Ewing Sarcoma

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  • leposierrasp367
    leposierrasp367 Member Posts: 4
    #22
    katy04 said:

    i am 17, and i have a free standing tumor in my chest cavity. i was in icu for 40 days on the respirator because the tumor had taken over my entire right lung and was pushing against my esouphogus and my stomach. i lost 70 pds. i go through 5 and 2 day chemos w/ 2 diffrent kinds. i had vincristin the first time but i had a allergic reaction and got naropathy in my feet... iit has to do w/ brain damage...if any one wants to talk email me... at katy04@artlover.com

    I am 30 years old and in
    I am 30 years old and in remission from Ewing's Sarcoma in my left tibia. Hope to get treatment from here.

    - bowel cancer symptoms and bumps on vagina
  • Wandajp
    Wandajp Member Posts: 1
    #23
    leposierrasp367 said:

    I am 30 years old and in
    I am 30 years old and in remission from Ewing's Sarcoma in my left tibia. Hope to get treatment from here.

    - bowel cancer symptoms and bumps on vagina

    Ewing sarcoma
    My husband finished 7 months of chemo in Sept 2011 and has his abdominal CT tomorrow, the first since he has been off of chemo for 3 months. He had the sarcoma on his left thigh. He has done great but was in the hospital 3x during treatment due to low counts and fevers. He is back to working 12 hrs a day and has more energy then I do!
    Hope you are doing well.
  • Chanteuz
    Chanteuz Member Posts: 6
    #24
    kmarostica said:

    I had the protocol 4 years ago. I'd be happy to answer any questions you have. Let me say I hope your protocol does not require Adrymiacin right before the radiation treatments.I have been told they have taken it out since I had the treatment. I'm Kelly and will check this message

    Protocols
    Hi! I'm really interested in what you have to say about your experience. I'm going into a long chemo after surgery starting 8/13 and i'm fearful.... I guess I'll lose my hair. What's the standard set of drugs for Ewings? I'm getting that and what can I expect? Please fill me in! i'm 58 years old and my Ewings must have been sitting dormant for a long long time... this is a rare case and I'm no spring chicken! Thanks
  • Nina W
    Nina W Member Posts: 3
    #25
    Chanteuz said:

    Protocols
    Hi! I'm really interested in what you have to say about your experience. I'm going into a long chemo after surgery starting 8/13 and i'm fearful.... I guess I'll lose my hair. What's the standard set of drugs for Ewings? I'm getting that and what can I expect? Please fill me in! i'm 58 years old and my Ewings must have been sitting dormant for a long long time... this is a rare case and I'm no spring chicken! Thanks

    Ewings
    Hi
    Im 49 years old and finished treatment for Ewings sarcoma in my right humerus 12 months ago, I had 14 rounds of extensive chemotherapy. Im in Australia and dont know anyone else who has had a Ewings. I had my humerus bone removed, I had radiation as well.

    Nina
  • Nina W
    Nina W Member Posts: 3
    #26
    Chanteuz said:

    Protocols
    Hi! I'm really interested in what you have to say about your experience. I'm going into a long chemo after surgery starting 8/13 and i'm fearful.... I guess I'll lose my hair. What's the standard set of drugs for Ewings? I'm getting that and what can I expect? Please fill me in! i'm 58 years old and my Ewings must have been sitting dormant for a long long time... this is a rare case and I'm no spring chicken! Thanks

    Ewings
    Hi
    Im 49 years old and finished treatment for Ewings sarcoma in my right humerus 12 months ago, I had 14 rounds of extensive chemotherapy. Im in Australia and dont know anyone else who has had a Ewings. I had my humerus bone removed, I had radiation as well.

    Nina
  • leposierrasp367
    leposierrasp367 Member Posts: 4
    #27
    Wandajp said:

    Ewing sarcoma
    My husband finished 7 months of chemo in Sept 2011 and has his abdominal CT tomorrow, the first since he has been off of chemo for 3 months. He had the sarcoma on his left thigh. He has done great but was in the hospital 3x during treatment due to low counts and fevers. He is back to working 12 hrs a day and has more energy then I do!
    Hope you are doing well.

