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

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 Cancer Support Group.

@vivianfromaz

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.

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That sounds very similar to the location of my niece’s tumor. Did you have any surgery to remove the tumor? Can you share the types of chemo you’ve had and are getting now? I wish you the best!

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@edb1123

That sounds very similar to the location of my niece’s tumor. Did you have any surgery to remove the tumor? Can you share the types of chemo you’ve had and are getting now? I wish you the best!

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If your niece is at Mayo, she will be getting the very best possible care. Ewings typically affects teenagers and children way more often than old people like me. And mine was misdiagnosed in 2018 as a non-malignant mass. Initially I had surgery to remove a lump on my back and when it was determined to be sarcoma I went to my university sarcoma Center. A month later I had radical surgery to remove all remaining cells of the tumor. A month later I had flap reconstruction. I already had metastasis to my lungs so then I had 6 months of chemotherapy which reduced all the nodules. Over the next two years I had four different rounds of radiation at Mayo to zap tiny nodules that appeared individually over my lungs with very good results. Last September I needed chemo at mayo to address a few nodules in my lungs and beginning in March I have a third treatment plan with new chemo . They say every patient and every chemo is different. Has been true for me. If you want to talk more with me about specific things, feel free to text back. But the best thing to do is to write down all your questions and take them to Mayo every single time. They're very patient. They're very complete and treatment changes everyday. You and your niece re are in my prayers and good thoughts

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@edb1123

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?

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Sorry to hear about your niece. I had Ewing Sarcoma soft tissue tumor. I had 14 cycles of chemo and surgery. Cycles alternated between vincristine, cyclophosphamide, doxorubicin and ifosfomide & etoposide. It took almost a year to get through and hospitalizations for the chemo and sometimes in-between for low blood counts and transfusions. I am now approaching my 5 year mark for being free of cancer!! There is hope and Mayo is excellent!! I wish your niece all the best. She is lucky to have someone who cares so much in her corner. It's going to be a long road and she will need all the support from family and friends.

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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.

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@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

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@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

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@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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