My battle through Ewing Sarcoma

XGreenLntrnX
XGreenLntrnX Member Posts: 1
edited March 2014 in Sarcoma #1
I'm new to the Cancer Survivor board and am a Ewing Sarcoma Fighter/Survivor. I have one month of chemo therapy to go and am hoping to dive into making a short film about my journey. I have recently started a blog and also have begun mentoring some of the newer Sarcoma peers I have met through my hospital and through chemo. I was hoping I can get on here and you guys would show your support for my blog and my short film. If anyone has any questions for me about cancer, ewings sarcoma, what I've dealt with so far or my short film feel free to ask me. I look forward to meeting anyone and everyone. And I wish you all the very best through the troubling times that may lie ahead.

Anthony

http://teejayryan.wordpress.com/
http://www.indiegogo.com/Beat-That
http://www.facebook.com/ABruno.TJRyan

Comments

  • Wendy King
    Wendy King Member Posts: 1
    Ewing's Sarcoma Survivor
    Hi, Anthony...

    I just signed up and found your post. I am four months out from my last treatment. I walked out of U.W. hospital January 17th. Just did a three month check and I am all clear.

    I found my lump last March and by May 6th I had a biopsy done. Started chemo about one year ago. Hell year. BUT, all is good. How are you doing??
  • daffodil74
    daffodil74 Member Posts: 1
    Ewing's Sarcoma
    I am a 19 year Ewing Sarcoma survivor. I found out I had cancer when I was 16 and was sent to St. Jude immediately for surgery and treatment. That's when they confirmed it was Ewings. I have not had any recurrences since then. Best wishes through the rest of your treatment.
  • rose_hadds
    rose_hadds Member Posts: 34
    ewings too
    I am 2 mth post treatment for ewings. i am rare as i am 45. Mine was in my base skull soft tissue with mets to my lung. I had 4 rounds of chemo a lobe removed from my lung and 35 rad treatments to my head. My prognosis is actually good. Still scared but stll here. My first follow up scans aare in Aug. so I am a little nervous. Most Ewings are young so my age is a factor. I live each day and try to be positive. Good luck in your journey.
  • 3TimeChamp
    3TimeChamp Member Posts: 4
    Ewing's
    I'm a 21 year old who has beaten the disease 3 times. I was first diagnosed when I was fourteen, relasped when I was fifteen, and relasped again when I was 20. After the many, many rounds of chemo, 14 weeks of radiation (6 weeks the first two times and just recently 2 more weeks), a bone marrow transplant, and a lot of surgeries (two most recent ones were the lung surgery in April and the ablation in June), I'm finally happy to announce I'm in remission and looking forward to June 26, 2015 when I can donate blood.

    Best of luck on the film!!! If there's anything I can do let me know and I'll gladly help as much as I can.
  • nikki1988
    nikki1988 Member Posts: 6
    I would love to here your story!
    My name is Nikki Im 21 and just found out I haveewing sarcoma. I had my whole right kidney exstacted and am await my chemo. I also just found out today its spead through out my body in my lungs back shoulders ect.. I would like as much support and info I can get to make my battle less stress full and give me good ppl to talk 2! I am very postive about this fight I have a 3yr old little girl what more the reason to beat this ! she is my everything and thre is nothing i wouldnt do for her and my self!

    Thanks so much Godbless u and your family
    nicole
  • love2hearts
    love2hearts Member Posts: 5

    ewings too
    I am 2 mth post treatment for ewings. i am rare as i am 45. Mine was in my base skull soft tissue with mets to my lung. I had 4 rounds of chemo a lobe removed from my lung and 35 rad treatments to my head. My prognosis is actually good. Still scared but stll here. My first follow up scans aare in Aug. so I am a little nervous. Most Ewings are young so my age is a factor. I live each day and try to be positive. Good luck in your journey.

