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Ewing's Sarcoma

shelly9501
Posts: 11
Joined: Sep 2002

Hi, I am a cancer survivor of Ewing's Sarcoma, AKA Bone Cancer, I am a 19 year old female and would love to share my story with others going through the same or similiar diagnosis of any type of bone cancer. Email
Skippy6270@aol.com
thanks,
Shelly:o)

susiep
Posts: 2
Joined: Mar 2005

hi, i am a ewing's sarcoma (soft tissue) survivor. I have been in remission for about 7 years now. please let me know if you would like to talk.

marysorens's picture
marysorens
Posts: 10
Joined: Feb 2005

Hi, there are a few stories from adult Ewing's Sarcoma survivors at hppt://abcsurvivors.net. We are always looking for others to share their stories, or you can join our support group.

Much HOPE!
Mary

AuthorUnknown
Posts: 1563
Joined: May 2006

My brother has very aggressive Ewing. I would love to speak with you. my address is carolina171917@yahoo.com

dl2z12
Posts: 1
Joined: Oct 2014

Hi, I am also getting some information.

command line ftp

Autie
Posts: 1
Joined: Oct 2005

Hello
I know this is a weird circumstance but my mother was diagnosed with Ewings Sarcoma about 6 months ago.... It aparently is very rare in women her age to get this kind of cancer. I love her with all my heart and I am looking for someone to maybe give me advice or steps that I can take to help her beat this thing.
thank you
my e-mail is autumn9@telus.net please respond

gimpy_girl
Posts: 2
Joined: Sep 2008

Hey there I am a 22 f who has been in remission from ES for 2 years now. Mine was in my tibia and I had a full knee replacement. Get in touch w/ me! perko.stephanie@yahoo.com

KylieSeitz
Posts: 6
Joined: Nov 2008

My daughter is four and she was just diagnosed 11/6/08 with Ewings in her right femur. Just completed our first round of chemo. Will look at surgery in Jan2009.

alsm
Posts: 3
Joined: Apr 2007

How is your daughter doing? I had mine in my left femur 33 years ago. Hope all is well!

angelart
Posts: 7
Joined: May 2009

Hello,
I'm fairly new to this site. I signed up hoping to chat with others who may have had similar experiances to share. As it is hard to find others with my kind of cancer. At 11 years old I was diagnosed with Desmoplastic round cell cancer of the soft tissue. At the time it was 1995 and there had only been 12 others in the u.s. diagnosed with the same cancer. With a series of different chemo's I went in to remission for 10, and I had a relapse. This time I was told that the cancer I had is rare and aggressive and a variation of a cancer called Ewing's Sarcoma. We tried a different kind of treatment and radiation. And was able to go a year and it came back. Currently I just had my last surgery and treatment of November of last year and have been cancer free for the last few months. We are hoping for the best but its been really hard for me the last few months, due to the mental scarring that wont heal. I'm really hoping that by sharing my own experiances with this cancer, and reading others that I can really gain a new perspective and help me understand things with a better frame of mind. I would really enjoy talking to anyone willing to share their experiances.

Email: angelart83@yahoo.com

alsm
Posts: 3
Joined: Apr 2007

Would you like me to e-mail you? I had Ewings Sarcoma 33 years ago, I'm a survivor. Let me know and I will write you.

angelart
Posts: 7
Joined: May 2009

Yes I would like to hear about your experiances with it! Thank you so much!

bobcummings
Posts: 2
Joined: Jun 2009

Hello,
I am ES survivor of 28 years now. I was diagnosed at 16 years old in May of 1981. I had 6 weeks of radiation, followed by 2 years of chemotherapy. Chemotherapy consisted of Cytoxan, Vincristine, and Adriamycin administered every three weeks. My tumor was in my left hip and was very agressive. The doctors gave me 50% chance to make it six months. I became quite sick and very depressed during chemotherapy, but I used hypnotherapy and it really helped. The radiation caused my leg to break and then they put a steel rod my femur. I was on crutches for nearly five years. I still walk with a limp, but no crutches. Last December I walked a half marathon with my wife in Las Vegas. I never would have thought I could do something like that. I have recently become active in the Relay for Life and it has been great. I would gladly talk with you or anyone. Please email me at bcummings101@gmail.com.

