Ewing's Sarcoma

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

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 said:

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

thought said:

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.

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 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)

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)

sporti1381 said:

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

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

CCS626 said:

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

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!

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

ShannonQ said:

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

paj said:

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

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