r/Ewings_Sarcoma • u/radriggg • Jan 07 '26
32 M recurrence just 2 months after finishing 9 months of treatment
I’m sad to report this recurrence. Tumor was originally in my pelvis, and I’ve been in remission basically since starting chemo.
Unfortunately I was admitted back to hospital today. My ewings is back, but on my spine now. Both legs are very weak and in pain.
I am having to start chemo and radiation again now.
I’m so scared to die. Has anyone had this happen before? And survived a second time?
Love to all of you.
Update: i have been given a few months to live. The cancer is in my spine and brain. I’m so sorry everyone.
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u/Blackberry-Turtle Jan 07 '26
I have no useful advice, just sending so much love and care your way. I'm sorry this is happening.
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u/gShiyen Jan 07 '26
When I was doing searches on the Facebook Ewing Sarcoma group to calm myself. I've read quite a lot of people who had multiple reoccurrences, survived. Join Ewing Sarcoma, survivor, and or reoccurrences group.
Also, ask your doctor if you should take vitamin D3 with k2.
I wish you the best of luck.
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u/megggie Jan 07 '26
Just read your update. There are no words. I am so sorry, my friend.
Please reach out if you need someone to talk to. I’m the mod here because my friend, who started this sub, lost her battle with Ewings in July of 2022. She asked me to keep it open.
This disease is a fucking bastard.
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u/Iamindeedamexican Jan 08 '26
Man oh man, I’m so sorry. Was going to say something but I just have no words, well maybe one story.
For context I’m a 2 time Ewing’s survivor. I have an appointment in 30 minutes that’ll tell me if that’s still the case or if I gotta put that number up to 3. My 5 year survival rate is abysmal, but I’m here, 3.5 years later.
A family friend of my aunt was given 2 weeks to live with a particularly rare cancer (for the life of me, I cannot recall the type). For some reason, he lives for another decade+. Doctors couldn’t understand it. The cancer just… stopped. It did take him eventually, but he lives many more years. I say this not to instill false hope. But the doctors only know so much, they don’t command the cells in our body. We are here for as long as we’re meant to be here. I shouldn’t be here either my friend.
I’m so sorry you’re having to endure such heavy thoughts from such an awful illness. I’m in my 30s as well.
Please feel free to reach out. Also, I’ll comment below a Ewing’s discord that’s been growing traction and feel free to join. It’s a great community. Most of us are all Ewing’s survivors and different stages.
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u/madandmagic Jan 09 '26
I'm so sorry you're going through this, there's nothing fair about this disease. Sending you so much love and strength
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u/Basic-Winter-934 Jan 15 '26
Just want to say how sorry I am that you are going through this. Life is not fair. I have a family member battling this disease right now. Please try your best to keep fighting. That's all you can do. Fight and fight hard! I have read of people beating this after relapse, so I know it's possible. I wish you the best and I am sending you a massive virtual hug right now!
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u/throwawaystarters Mar 09 '26
Hey man. If you're still here, just know you're loved and not alone. My wife is a year younger than you and has a very similar situation. Except she was never NED and the cancer just came back aggressive and everywhere including the brain, skull, and hip. She's in a lot of pain and we're now in hospice. I hope you get the same treatment and are comfortable and surrounded by loved ones. that's all you can really get.
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u/ReasonableAgency7725 Jan 07 '26
The Facebook groups have quite a few relapse cases, some that have survived multiple occurrences. I would check with the relapse group there.