Ewing's Sarcoma

shawnmcc said:

I had ewings sarcoma. The
I had ewings sarcoma. The only problem is I was with my girl friends house when I went into a coma. I was sent to a cancer hospital she was there trying to get a hold of my family. When the impossible happens and I was taken by air by mistake to a bunch of random hospitals. Then I ran away from the children’s hospital when I was 19 mistaken for a really tall 9 year old LOL. Now I have no proof of this happening. Even though I was in a coma for 9 months or more. Some strange old guy was in my place at home to. I went to a bone doctor again locally for several lumps that have been growing and I saw a old picture with the old dude on it LOL. Not sure why he was there. I know I complained about the pain before the coma maybe that’s why. So no proof my family wont believe me even if I told them. Plus a potentially problematic chemo port that is still there.

But I still can tell you about my treatment. From what I can remember. Well the chemo port for the last 10 years hasn’t really bothered me. But I am still waiting to see what will happen with that. I know at times under the chemo it felt like I was light headed and kind of sick to my stomach at the same time I wanted to just run away and stop the treatment. Its not easy to finish the treatment with out some one helping and encouraging the person to finish treatment. I had no family and I wish I had it would have helped me continue being treated for the cancer and be done with it now. But now I have to face it once more and have to convince the doctors to do something about it which is much more difficult to do then you would think even with insurance.

My younger brother has ewings.
Hi, I'm kinda new to all this but found some really inspiring stories on here about ES. My family have had a bit of a tough time of late. My mom was diagnosed with breast cancer last march 2011 who went through surgury chemo and radiation. Just before her radiation was due to be finished my younger brother (then 17) was diagnosed with ES in nov 2011. All from just a Pain in his leg. So far his had a femar and knee replacement as the Tumor was 10cm, 15 rounds of chemo with only two left to do. He will then face in a surgury on his shoulder as he has another Tumor there aswell. We don't really know what we're facing into really!! Will there be radiation or more chemo? Doctors are being quite tight lipped about that. He's getting on as we'll as could be expected nearly a full year into treatment. He's up walking on a cane right now but the chemo is getting tougher and tougher each time as his body is really run down. He missed his final year in school so there's been a lot of anger understandibly. Hes relaly stuggling with accepting his leg the way it is now. I just want to be here for him as much as possible and help him through the next few months. Any tips or tricks would be really great! Thanks S

eeyoredagaboo said:

Hello paj,
My name is Dorothy and I am a Ewings survivor of 23 years now. I was diagnosed right after my 20th birthday. It was in my left femur bone and my tumor was 6 inches long. It didn't spread anywhere though. The doc gave me a 30% chance to survivor and if I did I wouldn't still have my leg. My leg and I are both turning 43 in July!! I have a ton of health problems with the newest one being CHF but I am doing just fine inspite of all the medical problems. I had 21/2 years of chemo and six weeks of radiation. The radiation left my left badly damage but I get around. Please feel free to email me anytime. I just found this website. My address is madorrieeeyore@yahoo.com. I'll be praying for you and your son.

Ewings Survivor 26 years

Hello, My name is Diana I was reading your inspirational story. I am now 42 years old and overall healthy. Had a EWINGS sarcoma

diagnosed at the age of 15 in my lower spine. I had massive doses of chemo, two surgeries and radiation. I always had a limp in my left foot/leg, was

overall healthy after I survived it, but all of

a sudden the past 4 years my limp has become much worse. Neurologists say this is due to the radiation's long term side effects.

I never imagined that it would put me from working in a busy hospital to disability at this point. But I am HAPPY I am still alive after such an ordeal

soo long ago. I wish you the best.

mummymary said:

Ewing Sarcoma
Hi , my young daughter Sophie has just been diagnosed with Ewing Sarcoma 4 weeks ago and has 2 bouts of chemo. She is 19 yrs, very fit and the tumour is in her left scapula but spread to spine,pelvis and skull. Having said that my daughter is doing very well and will survive this awful disease. I would like to know your history and how long ago this happened and what treatment you had? I live in N.Ireland and any help would be appreciated.
regards
Mary

How is she doing?

