Ewing Sarcoma in fibula of 16yo girl

Posted by mgashaj @mgashaj, Tue, Oct 15 12:47pm

Can someone please offer some advice to my cousin. She is 16, and has been diagnosed with Ewing’s sarcoma, originating in the fibula. She begins chemo today. I would really appreciate hearing some input from someone who has been in this position.

@mgashaj, I can imagine that you are anxious for your cousin. I'm bringing @madstrong and @kristennursepatient into this discussion so they can share first hand experiences with you.

How did chemo go today for your cousin? Do you know what type of chemo drugs she is getting?

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I actually already messaged @madstrong, I’m hoping to get a response as I can see she’s been in a very similar situation.

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Hello. I'm sorry that your cousin has to go through this. She's young and strong, she can beat this thing! Chemo was draining from the moment in ran in my veins. Extra rest, hard candies to suck on for the iphosphomide/etopiside, Lots of visitors-even when she says she's fine, a hobby that doesn't take much energy for the low days, I'm happy to answer any questions you may have. Stock up on hats and or scarves- fun ones.

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@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.

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@mgashaj

@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.

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@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?

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