedic doctor regarding a mass that showed up on her hand after a hand injury last may (She saw a dr. Right after the hand injury to make sure nothing was broken). We went for an MRI two weeks ago, and we were referred to a specialist at LEVINE CANCER INSTITUTE (Rare and complex). The doctor from LCI scheduled us for an ultrasound thinking it was vascular related.
Fast forward to Friday she was having extreme right knee pain with a fever. Saturday morning she still had extreme knee pain and wouldn't walk. I took her to LCH ED to get her evaluated. Her calcium level was extremelv elevated so she was admitted for fluids and Lasix. Since being here she is now on fluids, Lasix, calcitonin, potassium, magnesium and pain medicine.
She got an MRI of her pelvis and lower extremities, along with the biopsy of her hand. Mid scan the radiologist called her doctor to notify him of abnormal bone marrow pattern in all the scans.
Today we got the results and Roswell has
Rhabdomyosarcoma. She will need to have an echo, MRI of her chest, bone marrow biopsy/ aspiration, PET scan and a port put in, all which will happen sometime in the next couple days. All of these procedures are going to help them stage her cancer and find the best regimen of chemotherapy.
Our whole world has been turned upside down.

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Replies to "Update stage 4 Roswell has been seeing an orthopedic doctor regarding a mass that showed up..."

Try and stay strong, I know how you feel as my Dad went from having just a benign small skin tag taken off his back in dermatology to having multiple sarcomas in both lungs - there are some good treatments out there though. I just try to stay positive (as hard as it is), sarcomas are so rare that everyone is so different and what may not work for someone may work for others - mind over matter is a big thing too - good luck with everything. Dad started Trabectadin chemo last week, it’s low toxicity and touch wood has had only slight nausea which has been controlled with anti sickness tablets. This seems a long term option if it manages to stabilise/shrink the lung sarcomas, fingers crossed. Let us know how you get on xx