Bob

AnnabelK
Posts: 2
Joined: Jul 2009

Hi,

I have just recently been diagnosed with Ewing sarcoma of my larynx. I know that it is a rare cancer to begin with, affecting only 250 people per year, but I am only the second person in the world to have this cancer in my larynx. The other case was a 74 year old Japanese man. I feel a bit like a lab rat! The doctors are running all sorts of body scans to make sure that it isn't in other areas because it typically is located in bones. If my cancer is localized to my larynx then the doctors will give me chemotherapy and possible radiation if the chemo doesn't shrink the tumor, then ultimately, surgery. There is a possibility that I will lose total use of my voice box if they have to take out my larynx. The doctors will do everything they can to make sure this will not happen because I am only 21 years old. Right now the only thing I can do is be positive :-) I am looking to talk with anyone about their experience. Feel free to share!

Annabel

LisaR415
Posts: 1
Joined: Nov 2009

I wanted to let you know that my daughter was diagnoised with Ewings when she was 7 years old (of the 10th rib). She underwent chemo and had a chestwall resection, which included the removal of 3 ribs. Today she is a 13 year old, loving middle school, happy, healthy,loving life, she is in the marching band and on the swim team. My daughter has also competed in All Star cheerleading. If there is anything we can do for you please let us know. There is life after cancer!

adkinsardrey
Posts: 2
Joined: Nov 2009

Lisa,

How wonderful to hear such good news about your daughter! I would love to hear more. We are just beginning Noah's treatment plan today. Chemo for three days, off two weeks, chemo for five days, off two weeks...after thirteen rounds, second surgery...after 15 rounds, radiation as well. It makes me tired just thinking about it. I'm staying fairly positive about the final outcome but I am not going to pretend like the road to getting there will be easy. I have a feeling we are in for some super tough times. A story like yours will really help us keep our spirits up. I hope to talk to you more!

Sincerely,
Holly

future cancer s...
Posts: 1
Joined: Feb 2010

Everyone-
My 9 year old daughter started complaining 2-3 weeks ago of pain in her lift tibia(bone under the knee). We thought it was just a pulled muscle, so we didn't go to the doctor right away. Last week week(2 weeks in) we took her to the doctor. The doctor took an x-ray, saw something, referred to the MRI. Took the MRI about 4 days later, the radiologist suggested that we be referred to an Orthopedist, and we were. We saw the Orthopedist 3 days ago, and when she looked at the MRI film, she said it was a non-benine tumor that is affecting the bone and the tissue. She had us take a chest x-ray, and also took blood. The chest x-ray came out clear, but we haven't heard about the blood results yet. Ewings Sarcoma is one of the 3 cancers the doctor really thinks it is. We go in tomorrow for a CT scan and to meet with the Urologist and the Orthopedist again. We have a biopsy the day after tomorrow. Reading the survivor stories are very uplifting, because as you all know, the doctors have to be very blunt, and we felt like our daughter was just given a death sentence! Please keep the encouraging posts coming! She's my baby, and I don't want to lose her!

-future cancer survivors mom

chrissie1
Posts: 6
Joined: Apr 2010

How is your daughter doing?

I had Ewings Sarcoma at 14, and went through chemo/radiation. I am now 22 years old, cancer free.

