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 group.

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.

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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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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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@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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@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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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!

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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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@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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