    I have just been told I have Ewings Sacoma
    I have just been diagnosed with Ewings in my heel bone. They have me on crutches and I have been told I will be on crutches for months and will probably have to have my foot amputated. I am 55 so I guess that makes me rare also. I went in for a sore ankle and was not prepared for the results. I have a CT scan of my chest next week and my first appointment with the oncologist. I am scared and have no idea what to expect. I have no idea what my prognosis will be but I am praying it will be good. I just took an early retirement package so I could spend extra time with my 82 year old mother and travel with my husband. This has been such a shock. Any advice would be so appreciated. I am so glad my daughter found this site for support. I am trying to be positive.
    Thank you and God bless.
  • isleoferin
    isleoferin Member Posts: 1

    I have just been told I have Ewings Sacoma
    I have just been diagnosed with Ewings in my heel bone. They have me on crutches and I have been told I will be on crutches for months and will probably have to have my foot amputated. I am 55 so I guess that makes me rare also. I went in for a sore ankle and was not prepared for the results. I have a CT scan of my chest next week and my first appointment with the oncologist. I am scared and have no idea what to expect. I have no idea what my prognosis will be but I am praying it will be good. I just took an early retirement package so I could spend extra time with my 82 year old mother and travel with my husband. This has been such a shock. Any advice would be so appreciated. I am so glad my daughter found this site for support. I am trying to be positive.
    Thank you and God bless.

    My father has just been diagnosed
    My father has just been diagnosed with a soft tissue ewing's sarcoma in his thigh. He had the tumor removed already prior to the doctors' diagnosing it as a Ewings. He is a 71 year old irishman in relatively good health. He has met the oncologists who are providing information regarding chemo or radiation. There is so little information regarding these treatments in older adults. Would the side effects of the treatments be worse than going without. From your experience, would you proceed with treatment at 71. He was in pain before the surgery because the tumor was sitting on his sciatic nerve but since then (the surgery was on 12/23/10), he is moving freely with no meds/crutches/limp. He says he feels better than he has in a long time. His CT scan shows no cancer anywhere else.

    We are not sure what the right path is...any thoughts from personal experience is greatly appreciated!

    Thank you and I hope the angels are watching over you!
  • rahima
    rahima Member Posts: 1
    nikki1988 said:

    I would love to here your story!
    My name is Nikki Im 21 and just found out I haveewing sarcoma. I had my whole right kidney exstacted and am await my chemo. I also just found out today its spead through out my body in my lungs back shoulders ect.. I would like as much support and info I can get to make my battle less stress full and give me good ppl to talk 2! I am very postive about this fight I have a 3yr old little girl what more the reason to beat this ! she is my everything and thre is nothing i wouldnt do for her and my self!

    Thanks so much Godbless u and your family
    nicole

    worried about the ewing sarcoma
    my son of age 22 came across ewing sarcoma in kidney worried upset
  • sven21
    sven21 Member Posts: 1
    nikki1988 said:

    I would love to here your story!
    My name is Nikki Im 21 and just found out I haveewing sarcoma. I had my whole right kidney exstacted and am await my chemo. I also just found out today its spead through out my body in my lungs back shoulders ect.. I would like as much support and info I can get to make my battle less stress full and give me good ppl to talk 2! I am very postive about this fight I have a 3yr old little girl what more the reason to beat this ! she is my everything and thre is nothing i wouldnt do for her and my self!

    Thanks so much Godbless u and your family
    nicole

    Hey Nikki,
    I'm Sven, 27

    Hey Nikki,

    I'm Sven, 27 years old and I already faught Ewing 2 times. The first time I had a tumor in my pelvis, (the left Illeum wing). I thaught i had beaten my tumor, but four years later they found 3 little tumors in my left lung, i faught again against this monster an i won again, i"m now 3,5 years without tumors, let's hope that it stays that way.

    I wish you all the best and lots of strenght
  • vanessarodgers
    vanessarodgers Member Posts: 1
    rahima said:

    worried about the ewing sarcoma
    my son of age 22 came across ewing sarcoma in kidney worried upset

    hope all is well
    My son, 14, was also diagnosed with renal ewings sarcoma. we are currently at md anderson in houston tx.
  • maoberst
    maoberst Member Posts: 11
    sven21 said:

    Hey Nikki,
    I'm Sven, 27

    Hey Nikki,

    I'm Sven, 27 years old and I already faught Ewing 2 times. The first time I had a tumor in my pelvis, (the left Illeum wing). I thaught i had beaten my tumor, but four years later they found 3 little tumors in my left lung, i faught again against this monster an i won again, i"m now 3,5 years without tumors, let's hope that it stays that way.

    I wish you all the best and lots of strenght

    Hi Sven,
     
    What treatment did

    Hi Sven,

     

    What treatment did you have to get rid of the tumors in your lungs?  In case we are faced with that dilemma, I want to be prepared to understand survivor stories!