It looks like your daughter was recently diagnosed.  My step daughter was diagnosed 3 weeks ago.  It is on her ribs pressing against her lungs.  We found out yesterday it is in her femur as well.  They biopsied it and she should begin chemo this week or next week.  They seem fairly confident that if the chemo can shrink the tumor in her chest that they can remove it.  We are so worried due to what we have read about prognosis if it has metasticized.  But there is a larger part of us that know Jesus is her ultimate healer and prayer can beat the odds.  How is your daughter doing?

 

Sincerely

Ashley Brewer

stepmom04 said:

Hi Mary,
My stepson was dx
Hi Mary,

My stepson was dx with Ewing's Sarcoma of the left pelvic in 08/2009 and under went tx at Md Anderson in Tx; he had there protocol and then proton therapy which is a radiation tx. He is post tx for 2 years and just has to be seen every 6 months now as of this past week.
As of note: my husbands father was irish!!

ewings

Check my note right below I wrote you back.

shelly9501 said:

Hi, I read your post about your brother having ES. I am so glad to hear that he has ignored what the doctor's have said, and continued to fight. My doctor's have never told me such things like
"oh, you only have a year,"etc etc. Maybe because mine is localized (only in my tibia) but the oncologists believe I will live and be fine. I think my chances are around 65-70%. The scary part is that there are only 2 other cases of Ewings ever treated at my place this year, and both had a relapse. I don't let that scare me too much though, I am going to keep fighting. Good luck to your brother, don't let him give up.He needs to have a strong will to live. Take Care,
Shelly:o)

Ewings

Hi Shelly, its been years, I would like to know how you

Are doing?? I am 25 years Out survivor Ewings of Spine and pelvis.

Have some walking problems now, numbness legs and feet all the time.

Neurologists did every test under the sun, said its long term radiation damage.

I am still here though! I am now 42.

Diana

Anyone please email me: diana.martin305@gmail.com

Brass said:

I was diagnosed with Ewing's
I was diagnosed with Ewing's Sarcoma two years ago (male, age 23 at the time, initial diagnosis could have also been PNET). By the time it was diagnosed the primary tumor had engulfed three of my ribs and was about the size of a softball (it had displaced many of the organs in my abdomen) as well has spread to a few dozen locations in the lungs and the left femur.

For treatment I received 6 rounds of VIDE chemo followed immediately by a chest wall resection of the three ribs, abdominal muscles and diaphragm. After a month of healing I underwent a Bone Marrow/Stem Cell Transplant (Busulfan, metaphalan, topotecan megatherapy, I was my own donor for the transplant) which hospitalized me for a month followed by 100 days of quarantine at home. After the 100 days I received approx. 6000 cCy electron radiation to my left femur as a precaution (the tumor appeared to be dead following chemo).

Currently I am in remission and just got a new job. Other than bearable pain in various places, the reconstruction of my right side, thinner hair and moderate kidney failure, I feel perfectly fine and the whole thing almost seems like just a bad dream. Going in for quarterly scans is still a little like being on trial for murder in Texas, but I'm getting used to it. I've even managed to gain back about 25 pounds (I lost 70 lbs in treatment).

It was a long journey but I got there. Even in a large city like Chicago, there were only a few Ewing's patients (2 girls came from Poland because the government-run healthcare was on strike apparently). I wish I could say the others were as fortunate as I have been so far, but you never know what's ahead with cancer. Your friend being young should probably respond better to treatment then an old man such as myself, and everyone's experience is different. I wish you and your friend good luck, I'm sorry such a young person should have to go through a thing like this.

Ewings Mestatic

My son has recently been diagnosed, he is 13,  his primary tumor is in his hip bone , 12cm, and a few spots around his body including his skull, ribs etc.

