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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)

hummingbyrd's picture
hummingbyrd
Posts: 965
Joined: Sep 2002

Hi Shelly:o, I have had breast cancer with bone mets to my right arm and low back. I have a special place in my heart for anyone with Ewing's Sarcoma. One day back in May I was really down in the dumps, so I was praying for God to uplift my spirits. At that moment the doorbell rang, it was a young girl selling The Houston Chronicle. I call her Peppermint Patti, she had the prettiest red curls. I told her I couldn't buy the paper I have Parkinson's and Breast cancer and am on disability. She said she understood she had been diagnosed w/ Ewing's sarcoma, they told her it was slow growing, non-aggressive and easy to cure. However after surgery when she woke up they said it turned out to be fast growing, aggressive and probably not cureable. She said she had surgery, chemo, and lost all her hair, but it was the power of prayer that healed her. I said I understand I have cards "Conquering Cancer Through Christ" and I witness to people. She said "No, you don't understand, I had surgery, and chemo, but it was my faith in God and the power of prayer that healed me." She's been in remission for 3 years and doing well. Anyway we hugged and said God bless and goodbye. I shut the door and went back to my praying, feeling much better already. Then I thought duh! I don't understand God had sent this girl to my door to reinforce my faith. Thank God for 'Peppermint Patti' God bless, TByrd

shelly9501
Posts: 11
Joined: Sep 2002

Hi TByrd!
That was a very interesting story. I guess praying really does help and I thanks to your true story I plan to pray more than I did before. Good luck with everything, Shelly:o)

sporti1381
Posts: 7
Joined: Oct 2002

I'm a survivor of bone cancer as well (High Grade Osteosarcoma) and I was wondering how long it took for you to get back on your feet without a walker, cane, brace..after the surgery? Did you have frustrations from not being able to do what you use to? How long were you in physical therapy? I hope you are doing well and it's true prayers are answered everyday. God Bless You.
Somer

shelly9501
Posts: 11
Joined: Sep 2002

Hi Somer,
I had a limb-sparing surgery done in May of this year (2002) My doctor is annoying me so much! He tells me it is still necessary to use crutches, and it is now November. I don't plan to be off crutches and at LEAST limping around until probably February. It is very frustrating. Now when I am just hanging around the house, I limp around instead.
As for the chemo, it will be a full year of chemo in Feb, and then I will be officially done and :fingers crossed: I will be in remission!
Take care and if you have any more questions just ask!
---Shelly--

sporti1381
Posts: 7
Joined: Oct 2002

Hi Shelly~
I don't know why, but for some reason I thought you were further along, but in any case thank you for taking the time to respond to the posting. My limb-salvage surgery was alomst a year ago, and I still use a brace and a walker, so the haul ahead of you is great and a tremendous amount of effort on physical therapy is yet to come, even though I'm sure you are going trhough it now. I wish you the best of luck and a speedy recovery. Trust me, I know it's more than frustrating. God Bless You.

Somer

triciamoore87
Posts: 1
Joined: Mar 2008

Hi Shelly, my step son will soon be going through limb sparing surgery and i was look for some insight on what this experience is going to be like for him
----Tricia----

Victor69
Posts: 2
Joined: Jan 2004

Somer, when you get back on your feet depends on you. Believe it our not when I was operated I was 13yrs old and the day after my operation I had on a splint rapped with 2 ace bandages and I walked while I shot pool in the rec room. Yes I was on a wheel chair, but go up from it. 6 months after my operation I walked around without any aid what so ever. Yes rehab was hard but I was determined to walk and get back to playing what I love and thats baseball. A year and a half after my operation I played my first High school baseball game after my 3 yr ordeal.