     

    Thanks, Melissa

  • Sonny1221
    Sonny1221 Member Posts: 5
    Did anyone's Ewing sarcoma

    Did anyone's Ewing sarcoma ever recur or came back within 5 weeks and three days of last chemo treatment?

  • maoberst
    maoberst Member Posts: 11
    Sonny1221 said:

    Did anyone's Ewing sarcoma

    Did anyone's Ewing sarcoma ever recur or came back within 5 weeks and three days of last chemo treatment?

    Do you suspect you recurred? 

    Do you suspect you recurred?  Yes, I have heard of a recurrence that comes back quickly.  Where was your Ewing's located?

  • esdiagnoses2009
    esdiagnoses2009 Member Posts: 2

    Ewing's
    I'm a 21 year old who has beaten the disease 3 times. I was first diagnosed when I was fourteen, relasped when I was fifteen, and relasped again when I was 20. After the many, many rounds of chemo, 14 weeks of radiation (6 weeks the first two times and just recently 2 more weeks), a bone marrow transplant, and a lot of surgeries (two most recent ones were the lung surgery in April and the ablation in June), I'm finally happy to announce I'm in remission and looking forward to June 26, 2015 when I can donate blood.

    Best of luck on the film!!! If there's anything I can do let me know and I'll gladly help as much as I can.

    EWINGS RELAPSE

    So glad to hear your story, was wondering how you are doing currently, hopelully all is well!  I am concered for my daughter she is in her 3rd relapse also.  Little history.. Originally in  her left femur with mets in lung (but not diagnosed at the time with mets) 3 small nodules in her lung 1 in question.  Relapsed in the same lung nodules where in 9 months after treatment ended, partial lobectomy and  chemo.  2nd relapse other lung 15 months after end of treatment. More surgery, this time trial chemo for 1 year when low and behold it came back this time in both lungs, had a bilateral resection at Mass General in Boston by one of the top surgeons for this type surgery.  Then she developed a cough shortly after surgery and had to go back to Boston for biopsy which turned out to be a tumor below her trachea near the airway causing this cough.  Again her we are faced with a trial chemo, unknown of which way to turn. My question for you is what treatments did you receive and in what hospital were you treated.  We live in Connecticut and was treated at Yale for first 2 bouts was very unsatisfied with how Yale did things so went to New York.    

  • esdiagnoses2009
    esdiagnoses2009 Member Posts: 2
    sven21 said:

    Hey Nikki,
    I'm Sven, 27

    Hey Nikki,

    I'm Sven, 27 years old and I already faught Ewing 2 times. The first time I had a tumor in my pelvis, (the left Illeum wing). I thaught i had beaten my tumor, but four years later they found 3 little tumors in my left lung, i faught again against this monster an i won again, i"m now 3,5 years without tumors, let's hope that it stays that way.

    I wish you all the best and lots of strenght

    worried mom Ewings Relapse

    Hi Sven glad to hear you have beatent his beast 2 x and I am looking for all the help I can get with my daughter who also has been battling this for 5 years now on and off.  Where were you treated and what was your protocols each time you relapsed.  Hope you're still in remission and living your life.

  • Chrrose99
    Chrrose99 Member Posts: 1
    sven21 said:

    Hey Nikki,
    I'm Sven, 27

    Hey Nikki,

    I'm Sven, 27 years old and I already faught Ewing 2 times. The first time I had a tumor in my pelvis, (the left Illeum wing). I thaught i had beaten my tumor, but four years later they found 3 little tumors in my left lung, i faught again against this monster an i won again, i"m now 3,5 years without tumors, let's hope that it stays that way.

    I wish you all the best and lots of strenght

    Mets for me

    Hi Sven! I would love to hear about your treatment plan. I was diagnosed when I was 26, no mets at diagnosis, but some spots showed up about 1 year after I finished treatment. We watched them for about a year and they suddenly started growing. When I was 30 I had one removed and am now in a clinical trial in Portland with a drug called Regorafenib. It doesn't treat the cancer as far as eliminating or reducing the size, it just "puts it on hold" or stops it from growing. So all of my mets are still there, but so far the pause is working, but there is no real idea on how long it'll put my cancer on hold. My doc says there are lots of options left for me to try, but I would like to hear about what helped you become a long term survivor. I'm a single mom of 3 kids (12, 9, & 7) so I've got to beat this thing!!