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

Sarcoma | Last Active: Mar 23 5:29pm | Replies (22)

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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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Replies to "That sounds very similar to the location of my niece’s tumor. Did you have any surgery..."

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