ewing sarcoma in my 11 year old brother left shoulder blade

asimk11
asimk11 Member Posts: 2
edited April 2012 in Sarcoma #1
hello guys my 11 year old brother has been diagnosed with a localized ewing sarcoma in his left shoulder blade how do I describe it it all started back in december when he complained of on n off pain in which we took him to his primary physician who took xrays n didnt see anything just saying its inflamation and prescribed him medicine to take but however his pain came back later in which the doctor decided to refer him to an orthopedic before we even saw the ortho doctor we noticed a swelling n it was bluish upon the orthopedic doc seeing that he had my little bro admitted and there is when the horror begin with a series of testing from mri ct scan bone scan biopsy bone marrow biopsy ultra sound to even a pet scan which thank god showed negative for spreading to other parts he has started his 1st chemo as of yesterday and thank god so far he hasnt had serious side effects so far other then not wanting to eat and fatigue and also in the pet scan report it says his mass in 11 x 7 cm I want to know is that pretty big more like a size of an orange or the size of a baseball??? Also is there anyone on here whos had ES in the shoulder blade or anywhere else in the body??

Comments

  • s129781
    s129781 Member Posts: 3
    #2
    My Results were similiar, I am a current Ewing Sarcoma Patient at the Age of 21, Currently Awaiting Clinical trials and the First start of Chemotherapy is to come. I had pain in my right knee on and off and then it started to get worse. I first, went to the E.R. in Alaska about 7 Times for the same pain and the same problem, There was one day a day I had to wait for about 5 hours, and the Hospital didnt put my record up to be seen by a Medical Doctor at the Hospital and I was in Excrutiating Pain, But I got thru it with them so We're Good. The pain was very sharp, very deep, could not walk on it much, going to the ER or Hospitals often. The area of the Tumor was Red-hot, Swelling Occured, Wore Joint Cast to my Knee I now am in seattle for the treatments and just the start of my cancer treatment, 28 weeks of the treatment, Surgery & chemotherapy, until cancer is gone, and the Tumor to remove of. If anything Please Contact me by Email
  • s129781
    s129781 Member Posts: 3
    #3
    My Results were similiar, I am a current Ewing Sarcoma Patient at the Age of 21, Currently Awaiting Clinical trials and the First start of Chemotherapy is to come. I had pain in my right knee on and off and then it started to get worse. I first, went to the E.R. in Alaska about 7 Times for the same pain and the same problem, There was one day a day I had to wait for about 5 hours, and the Hospital didnt put my record up to be seen by a Medical Doctor at the Hospital and I was in Excrutiating Pain, But I got thru it with them so We're Good. The pain was very sharp, very deep, could not walk on it much, going to the ER or Hospitals often. The area of the Tumor was Red-hot, Swelling Occured, Wore Joint Cast to my Knee I now am in seattle for the treatments and just the start of my cancer treatment, 28 weeks of the treatment, Surgery & chemotherapy, until cancer is gone, and the Tumor to remove of. If anything Please Contact me by Email
  • asimk11
    asimk11 Member Posts: 2
    #4
    s129781 said:

    My Results were similiar, I am a current Ewing Sarcoma Patient at the Age of 21, Currently Awaiting Clinical trials and the First start of Chemotherapy is to come. I had pain in my right knee on and off and then it started to get worse. I first, went to the E.R. in Alaska about 7 Times for the same pain and the same problem, There was one day a day I had to wait for about 5 hours, and the Hospital didnt put my record up to be seen by a Medical Doctor at the Hospital and I was in Excrutiating Pain, But I got thru it with them so We're Good. The pain was very sharp, very deep, could not walk on it much, going to the ER or Hospitals often. The area of the Tumor was Red-hot, Swelling Occured, Wore Joint Cast to my Knee I now am in seattle for the treatments and just the start of my cancer treatment, 28 weeks of the treatment, Surgery & chemotherapy, until cancer is gone, and the Tumor to remove of. If anything Please Contact me by Email

    Im so sorry to hear that bro
    Im so sorry to hear that bro have they told you if ur ewing sarcoma is localized or if it has spread elsewhere, they are going to put my 11 year old bro with 6 cycles of chemo and then they are going to do radiation on him his treatment is being done right here near our home in Fort Lauderdale, Florida make sure you ask them as many question as u can think of which is what I have been doing with these pediatric oncologists and just have faith but so far as far as my 11 year old bro he had his 1 st chemo cycle for five days which so far no serious side effects other then jaw pain and not wanting to eat or drink anything and a sore throat but if anything you can comunicate with me through asim.24@hotmail.com
  • Chanteuz
    Chanteuz Member Posts: 6
    #5
    asimk11 said:

    Im so sorry to hear that bro
    Im so sorry to hear that bro have they told you if ur ewing sarcoma is localized or if it has spread elsewhere, they are going to put my 11 year old bro with 6 cycles of chemo and then they are going to do radiation on him his treatment is being done right here near our home in Fort Lauderdale, Florida make sure you ask them as many question as u can think of which is what I have been doing with these pediatric oncologists and just have faith but so far as far as my 11 year old bro he had his 1 st chemo cycle for five days which so far no serious side effects other then jaw pain and not wanting to eat or drink anything and a sore throat but if anything you can comunicate with me through asim.24@hotmail.com

    Ewings Sarcoma
    Hi! I'm 58 with the same disorder but it was found in a free floating tumor and that's rare but it's also rare that I have ES at age 58. I had surgery and now will have 6 cycles of chemo. Please let me know how your brother is doing... I'll post how I'm doing starting 8/13/12. I'm afraid of the chemo's side effects. What drugs are they using for your little bro?
  • hoss
    hoss Member Posts: 1
    #6
    ewings sarcoma

    my 6yr old grandson was diagnosed in Feb. with Ewings sarcoma of the left shoulder. as others have stated it started with pain in his shoulder, went to ER and then sent to Akron Children's Hospital in Akron. After biopsy we were told he had cancer. He finished his 12 weeks of chemo last week and will have his left shoulder blade and muscle surrounding it on Monday. He is a small boy to begin with but looks like a little old man--bald, weak legs from being in hospital bed and red rimmed eyes. He has experienced severe itching in his rectum, red-man's syndrome(where he turns reddish brown from antibiotics) and severe burning/itching of his hands, bottom of feet, armpits and groin area. it's like someone who was burnt very bad and has healing. he will then have 22 weeks of chemo after the surgery.   

  • sgochano215
    sgochano215 Member Posts: 1
    #7
    My 8yr old with Ewing's Sarcoma of the left shoulder blade.

    Hi I was reading through this and my son was diagnosed with Ewing's Sarcoma of the left scapula on August 18th. I was wondering how the outcomes were for everyone??

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