Cancer Survivors Network

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)

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--

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

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----

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

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).

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.

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)

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)

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

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

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

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.

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!

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.

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??

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!

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.

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.

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

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

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

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

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

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

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

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

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

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.

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

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

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.

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

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.

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

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

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

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

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

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.

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

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

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.

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

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

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

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

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?????

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

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

Same here except I had it before and defiantly have it again. My leg is swollen and big like my left leg was except it is the right leg now. Plus I have formed round lumps in my leg and it has moved along the artery to my testicle from my pelvis bone. Last time they replaced part of my left hip bone and joint and did chemo therapy plus radiation. So hope fully it wont be as extensive this time. But the replacement doesn’t bother me that much even though all my weight is on it. Do to the other leg.

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