Ewing's Sarcoma
Comments
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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!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.
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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!0 -
Life After CancerLisaR415 said: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!
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,
Holly0 -
I was diagnosed with Ewing'sadkinsardrey 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 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.0 -
Daughter going in for CT Scanadkinsardrey said:Life After Cancer
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 mom0 -
HowDaughter 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 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.0 -
Hi Chrissie1- Thank you forchrissie1 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 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.
Sue0 -
change Dr/sthought 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.
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.0 -
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.com0 -
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.0 -
hicathey 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
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
thanks0 -
Son with Ewing's SarcomaSona 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.
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!!
thanks0 -
Sorry to hear about yourSona 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 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.0 -
I am 32yrs free of Ewings. It's butt can be kicked! Keep hope everyone.Cancer Sucks said:Son with Ewing's Sarcoma
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!!
thanks0 -
MY SON ALSO DIAGNOSEDSona 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.
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 xoxo0 -
My 20 year old jut gotCancer Sucks said:Son with Ewing's Sarcoma
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
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?????0 -
Ewing survivorshelly9501 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)
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 survivors0 -
Me Toobgcntryzj 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.
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??0
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