Ewing's Sarcoma

Ewings Sarcoma

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 said:

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
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.

future cancer survivors mom said:

Daughter going in for CT Scan
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
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.

chrissie1 said:

How
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
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

Ewings
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

cathey said:

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

hi
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

Sona said:

Son with Ewing's Sarcoma
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.

Sorry to hear about your
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.

Sona said:

Son with Ewing's Sarcoma
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.

MY SON ALSO DIAGNOSED
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

MLC said:

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

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

bgcntryzj said:

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.

Me Too
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??