Victor

lmsa
Posts: 1
Joined: Dec 2008

I hope I'm commenting in the right way; this is my first post, and I'm replying to someone asking someone else a question -- hope I'm not offending anyone....I had Hodgkins Lymphoma when I was 12. When I was 29, I was diagnosed with a sarcoma on the tip of my femur. I was told this was pretty rare, and I really didn't have anyone to compare stories. That was three years ago (I just found this sight tonight -- I wish I had found it years ago). I had three months of chemo (the kind that requires a week of hospitalization for each treatment), and then had knee replacement and reconstruction. I was told my limp would be lasting and I would probably not be able to return to work full time (I teach, so there's no such thing as part time). I finished with physical therapy, closely following my therapist's instructions and doing those exercises several times each day. I was able to loose my cane (I found it much more offensive than my crutches) two months earlier than planned, and I'm back in my third grade classroom everyday. I can even wear cute, not so sensible shoes some days. Following the directions of my therapist and doctors (second only to prayer) helped me recover much more quickly than oringinally thought. Also, I think medical providers give the worst case scenerio so that you're not extremely disappointed (like telling you it will take longer to recover).

thought
Posts: 1
Joined: Dec 2002

hello shelly, my brother has ewing sarcoma(this is breaking my heart) for two years now. the team of doctors have told me from beginging that he would not live longer than 6 months. well 2 years later he is still here and trying to be strong he underwent chemo and radiation. he just finished radiation and now the doctors are telling me the same thing. I pray all the time. My question to you is did they ever say anything like that to you.

stlrmn's picture
stlrmn
Posts: 2
Joined: Dec 2002

I was diagnosed with Ewing's back on February 12, 1978 when I was eight years old. I went through exploratory surgery that day and my parents were told that I had a 5% chance to live. The tumor engulfed much of my upper torso. Anyway, I went through about 2-1/2 years of chemo and about 6 months of radiation. The tumor eventually disappeared.

I think that the most important thing for you and your brother is to keep your faith,stay strong and keep a positive mindset. Someone once told me that two things can not fill the same space so stay positive and the negatives will disappear. I have lived by that idea and with that, so will your brother. Let me know how things are going.

shelly9501
Posts: 11
Joined: Sep 2002

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)

emmie
Posts: 2
Joined: Dec 2002

hey shelly,
I was told I had ES when I was fifteen, and like in your case it was localized to a bone in my leg; my fibula. I'm 18 now and have been in remission for two years. I know it is hard, and I can't say it's going to get easier any time soon, but hold on. I can tell you are a very strong person, much stronger than you probably even recognize. If you need someone to talk to, please e-mail me at cworkman@presby.edu I wish you much love and peace
caroline (emmie)

AuthorUnknown
Posts: 1564
Joined: May 2006

My brother has had this cancer since February 2004. he had quemo, surgery and radiation. three tumors came back and the doctors are telling us to expect the worst. if anybody knows about anything that we can do please write to me. it would mean the world to hear from somebody. my address is carolina171917@yahoo.com.
Thanks

michelletodd777
Posts: 8
Joined: Nov 2011

I was and pregnant when diagnosed... It was in my 5th rib.... I am a Registered Nurse now and would like to talk to other Ewing survivors

mummymary
Posts: 3
Joined: Dec 2011

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

stepmom04
Posts: 12
Joined: Apr 2010

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!!

dmartinemtp's picture
dmartinemtp
Posts: 8
Joined: Jan 2013

Check my note right below I wrote you back.

ashleybrooke
Posts: 2
Joined: Feb 2013

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

dmartinemtp's picture
dmartinemtp
Posts: 8
Joined: Jan 2013

Hello Mary. I am a 25 year survivor of ewings

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

Pelvis. Was great ever since but now

Bladder, walking problems, numbness in legs and limping.

No Recurrence. Please email me with any Questions.

Diana 

Diana.martin305@gmail.com

stepmom04
Posts: 12
Joined: Apr 2010

I'm also an RN and my stepson was DX at age 16 with ES and underwent tx at Md anderson. He's now 19 and is post tx 2 yrs.

mike3892002's picture
mike3892002
Posts: 4
Joined: Sep 2003

Hi:

If you would like to talk about Ewings in the ribs...I had it 30 plus years ago...at age 16, rib soft tissue sarcoma Ewings.  Radiation 6 weeks, chemo 9 months, surgery.  30 years remsission

mike3892002@yahoo.com

dmartinemtp's picture
dmartinemtp
Posts: 8
Joined: Jan 2013

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

dmartinemtp's picture
dmartinemtp
Posts: 8
Joined: Jan 2013

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!