    Thanks for your reply.
    - bowel cancer symptoms and bumps on vagina
  • jazer313
    jazer313 Member Posts: 8
    #28
    bekki said:

    11 years on
    well done nemom4 on your fantasic news, of being cancer free..
    I was diagnosed with a pnet e/s in april 2000, it was in the duodenum, 9 (which is rare apparently) I had surgery to remove the fast growin tumour, and i to had the same chemo as you, and i can happily say i have been cancer free for nearly 11years now. i do have some after affects of the chemo. but nothin to serious thankfully.

    PNET or Ewings Sarcoma pnet?
    Hi,
    Glad you are cancer free.

    Our journey started just two weeks ago, my son (almost 14) had a headaches for about a month, when he did not respond do headache medications his doctor ordered a head CT scan for Tuesday morning, one hour after the CT scan we were asked to go to the ER, an MRI was ordered for his head and spin, the MRI confirmed he has a tumor on the upper right side of his brain, it was not inside the brain but on the surface of the brain, the next day he had a brain surgery and the tumor was removed, the Neurosurgeon called me and told me the results of the pathology report confirmed it is a PNET, yesterday the oncologist told us it is PNET Ewings Sarcoma! my son dos not have any pain in his body, the only thing he had was the headache, it is hard for me to go a head and agree with the oncologist assessment.

    What do you think.

    Thank you,
    Emad
  • jazer313
    jazer313 Member Posts: 8
    #29
    1mom said:

    My son just finished four weeks of radiation for desmoplastic small round cell tumor of the abdomen, which is in the ewings sarcoma family of tumors. His also had elements of PNET. He was diagnosed 6/00, and had chemo to shrink his very large tumor, and surgery to remove the bulk of what was left.(soft ball size then) Origionally it was 19x21cm I think, and had 3 liters of malignant ascites as well that the tumor was producing. After surgery he still had small seeding throughout his abdomen. He had 5 or 3 day chemo's to start with, using 5 or 6 kinds. Then he had high dose chemo W/ stem cell transplant as a rescue. As for the radiation, the treatments themselves are not bad, but radiation to the abdomen and pelvis is very difficult, with much gastritis.His blood counts have also suffered, and is still recieving platelets, blood and GCSF. Where is your tumor located? How did you find it? 1mom

    PNET or Ewings Sarcoma pnet?
    Hi,
    It has been so long since your post, I hope your son survived his cancer.

    Our journey started just two weeks ago, my son (almost 14) had a headaches for about a month, when he did not respond do headache medications his doctor ordered a head CT scan for Tuesday morning, one hour after the CT scan we were asked to go to the ER, an MRI was ordered for his head and spin, the MRI confirmed he has a tumor on the upper right side of his brain, it was not inside the brain but on the surface of the brain, the next day he had a brain surgery and the tumor was removed, the Neurosurgeon called me and told me the results of the pathology report confirmed it is a PNET, yesterday the oncologist told us it is PNET Ewings Sarcoma! my son dos not have any pain in his body, the only thing he had was the headache, it is hard for me to go a head and agree with the oncologist assessment.

    What do you think.

    Thank you,
    Emad
  • franm2655
    franm2655 Member Posts: 2
    #30
    myraf said:

    I had a ewing sarcoma and I did receive Adrymiacin. Luckily it was one of the first drugs I recevied but just wanted ti mention they still use that drug for treatment

    Adriamyacin
    Yes, they do still use this drug in Chemo. I have PNET in the thoracic spine and it was used as part of my regiment in Chemo. Anyone have any problems as a result of having this drug used? Thank you
  • maoberst
    maoberst Member Posts: 11
    #31
    danidewtwo said:

    HOPE
    Hi

    I am 6 months in remission from Ewing's Sarcoma in my left tibia. I was 21 years old when I was diagnosed. I have written a blog that may be helpful to your niece. Please check it out..http://danidewtwo.webs.com/

    Danidewtwo - how are you

    Danidewtwo - how are you doing?  My daughter finished Ewing Sarcoma treament in Sept 2012.  She is still not walking yet as her limb salvage surgery was significant.  I wish youy the best and would love to hear from you!  Would love to know how you are doing!

    Melissa

    www.caringbridge.org/visit/emilyoberst

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