Extraskeletal Ewing's Sarcoma/PNET

amfaile
amfaile Member Posts: 1
edited March 2014 in Sarcoma #1
I've been putting this off for too long, but I'm really getting curious about my cancer and how many people there are out there who have been through it. I was diagnosed with a PNET/Ewing's tumor around my right lung in August 2005, and I can't seem to find many people who have heard of it, let alone who have survived it. I do know that it is very treatable, since my tumor had nearly disappeared after only five cycles of chemo. but I still have a way to go.

If anyone knows anything, please help me out. Thanks!

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Hello,

    You may want to do a search of the CSN website to see if there are others who have had a similar experience. To do this, enter key words such as Ewings Sarcoma in the search bar at the top of this page. If you find someone you would like to contact, you can do so through the CSN internal email system

    I wish you the best in your treatment.

    Take care and be well,

    Dana
    CSN Dana
  • jcthomas
    jcthomas Member Posts: 15
    #3
    Any luck finding someone else with your type of cancer. Sarcoma's are a rare type of cancer to begin with and then when you start categorizing the type of sarcoma they become even more rare. I live in Maryland in the Baltimore metro area and we have a high cancer rate to begin with in this area and we have two very good cancer centers (U. of Md. and Johns Hopkins) so I have met others with sarcomas though we no longer keep in touch. Would like to hear how you are doing. Take care - John.
  • venkat123
    venkat123 Member Posts: 1
    #4
    How are you doing
    Hi... i was also taking treatment for Ewings Sarcoma. I have undergone 4 cycles of chemo and i am doing fine now. Though it looks like that some more treatment would be required.

    I just wanted to know how u r doing now. Thanks.
  • nemom4
    nemom4 Member Posts: 15 Member
    #5
    hi
    Hi. Hope you are all doing good!! I just finished treatments for Ewing sarcoma in June. It is very uncommon. My tumor was on the 9th rib on the right side. If you want to talk you can email me at m_ammon6@yahoo.com. take care.
  • zango
    zango Member Posts: 5
    #6
    extraskeletal ewing's sarcoma /PNET

    Funny that you were searching for extraskeletal ewing's sarcoma /PNET. diagnosed patient . there are very few of us in the WORLD diagonised by this cancer, I was diagnosed in 1998 cornell in NYC with a tumer on my left lung, I have survied 2 more cancers, T-Cell lymphoblastic lymphoma, and muco epidermoid carsonoma ,, I have been blessed my friend with life, that i cant thank enough the GODs every moment of my living life , MABU..Would love to hear from you [content removed by CSN adminstrator]

  • zango
    zango Member Posts: 5
    #7
    extraskeletal ewing's sarcoma /PNET

    Funny that you were searching for extraskeletal ewing's sarcoma /PNET. diagnosed patient . there are very few of us in the WORLD diagonised by this cancer, I was diagnosed in 1998 cornell in NYC with a tumer on my left lung, I have survied 2 more cancers, T-Cell lymphoblastic lymphoma, and muco epidermoid carsonoma ,, I have been blessed my friend with life, that i cant thank enough the GODs every moment of my living life , MABU..Would love to hear from you [content removed by CSN adminstrator]

  • zango
    zango Member Posts: 5
    #8
    extraskeletal ewing's sarcoma /PNET

    Funny that you were searching for extraskeletal ewing's sarcoma /PNET. diagnosed patient . there are very few of us in the WORLD diagonised by this cancer, I was diagnosed in 1998 cornell in NYC with a tumer on my left lung, I have survied 2 more cancers, T-Cell lymphoblastic lymphoma, and muco epidermoid carsonoma ,, I have been blessed my friend with life, that i cant thank enough the GODs every moment of my living life , MABU..Would love to hear from you [content removed by CSN adminstrator]

  • zango
    zango Member Posts: 5
    #9
    extraskeletal ewing's sarcoma /PNET

    Funny that you were searching for extraskeletal ewing's sarcoma /PNET. diagnosed patient . there are very few of us in the WORLD diagonised by this cancer, I was diagnosed in 1998 cornell in NYC with a tumer on my left lung, I have survied 2 more cancers, T-Cell lymphoblastic lymphoma, and muco epidermoid carsonoma ,, I have been blessed my friend with life, that i cant thank enough the GODs every moment of my living life , MABU..Would love to hear from you [content removed by CSN Adminstrator] 