Diana

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

1maladywc
Posts: 9
Joined: May 2010

When I 1st started my run for life with cancer, I checked out the chemo Dr's ect. If one told me how long I was going to live. Only God knows that. I find one that is looking to cure me. Not tell me when I'm going to die.I know that death is right up there with every thing else. But so is the want to live and the power of that/ No one Dr or any one can say you will die in 3 months or 3 years. Just take one day at a time. Make it your best, tomorrow will take care of it self.
2001 1st breast cancer, 2007 lump on neck cancer, 2008 bone cancer, 2010 lump nodes under arm lost use of my arm. I went the chemo and raid route.lost my hair and was as sick as one could be. I never once gave up. I'm now taking tykerb and xeloda to swrink the lymps under my arm. hope to get the use of it back. changed Dr's. Hope I'm on the right path. Keep the faith, sense of humor and love life.
Due to staying with my bone Dr. and chemo DR and telling them for 2 years I was losing the use of my arm. I did lose the use of my arm. they did not know about the lymp nodes pussing on my nerves to my arm. I had all kinds of tests done. I don't think they even read the test.
Now I'm at the cancer center in Zion Ill. They found the cause, now for the cure.
Hang in there. let me know how you all are doing.

bgcntryzj
Posts: 2
Joined: Nov 2003

I was diagnosed when I was a SR. in High School. I'm 21 now and I've been in remission for almost 1 year. It was the hardest thing for me because I didn't get to do what most SR. in High School get to do. I was in the hospital alot because the tumor was located on the 5th and 6th rib on my back. After 3 rounds of chemo they decided to remove the tumor and the two ribs. They just removed the back side of them. After that I went through 20 or so more treatments with radiation. After I was done with chemo the Gortex support they put in where they removed the ribs got infected and an abcess formed. So needless to say they had to go in once again and remove the Gortex. It has been hard because I was going to school when they did the second surgery and had to quit. Now I find it hard to get a good job. I think alot of times when employers find out about anyone having cancer it scares them. At the time I'm working for my dad which is great because I know he won't get scared of it coming back and fire me. And my girlfriend and I are talking about getting married but I'm afraid that I won't be able to find any kind of insurance that covers the cancer. I've been looking for along time for a company that would cover me.

adkinsardrey
Posts: 2
Joined: Nov 2009

I am trying my darnest to find someone with PNET. My dear friend who is 10 years old just had a large tumor removed from his chest and will start chemo this week. He also will have a rib removed. Sounds so similar. Do you have PNET? Your post is from 2003. I hope that you are doing fabulously well!

Brass
Posts: 1
Joined: Dec 2009

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.

Ros7's picture
Ros7
Posts: 2
Joined: Oct 2013

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..:)

Ros7's picture
Ros7
Posts: 2
Joined: Oct 2013

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..:)

stepmom04
Posts: 12
Joined: Apr 2010

If still interested, I'd love to chat!!!

stepmom04
Posts: 12
Joined: Apr 2010

If still interested, I'd love to chat!!!

stepmom04
Posts: 12
Joined: Apr 2010

If still interested, I'd love to chat!!!

ashleybrooke
Posts: 2
Joined: Feb 2013

Your post is from 2009.  How is your friend doing?  My step daughter was just diagnosed.  It is in her ribs and leg.  Is that PNET?

michelletodd777
Posts: 8
Joined: Nov 2011

My 5 th rib too!! and they took the 5th rib and half of my fourth rib. Have you had problems where the ribs are missing??

