Ewing's Sarcoma: Where are you in your journey?

I’m Sarah, daughter is Maddie is 15 and she was diagnosed with Ewing Sarcoma in December 2018. We are currently going through intense chemotherapy every 2-3 weeks. In the next week or so she will start 6 weeks of radiation on her right shoulder, where the biggest tumor is. She’s currently not attending school. Days in between chemo are mostly filled with blood transfusions, platlet transfusions, fevers, neutropenia, but she does manage to usually have a few good days where she is feeling well and can be as normal of a teenager as possible. We anticipate her treatment to last into late summer/early fall.

I love the name: @madstrong!! I can't imagine it being my child, it was rough on me as an adult. I will keep you and your daughter in my prayers. One day at a time, one treatment at a time. Make a list of the things she wants to do when she gets through treatments. Those types of things were huge for me while i was going through rough times.

@madstrong you can PM me any time- just to vent, for advice, or whatever. I'll try to respond within a day or two. You or your daughter.

Hi @madstrong and @kristennursepatient, I wanted to check in to see how you are doing. Sarah, I'm sure you have your hands full. How is radiation going for your daughter? How are you?

Thanks @colleenyoung ! I've been doing ok. I'm back to work full time, but need to be better about my exercises to restrengthen. No evidence of disease on last scans, so planning for the future!

Hi @madstrong can you please provide an update on your situation? How is your daughters health? How have the treatments been working? A family member of mine (16 years old) has been diagnosed with Ewing Sarcoma, with the tumor growth occurring on her fibula.

Has anyone had or known someone with Ewing Sarcoma? My niece has it and is about to start treatment. She is 27 which is older than most people who usually get this. Can anyone share their experiences and treatments they were given?

@edb1123, sorry to hear about your niece. I moved your message to this existing discussion called:
– Ewing's Sarcoma: Where are you in your journey? https://connect.mayoclinic.org/discussion/ewings-sarcoma-1/

I did this so you can connect with other members with experience with Ewing's sarcoma like @mgashaj @kristennursepatient @madstrong @suzanneb @erikahamilton and @erasahai.

If you niece is interested in connecting with other young adults with cancer, she can join the discussion forum here on Connect and also the monthly Zoom support group:
– Adolescent & Young Adult (AYA) Cancer group https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/
– YA, Me Too: Young Adult Cancer Support Group Meeting https://connect.mayoclinic.org/event/ya-me-too-young-adult-support-group-meeting-113/

What treatment will your niece be starting? How is she doing with all this?

Thanks, Colleen! She is supposed to start chemo this week but she doesn’t want to share anything at this time. I am trying to learn more about this disease. If anyone is willing to share their experience, I would appreciate it!

I'm sorry to hear about your neice. I was diagnosed with soft tissue sarcoma most like Ewings in 2018 when I was 65 years old. Originally I had a tumor on my back near the shoulder blade. I've been in active treatment since with metastasis to my lungs. Chemo and Radiation over the last 4 years, currently back in a new chemo treatment plan.