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

@colleenyoung - she has begun her Chemo, shes on nearly a dozen different drugs. Shes at CS Motts Hospital in Ann Arbor, MI. Shes got a strong demeanor about the whole ordeal, she'll pull through I'm sure, i'm just worried about the effects of the treatment. The doctors have told her that her taste buds will change, but that she just needs to eat.

@mgashaj, here are a few tips that I have learned from other patients on chemo regarding taste changes. They may be worth sharing with your cousin to see if any are helpful for her:

- Use wooden or plastic utensils.
Sometimes when food has a metallic taste, regular cutlery can make it worse. You can find wooden cutlery in eco stores. I found them cheaper in kitchenware stores in the Chinatown where I live.

- Save your favorite meals and foods for after chemo
Some people find that their favorite food don't taste the same while on chemo and the chemo version ruins their favorite foods for later.

- Eat small amounts when you don't feel like eating

Here are more tips: https://www.rogelcancercenter.org/support/symptoms-and-side-effects/cancer-nutrition-services/managing-eating-problems/taste

How long will she be on chemo?

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?

@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?

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!

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.

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!

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

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.

Wonderful news!