CCS626
Posts: 1
Joined: Feb 2004

Hey, just wanted to let you know I was diagnosed with ewings at the age of 17 and then again at 19. I am now 24 and waiting for this april when i will be in remission for my fifth year. I would love to chat... my email is nikki62679@aol.com

ALMS
Posts: 4
Joined: Mar 2004

Congradulations on your remission. I had Ewings Sarcoma 28 years ago and have been free of it since. I had it in my left leg, lower femur bone and went through radiation and Chemo at 16 years of age. I'm now 44 years old, married almost 14 years, and have two children of my own, a 7 year old and 6 year old, both healthy!

paj
Posts: 2
Joined: Mar 2004

I am a mom of a 22 year old son that has just been dx. with Ewing's. He is currently undergoing chemotherapy. It started in his hip and went to the foot and lungs. He has to have 48 weeks of chemo. He is brave and so strong. Let me know how extensive your disease was. I need to hear from "SURVIVORS". The doctors have taken his sperm and it is being "saved" so I think he has a future. I just need to hear some positives. Thank you for your reply.

eeyoredagaboo
Posts: 1
Joined: Jun 2004

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.

cathey
Posts: 1
Joined: Apr 2005

My son is 35 and was diagosed with ewing sacorma last July and has been undergoing chemo since August and has went through 6 weeks of radiation. He has it in his right femur bone and is about7 cm big. The cancer hasn't spread anywhere else but the tumor has not shrunk either. Did your tumor shrink? The radiologist said this was normal and the only way we could tell if the cancer was gone is if the tumor doesn't grow anymore. I have faith in the lord that my son will go into remission. It is nice to hear from survivors of this cancer. My prayers are with you. Cathey

chemoguy
Posts: 2
Joined: Jan 2011

cathey its been along time since you posted this comment!
i wish you son doing very well now.i pray for him and for everyone.
dear cathey i am also living with the same kind of cancer!
please let me know that you are still here so we can talk and discuss somethings
or please you can e-mail me at psin1948@yahoo.com

thanks

dmartinemtp's picture
dmartinemtp
Posts: 8
Joined: Jan 2013

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.

ShannonQ
Posts: 1
Joined: May 2004

Hey, so glad to read about your wonderful success story. I am a 26 year old female recently diagnosed (March 2004) with Ewings in my left scapula. It is localized and about 4.5cm. I am going through my second round of chemo. They plan to do surgery in a few months and then on to more chemo. I am being treated at MVC - Medical College of Virginia. I have been very sick and weak at times, but thank God I have good days too. With Ewings being such a rare form of cancer, it can be very difficult finding someone to talk to that is, or has, experienced that same thing I am. I would love to hear from you again. Here's my email address Quesensm@aol.com

sharpsheep
Posts: 1
Joined: May 2004

hi, i am diagnosis of PNET Ewing's sarcoma last november. now i am in the second line of chemo now. I would like to know how are you doing. My e-mail address is sharpsheep@yahoo.com.cn

michelletodd777
Posts: 8
Joined: Nov 2011

I had P-NET as well in my 5th rib. would love to talk to other Ewings survivors

Dewa's picture
Dewa
Posts: 3
Joined: Jul 2004

hey nikki, i was diagnosed with ewings in april too i was 14 at that time. i had it in 2 places but now i have it in 5 or 5 places, i guess its growing every year.anyways i would love to hear back from you me email is dewa_aish@yahoo.com

carrie23
Posts: 1
Joined: Jun 2005

Hey nikki I was 20 when i was diagnosed with ewings and it was located in my pelvic bone. I had limb sparing surgery in dec of 2003 and then it was discovered back around my tailbone in april of 2005. I am 23 now. I would love to talk to someone else who has delt with this twice or anyone else who would like to chat. Email me at carrielynn527@hotmail.com

paj
Posts: 2
Joined: Mar 2004

Hi there. My 22 year old son was just diagnosed with Ewing's sarcoma. He is on his third chemotherapy. He is doing pretty well. It started in his hip, went to the foot and also lungs. The tumors are responding to the chemo. Would love to chat. Mom

Debbie123
Posts: 1
Joined: Jan 2005

Hi. My 18 year old daughter was recently diagnosed with Ewings. I would love to discuss it. How is your son?

megmal
Posts: 2
Joined: Jul 2005

Hi Debbie-I am a Ewings survivor, I was diagnosed 2 days after my 16th birthday-I am now 25 how is your daughter? I would love to talk, my email me MMalagari@gmail.com

Dewa's picture
Dewa
Posts: 3
Joined: Jul 2004

hi, i am also diagnosed with ewings sarcome and i was looking for someone who has this cancer. i would love to hear about your story and i would like to get some information from you too,

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