Ewing's Sarcoma

Ewing's and Ewing's-like Sarcoma patients discussion, restart with where you are with your diagnosis/treatment/recovery.

I'll start. I'm Kristen, diagnosed with Ewing's sarcoma in November of 2017. Finished my last chemo October of 2018 and currently back to work full time. Scans have been clean since March 2018, now just monitoring every 4 months. My hair is coming back nicely and my strength and stamina grow stronger daily.

@suzanneb @zaruhi @cali2007 and @erikahamilton Care to share, question or comment?

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.

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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.

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@madstrong

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.

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@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.

Liked by madstrong

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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?

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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!

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@madstrong

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.

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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.

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