  • seibold7
    seibold7 Member Posts: 1
    #10
    hi my name is chris when i

    hi my name is chris when i was 24 i was diagnose with extraskeletal ewings sacoma i live close to st louis and all the doctors in this area didnt know how to treat me because they had never had anybody with type of cancer luckly my family doctor called st  jude hospital  and at that time they had one patient with this cancer and even though the age cut off for st judes to tak is 23 they wanted me to use as a person they could test new drugs on because the survival rate for this type cancer was less than 1%.so in aug 1994 i went down to st judes to be treated for extraskeletal ewings sarcoma once down there i was told that i was the oldest person they had seen to be treaded for this type cancer they also told me they wanted to test new drugs on me and that if i agreed they could exspand my live up to 15 years and if i didnt do the treatments i would have a year to live as you can see i let them do what they wanted i had one full year of chemo done they work with the doctors in st louis so i could do my treatments and still go home it was very tuff the doctors in st louis kept telling me 'i have never giving this amount of drugs to a person before' i went 8 hours a day for five days then off two week for my counts to recover then back at it about half way into the chemo i did 30 days of radiation totaling 3600cgy. the radiation made me feel the worst. i still go back to st judes for check ups and they tell me that the survival rat for extraseletal ewings sarcoma is up over 99% now. if you have any question or comments let me know i would be happy to talk to you or anybody else out there

  • Sheep
    Sheep Member Posts: 1
    #11
    PNET

    I had been diagnosed of PNET inside pelvis in 2003, have been through 10 round of chemotherapy (6+4, two kinds) and radiotheray. Nobody believe i can live, i survived more than 10 years, and stopped checking more than 4 years ago. So never give up.  

  • zango
    zango Member Posts: 5
    #12
    Pnet

    Yes I was diagnosed,  with e,s,e, sarcoma PNET, and with , T cell lymphoblastic lymphoma,  and mucoepidermoid carsonoma, please contact me 

    [content removed by CSN adminstrator]

  • AmyLoo
    AmyLoo Member Posts: 1
    #13
    seibold7 said:

    hi my name is chris when i

    hi my name is chris when i was 24 i was diagnose with extraskeletal ewings sacoma i live close to st louis and all the doctors in this area didnt know how to treat me because they had never had anybody with type of cancer luckly my family doctor called st  jude hospital  and at that time they had one patient with this cancer and even though the age cut off for st judes to tak is 23 they wanted me to use as a person they could test new drugs on because the survival rate for this type cancer was less than 1%.so in aug 1994 i went down to st judes to be treated for extraskeletal ewings sarcoma once down there i was told that i was the oldest person they had seen to be treaded for this type cancer they also told me they wanted to test new drugs on me and that if i agreed they could exspand my live up to 15 years and if i didnt do the treatments i would have a year to live as you can see i let them do what they wanted i had one full year of chemo done they work with the doctors in st louis so i could do my treatments and still go home it was very tuff the doctors in st louis kept telling me 'i have never giving this amount of drugs to a person before' i went 8 hours a day for five days then off two week for my counts to recover then back at it about half way into the chemo i did 30 days of radiation totaling 3600cgy. the radiation made me feel the worst. i still go back to st judes for check ups and they tell me that the survival rat for extraseletal ewings sarcoma is up over 99% now. if you have any question or comments let me know i would be happy to talk to you or anybody else out there

    I had Ewings in my left femur

    I had Ewings in my left femur when I was 14. Back in 1997. It's interesting to read other survivor stories 

  • Mike92604
    Mike92604 Member Posts: 2
    #14
    PNET

    My wife was diagnosed with PNET Ewing Sarcoma last week and has had her first round of chemotherapy. No future treatment plan has been given because they are waiting to see her response from the first chemo.. She has been admitted at a UCLA cancer center.

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