Let me know if anyone has any questions.

s30464
Posts: 5
Joined: May 2010

Hi Chrissie1- Thank you for posting and giving us mom's hope to beat this cancer. I think I saw from another post that your Ewings Sacoma was in the sacrum. Would love to talk.
Sue

michelletodd777
Posts: 8
Joined: Nov 2011

I had it in my 5th rib. had surgery after 6 months of chemo and then 6 more months of chemo.. I was pregnant when diagnosed. I just now found this site and it has almost been 3 years since my last chemo treatment. would love to talk

s30464
Posts: 5
Joined: May 2010

Hi - Would love to hear more on your story. Hope all is well!

zubin.mujawar
Posts: 5
Joined: Jun 2010

i was an "ewings sarcoma" (left femur bone ) patient 15 years back.
i have many side effects due to radiation.
does radiation causes so many side effects ?

any information you can give me abt radiation side effects will be appriciated

email: zubin.mujawar1@gmail.com

Sona
Posts: 1
Joined: Jan 2011

My son got diagnosed with Ewing's Sarcoma in October 2010. He is 16 years old. He already got 6 weeks of radiation and now is getting 14 cycles of chemo (EI then VDC alternating cycles). Please tell me what helped you pull thru this ordeal. Any of you with Stage IV who kickedd this out? How did prayer and faith help? Thanks.

nemom4
Posts: 15
Joined: Mar 2010

Sorry to hear about your son. I finished treatments last summer. I never had radiation though. Is he on 3 day 5 day chemo schedule. I had the same chemo as him. I personally feel that faith and prayers and positive attitude do help a great deal. I was 24 when diagnose will say prayer for your son and family.

Cancer Sucks
Posts: 2
Joined: Feb 2011

Hi there - my son too was diagnosed late 2010 and is in stage IV. Are there any stories or information that you can share with me? We are ready to kick this cancer's butt!!

thanks

MLC
Posts: 4
Joined: Sep 2011

I am 32yrs free of Ewings. It's butt can be kicked! Keep hope everyone.

akraeling
Posts: 3
Joined: Nov 2011

angelangelina123@aol.com my 20 yr old just duagnosed. OMG what now?

michelletodd777
Posts: 8
Joined: Nov 2011

Stay positive and stay strong. I was pregnant when diagnosed and have a healthy almost 4yo daughter. If you need to talk email me at michelletodd777@gmail.com

akraeling
Posts: 3
Joined: Nov 2011

My 20 year old jut got diagnosed. 3 docs told me this was an old collar bone fracture and to ice it! NOW this!!!!! Its also in a couple of other small areas NOT in the bone marrow and he has to do chemo. I fee; like my whole world ha just crashed down. This kid is my life. Now what? Sitting in hosp now at stony brook univ NY. email Angelangelina123@aol.com can anyone tell me anything b4 I have a heart attck?????

michelletodd777
Posts: 8
Joined: Nov 2011

Chemo and blood transfusions and alot of them, but you will get through it!!!

parvin
Posts: 3
Joined: Jun 2012

please let me know is he ok now, my son has same cancer at stage 4 could u please tell me is he ok now? my email address is starjenita@gmail.com

akraeling
Posts: 3
Joined: Nov 2011

hello-i am sitting in the hosputal and just got news that my 20 yr old has ewings. i am in a daze. my email is angelangelina123@aol.com. can we talk sometime? hope all is getting better with you xoxo

kaybee022
Posts: 1
Joined: Jun 2012

hi, my mom is 35 years old &she has the same cancer. i'm really worried because i read online that it usually occurs in young men. do you know anything that could have caused it? my mom's really important to me.. i don't want to lose her to Cancer. please help.

rehan786
Posts: 1
Joined: Nov 2011

Hi,
My 8 years old son has been diagnosed with Ewings on his left femur, he has gone throgh 7 cycles of Chemo VDC and IE alternatively, now we are preparing for surgery , i am very confused as some surgeons says that ALLOGRAFTING is a good option and some says that we should go for the IRON RODS

pls anyone who has gone through this pls share your experience

shawnmcc
Posts: 21
Joined: Nov 2011

I had it

parvin
Posts: 3
Joined: Jun 2012

you said you had it, r u ok now? everything is ok with u? my son has metastatic ewing sarcoma and i'm so worry about it, please let me know at starjenita@gmail.com, thank u so much

shawnmcc
Posts: 21
Joined: Nov 2011

Right now I am looking into whether I got it back again. Right now my right testicle has a lump near it and a lump on my right hip and my glands under my chin are now swollen. So I probably have it back or side effects to the chemo in the past.

