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My battle through Ewing Sarcoma

XGreenLntrnX
Posts: 1
Joined: May 2010

I'm new to the Cancer Survivor board and am a Ewing Sarcoma Fighter/Survivor. I have one month of chemo therapy to go and am hoping to dive into making a short film about my journey. I have recently started a blog and also have begun mentoring some of the newer Sarcoma peers I have met through my hospital and through chemo. I was hoping I can get on here and you guys would show your support for my blog and my short film. If anyone has any questions for me about cancer, ewings sarcoma, what I've dealt with so far or my short film feel free to ask me. I look forward to meeting anyone and everyone. And I wish you all the very best through the troubling times that may lie ahead.

Anthony

http://teejayryan.wordpress.com/
http://www.indiegogo.com/Beat-That
http://www.facebook.com/ABruno.TJRyan

Wendy King
Posts: 1
Joined: Jun 2010

Hi, Anthony...

I just signed up and found your post. I am four months out from my last treatment. I walked out of U.W. hospital January 17th. Just did a three month check and I am all clear.

I found my lump last March and by May 6th I had a biopsy done. Started chemo about one year ago. Hell year. BUT, all is good. How are you doing??

daffodil74
Posts: 1
Joined: Jul 2010

I am a 19 year Ewing Sarcoma survivor. I found out I had cancer when I was 16 and was sent to St. Jude immediately for surgery and treatment. That's when they confirmed it was Ewings. I have not had any recurrences since then. Best wishes through the rest of your treatment.

rose_hadds's picture
rose_hadds
Posts: 34
Joined: Jul 2010

I am 2 mth post treatment for ewings. i am rare as i am 45. Mine was in my base skull soft tissue with mets to my lung. I had 4 rounds of chemo a lobe removed from my lung and 35 rad treatments to my head. My prognosis is actually good. Still scared but stll here. My first follow up scans aare in Aug. so I am a little nervous. Most Ewings are young so my age is a factor. I live each day and try to be positive. Good luck in your journey.

love2hearts
Posts: 5
Joined: Aug 2010

I have just been diagnosed with Ewings in my heel bone. They have me on crutches and I have been told I will be on crutches for months and will probably have to have my foot amputated. I am 55 so I guess that makes me rare also. I went in for a sore ankle and was not prepared for the results. I have a CT scan of my chest next week and my first appointment with the oncologist. I am scared and have no idea what to expect. I have no idea what my prognosis will be but I am praying it will be good. I just took an early retirement package so I could spend extra time with my 82 year old mother and travel with my husband. This has been such a shock. Any advice would be so appreciated. I am so glad my daughter found this site for support. I am trying to be positive.
Thank you and God bless.

isleoferin
Posts: 1
Joined: Jan 2011

My father has just been diagnosed with a soft tissue ewing's sarcoma in his thigh. He had the tumor removed already prior to the doctors' diagnosing it as a Ewings. He is a 71 year old irishman in relatively good health. He has met the oncologists who are providing information regarding chemo or radiation. There is so little information regarding these treatments in older adults. Would the side effects of the treatments be worse than going without. From your experience, would you proceed with treatment at 71. He was in pain before the surgery because the tumor was sitting on his sciatic nerve but since then (the surgery was on 12/23/10), he is moving freely with no meds/crutches/limp. He says he feels better than he has in a long time. His CT scan shows no cancer anywhere else.

We are not sure what the right path is...any thoughts from personal experience is greatly appreciated!

Thank you and I hope the angels are watching over you!

3TimeChamp's picture
3TimeChamp
Posts: 4
Joined: Aug 2010

I'm a 21 year old who has beaten the disease 3 times. I was first diagnosed when I was fourteen, relasped when I was fifteen, and relasped again when I was 20. After the many, many rounds of chemo, 14 weeks of radiation (6 weeks the first two times and just recently 2 more weeks), a bone marrow transplant, and a lot of surgeries (two most recent ones were the lung surgery in April and the ablation in June), I'm finally happy to announce I'm in remission and looking forward to June 26, 2015 when I can donate blood.

Best of luck on the film!!! If there's anything I can do let me know and I'll gladly help as much as I can.

nikki1988
Posts: 6
Joined: Aug 2010

My name is Nikki Im 21 and just found out I haveewing sarcoma. I had my whole right kidney exstacted and am await my chemo. I also just found out today its spead through out my body in my lungs back shoulders ect.. I would like as much support and info I can get to make my battle less stress full and give me good ppl to talk 2! I am very postive about this fight I have a 3yr old little girl what more the reason to beat this ! she is my everything and thre is nothing i wouldnt do for her and my self!

Thanks so much Godbless u and your family
nicole

rahima
Posts: 1
Joined: Feb 2011

my son of age 22 came across ewing sarcoma in kidney worried upset

vanessarodgers
Posts: 1
Joined: Nov 2012

My son, 14, was also diagnosed with renal ewings sarcoma. we are currently at md anderson in houston tx.

sven21
Posts: 1
Joined: Apr 2011

Hey Nikki,

I'm Sven, 27 years old and I already faught Ewing 2 times. The first time I had a tumor in my pelvis, (the left Illeum wing). I thaught i had beaten my tumor, but four years later they found 3 little tumors in my left lung, i faught again against this monster an i won again, i"m now 3,5 years without tumors, let's hope that it stays that way.

I wish you all the best and lots of strenght

maoberst's picture
maoberst
Posts: 11
Joined: Oct 2012

Hi Sven,

 

What treatment did you have to get rid of the tumors in your lungs?  In case we are faced with that dilemma, I want to be prepared to understand survivor stories!

 

Thanks, Melissa

Sonny1221
Posts: 5
Joined: Jan 2013

Did anyone's Ewing sarcoma ever recur or came back within 5 weeks and three days of last chemo treatment?

maoberst's picture
maoberst
Posts: 11
Joined: Oct 2012

Do you suspect you recurred?  Yes, I have heard of a recurrence that comes back quickly.  Where was your Ewing's located?

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