Ewing's Sarcoma

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  • michelletodd777
    michelletodd777 Member Posts: 8
    #62
    sharpsheep said:

    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

    P-NET
    I had P-NET as well in my 5th rib. would love to talk to other Ewings survivors
  • michelletodd777
    michelletodd777 Member Posts: 8
    #63
    LisaR415 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!

    I had it in my 5th rib. had
    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
  • michelletodd777
    michelletodd777 Member Posts: 8
    #64
    akraeling said:

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

    Postitive!!!
    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
  • michelletodd777
    michelletodd777 Member Posts: 8
    #65
    akraeling said:

    My 20 year old jut got
    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
    Chemo and blood transfusions and alot of them, but you will get through it!!!
  • rehan786
    rehan786 Member Posts: 1
    #66
    Ewings Sarcoma
    Hi,
    My 8 years old son has been diagnosed with Ewings on his left femur, he has gone throgh 7 cycles of Chemo VDC and IE alternatively, now we are preparing for surgery , i am very confused as some surgeons says that ALLOGRAFTING is a good option and some says that we should go for the IRON RODS

    pls anyone who has gone through this pls share your experience
  • LiberalCityGal
    LiberalCityGal Member Posts: 2
    #67
    Diagnosed with Ewing's Sarcoma
    Hey to all of you,

    I'm reading your stories and am glad I found this site, as Ewing's Sarcoma is a rare cancer and it is difficult to find people to relate to. I was diagnosed with Ewing's in July, and have gone through 6-cycles of chemo. I'm going through radiation right now, and will undergo a stem cell transplant in mid-January.

    My tumor is on left scapula. The tumors spread to the upper bones of my arms, the uppper bones of my legs, bone marrow in my lower back, and a little to my liver. After my 6-cycles of chemo, the only area left to really deal with is where the initial tumor was. I'm 1/3 of the way done with radiation, and it is going well so far. My shoulder area is just a little red, and I can handle that.

    I'm really nervous for my stem cell transplant. This will clear out any microscopic tumors in my bone marrow. Have any of you gone through a stem cell transplant?

    I hope you are all doing well :)

    Sarah
  • mummymary
    mummymary Member Posts: 3
    #68
    michelletodd777 said:

    Ewing survivor
    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

    Ewing Sarcoma
    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
  • mummymary
    mummymary Member Posts: 3
    #69
    LiberalCityGal said:

    Diagnosed with Ewing's Sarcoma
    Hey to all of you,

    I'm reading your stories and am glad I found this site, as Ewing's Sarcoma is a rare cancer and it is difficult to find people to relate to. I was diagnosed with Ewing's in July, and have gone through 6-cycles of chemo. I'm going through radiation right now, and will undergo a stem cell transplant in mid-January.

    My tumor is on left scapula. The tumors spread to the upper bones of my arms, the uppper bones of my legs, bone marrow in my lower back, and a little to my liver. After my 6-cycles of chemo, the only area left to really deal with is where the initial tumor was. I'm 1/3 of the way done with radiation, and it is going well so far. My shoulder area is just a little red, and I can handle that.

    I'm really nervous for my stem cell transplant. This will clear out any microscopic tumors in my bone marrow. Have any of you gone through a stem cell transplant?

    I hope you are all doing well :)

    Sarah

    ewing sarcoma
    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
  • hemanth
    hemanth Member Posts: 1
    #70
    Hello this is hemanth
    My
    Hello this is hemanth
    My friend's brother is also suffering with ewings sarcoma and tumor is near the kidney part.
    he 16 years old,can it be cured and we live in india.
    Also please tell me about your treatment and diagnosis.
    please reply soon, its really urgent
  • stepmom04
    stepmom04 Member Posts: 12
    #71
    michelletodd777 said:

    Ewing survivor
    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

    I'm also an RN and my
    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.
  • stepmom04
    stepmom04 Member Posts: 12
    #72
    mummymary said:

    Ewing Sarcoma
    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

    Hi Mary,
    My stepson was dx
    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!!
  • stepmom04
    stepmom04 Member Posts: 12
    #73
    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!