 

LiberalCityGal's picture
LiberalCityGal
Posts: 2
Joined: Nov 2011

Hey to all of you,

I'm reading your stories and am glad I found this site, as Ewing's Sarcoma is a rare cancer and it is difficult to find people to relate to. I was diagnosed with Ewing's in July, and have gone through 6-cycles of chemo. I'm going through radiation right now, and will undergo a stem cell transplant in mid-January.

My tumor is on left scapula. The tumors spread to the upper bones of my arms, the uppper bones of my legs, bone marrow in my lower back, and a little to my liver. After my 6-cycles of chemo, the only area left to really deal with is where the initial tumor was. I'm 1/3 of the way done with radiation, and it is going well so far. My shoulder area is just a little red, and I can handle that.

I'm really nervous for my stem cell transplant. This will clear out any microscopic tumors in my bone marrow. Have any of you gone through a stem cell transplant?

I hope you are all doing well :)

Sarah

mummymary
Posts: 3
Joined: Dec 2011

Hi Sarah, my daughter Sophie was diagnosed 4 weeks ago with a tumour in her left scapula and the metastastis is in the pelvis, spine and skull. However she has had 2 cycles of chemo and prior to her second cycle the oncologist told her that the tumour had shrunk. Sophie seems to be okay, only had trauma in the first cycle by having an adverse reaction to ifosfamide but she shocked the doctors and nurses by coming out of her coma 12 hours later and remembering every single detail possible. She is a fighter and we know that with prayer hope and faith we will win! Please email me with how you are getting on? strutt@btinternet.com
regards
mummymary

parvin
Posts: 3
Joined: Jun 2012

Hi mummymary

my son has diagnosed by metastatic ewing sarcoma on his 6th left rib , lungs and his fumer bone, we were starting the chemo from 1 month ago and the tumor is already getting smaller but i'm so scared of it because i saw bad news everywhere about this cancer, please let me know about the surviving of this disease and how is sophie now, is she ok? everything is going well? please email me at starjenita@gmail.com

hemanth
Posts: 1
Joined: Jan 2012

Hello this is hemanth
My friend's brother is also suffering with ewings sarcoma and tumor is near the kidney part.
he 16 years old,can it be cured and we live in india.
Also please tell me about your treatment and diagnosis.
please reply soon, its really urgent

shawnmcc
Posts: 21
Joined: Nov 2011

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.

Sarah_Dee
Posts: 1
Joined: Sep 2012

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

fisher321
Posts: 4
Joined: Jan 2013
Radiation and Chemotherapy Facts you are not supposed to know as told by Cancer Specialists, Medical Doctors and 
the former Commissioner of the FDA!

 Help to get the cancer under control will be found at: about-lung-breast-cancer-cure.com

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? 

Cossy
Posts: 3
Joined: Nov 2013

My brother's came back after all the treatments about 5 months later and now he have it in 3 different places :(  doctors said that they can.t do anything else for him :'( he's just taking medication for the pain, nothing else! the pain is getting worse everyday and the medication some times doesn't help.  I wish we could do something to help him.... And how are you now??

Marty13's picture
Marty13
Posts: 4
Joined: Jun 2005

Hi, I was diagnosed with E.S. on April 22, 1990 at the age of 12. It was located in my right femur also.

I am about to celebrate my 23rd year of being cancer free!!! With No Relapse!!!

If you'd like to read my story please feel free to stop by my page. If any questions I'd be happy to help if I can.

***UPDATE***

I'm expecting my 2nd little miracle angel in Feb 2014.Smile Can't wait to tell my almost 4 yr son if he's gonna have a

baby sister or a baby brother. I find out in a few weeks. Not all the bad news docs give you is true. They said I'd

never have children. Thank God they were wrong. My son & baby bun are both healthy!!!!

 

Cossy
Posts: 3
Joined: Nov 2013

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!

GerryS's picture
GerryS
Posts: 240
Joined: Aug 2010

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

 

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