Up to our 8th round of chemo, we may be doing a similar treatment to yours. Just waiting to here.

I love hearing the happy stories! gives me hope..:)

Ewings survivor....

Shelly,   Saw your post, my daughter, Erin,  had Ewings at age 5.  She is now 34!  Two full years of aggressive chemo did take its toll.  Her heart is severely damaged and has had several bouts of heart failure.  She is now waiting for surgery for a internal fibulator and maybe a possible heart transplant.  She is not able to have children and her and her husband are trying to adopt.  We pray daily for her.  I am on EC board but occasionally stop in here.  I will pass on your post to her.   Best of luck to you.     GerryS

 

Anybody with Ewing's of sacrum?

This is my brother's story:     he had a normal life just like any kid of his age very happy and active, he is one my jungest  brothers one of twing brothers .   He started high school, in 2011 and around that time something seem wrong with him, he started limping and felling very bad pain from his left hip down to the bottom of his foot and sterted feeling very Sick and real tired, he couldn't walk for very long time and his backpack was suddendly to heavy for him. My mom did everything she could to find out what was wrong, she took him to every doctor she could find but no doctor would know exactly what was causing such a excruciating pain and my brother's health was deteriorating very fast, but after so many months trying to find aswers my mom finally found Children's hospital in Guatemala, city (where we was born ) in march 2012 at 17 yrs old he was diagnose with Ewing's sarcoma in sacrum bone  and started the treatments, right away I believe he had 20 sessions of quimo and forty of radiotherapy.  he was done with the  all the treatments may 2013, everybody was very optimistic when doctors said that the tumor wasn't there any more  but in some of the studies the had seen some spots in his left long but they said they were going to follow up... Time went by And he was doing so much better! he started walking and going to the bathroom on his own, no diapers, but about two moths ago he started felling sick again, doctors did all the tests they did at the beginning when he was first diagnose and found out the he had more spots and this time he also have them in his right long and 3 other tumors; in different parts of his body (spine, leg and the other one close to the long and the heart) he's currently  taking very strong medication to help with the pain, he can't walk anymore and he is back in the same place where he started, paralyzed from the waist down  the doctors said that they can't do anymore quimo or radiation on him, right know he is in alot of pain! I wish there was something we could fo for him and sometimes wonder if he was here in the USA he have better chances of life because of the technology is so advance here, surgery or even  trials,  i don't know.... But what  I know si that God is in control of everything and he gives him, my family and me strength to continue his fight against Ewings Sarcoma. My brother is 19 years old now and he's is full of dreams and he says that he wants to finish high school and he wants to serve God and help others going through the same.  We are praying for a miracle and hoping that one day they found a cure for this horrible disease. Thank you for taking your time to read this is there anyone with a similar story?  God bless us all!

mummymary said:

Ewing Sarcoma
Hi , my young daughter Sophie has just been diagnosed with Ewing Sarcoma 4 weeks ago and has 2 bouts of chemo. She is 19 yrs, very fit and the tumour is in her left scapula but spread to spine,pelvis and skull. Having said that my daughter is doing very well and will survive this awful disease. I would like to know your history and how long ago this happened and what treatment you had? I live in N.Ireland and any help would be appreciated.
regards
Mary

Ewings

Hello Mary. I am a 27 year survivor of ewings

Sarcoma. I was 15, was very active, had it in lower spine

Pelvis. Was great ever since but now

 walking problems, numbness in legs and limping. I now have an "AFO" device for my foot to help me walk.

No Recurrence. Cancer FREE still!Please email me here with any Questions.

Diana 

 

36 Year long-term Ewing's Survivor

36 year long-term survivor of a Ewing's Tumor in Left Fibula treated at Dana Farber's Jimmy Fund in about 1980.  This was treated with radiation therapy and Pulse-VAC chemotherapy protocol.  Long term effects are a chronic foot drop and muscle atrophy of lower left limb.  Have been able to do most sports and remain active.  Hope this helps.