    If still interested, I'd
    If still interested, I'd love to chat!!!
  • stepmom04
    stepmom04 Member Posts: 12
    #74
    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!

    If still interested, I'd
    If still interested, I'd love to chat!!!
  • stepmom04
    stepmom04 Member Posts: 12
    #75
    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!

    If still interested, I'd
    If still interested, I'd love to chat!!!
  • shawnmcc
    shawnmcc Member Posts: 39
    #76
    hemanth said:

    Hello this is hemanth
    My
    Hello this is hemanth
    My friend's brother is also suffering with ewings sarcoma and tumor is near the kidney part.
    he 16 years old,can it be cured and we live in india.
    Also please tell me about your treatment and diagnosis.
    please reply soon, its really urgent

    I had ewings sarcoma. The
    I had ewings sarcoma. The only problem is I was with my girl friends house when I went into a coma. I was sent to a cancer hospital she was there trying to get a hold of my family. When the impossible happens and I was taken by air by mistake to a bunch of random hospitals. Then I ran away from the children’s hospital when I was 19 mistaken for a really tall 9 year old LOL. Now I have no proof of this happening. Even though I was in a coma for 9 months or more. Some strange old guy was in my place at home to. I went to a bone doctor again locally for several lumps that have been growing and I saw a old picture with the old dude on it LOL. Not sure why he was there. I know I complained about the pain before the coma maybe that’s why. So no proof my family wont believe me even if I told them. Plus a potentially problematic chemo port that is still there.

    But I still can tell you about my treatment. From what I can remember. Well the chemo port for the last 10 years hasn’t really bothered me. But I am still waiting to see what will happen with that. I know at times under the chemo it felt like I was light headed and kind of sick to my stomach at the same time I wanted to just run away and stop the treatment. Its not easy to finish the treatment with out some one helping and encouraging the person to finish treatment. I had no family and I wish I had it would have helped me continue being treated for the cancer and be done with it now. But now I have to face it once more and have to convince the doctors to do something about it which is much more difficult to do then you would think even with insurance.
  • shawnmcc
    shawnmcc Member Posts: 39
    #77
    rehan786 said:

    Ewings Sarcoma
    Hi,
    My 8 years old son has been diagnosed with Ewings on his left femur, he has gone throgh 7 cycles of Chemo VDC and IE alternatively, now we are preparing for surgery , i am very confused as some surgeons says that ALLOGRAFTING is a good option and some says that we should go for the IRON RODS

    pls anyone who has gone through this pls share your experience

    I had it

    I had it
  • parvin
    parvin Member Posts: 3
    #78
    mummymary said:

    ewing sarcoma
    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

    metastatic ewing sarcoma
    Hi mummymary

    my son has diagnosed by metastatic ewing sarcoma on his 6th left rib , lungs and his fumer bone, we were starting the chemo from 1 month ago and the tumor is already getting smaller but i'm so scared of it because i saw bad news everywhere about this cancer, please let me know about the surviving of this disease and how is sophie now, is she ok? everything is going well? please email me at starjenita@gmail.com
  • parvin
    parvin Member Posts: 3
    #79
    shawnmcc said:

    I had it

    I had it

    HI shawnmcc
    you said you had it, r u ok now? everything is ok with u? my son has metastatic ewing sarcoma and i'm so worry about it, please let me know at starjenita@gmail.com, thank u so much
  • parvin
    parvin Member Posts: 3
    #80
    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!!

    thanks

    hi
    please let me know is he ok now, my son has same cancer at stage 4 could u please tell me is he ok now? my email address is starjenita@gmail.com
  • kaybee022
    kaybee022 Member Posts: 1
    #81
    akraeling said:

    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

    my mom..
    hi, my mom is 35 years old &she has the same cancer. i'm really worried because i read online that it usually occurs in young men. do you know anything that could have caused it? my mom's really important to me.. i don't want to lose her to Cancer. please help.

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