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

Posted by kristennursepatient @kristennursepatient, Mar 18, 2019

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?

Interested in more discussions like this? Go to the Sarcoma Support Group.

lisajade4mayo | @lisajade4mayo | Dec 20, 2023

I’m a 7 year survivor of myxofibrosarcoma. I was treated at Stanford. Part of my life involves being an advocate for patients. This is a choice. I want to help others. I’m working with a friend who has metastatic Ewings. He was diagnosed in his late twenties in 2017. He now has nodules in his lungs and some mets to bones in two spots. He was not originally seen by a specialist. I have read his report and it looks like things may have been missed in the past. He is at Stanford now and had a CT last night and will have a PET on Thursday. He is on his third chemo (I did not have chemo and I don’t remember the name.). He has done two cycles and we will know if there is any improvement this week. What have others done for bone mets? I believe they are small. I I don’t understand why they are not treating those mets during chemo. Are there any clinical trials available? The subtypes are so different that I need to understand Ewings more. Many thanks.

REPLY
momof3russians | @momof3russians | Mar 18 5:01pm
In reply to @colleenyoung "@edb1123, sorry to hear about your niece. I moved your message to this existing discussion called:..." + (show)
@colleenyoung

@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?

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My sister was diagnosed with Ewing Sarcoma and she is 66. She just had her first chemo treatment. She has been told they probably will lose her lower leg. Does anyone have success stories on adults with this CRAP!! Thank you

REPLY
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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 23 5:29pm
In reply to @momof3russians "My sister was diagnosed with Ewing Sarcoma and she is 66. She just had her first..." + (show)
@momof3russians

My sister was diagnosed with Ewing Sarcoma and she is 66. She just had her first chemo treatment. She has been told they probably will lose her lower leg. Does anyone have success stories on adults with this CRAP!! Thank you

Jump to this post

@momof3russians, this must be so hard for your sister to lose her lower limb. I'm tagging @kristennursepatient and @vivianfromaz, as they too were diagnosed with Ewing's sarcoma as adults.

How is your sister doing on chemo?

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