From alternative treatments to new research information, our online Ewings Sarcoma forum at CancerCompass.com offers helpful resources for cancer patients. http://www.cancercompass.com/message-board/cancers/sarcoma/ewings-sarcoma/1,0,119,65,66.htm Tue, 24 Nov 2009 00:00:00 GMT Tue, 24 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, My nephew is undergoing treatment for Erwins Sarcoma. He is 7 years old. He has undergone 9 cycles of chemotherapy and around 15 days of radiation treatment. recently he has undergone a flouride bone scan. The report said The impression was that "Scan negative for scintigraphically detectable skeletal metastages". it also had the findings that "L2 vertebra is photopenic". can someone provide some insight into the present state of my nephew. I will be thankful if someone can specifically describe what is the meaning of "L2 vertebra is Photopenic" I searched but couldnt find any info on the same. I now look forward to help from this medical community. Thanks in advance. Regards,Srini http://www.cancercompass.com/message-board/message/all,41538,0.htm srini1972 Sun, 15 Nov 2009 00:00:00 GMT My 28 y/o sister has been battling ES now going on 1.5 yrs...it started in her hip bone (3cm) and now progressing into her lung (golf ball sized)She is at MD Anderson and will begin her "clinical trial" this Friday....Just wondering if anyone out there has had good luck with these trials in this given instance??? http://www.cancercompass.com/message-board/message/all,40078,0.htm arod2009 Wed, 23 Sep 2009 00:00:00 GMT Normal 0 false false false EN-US X-NONE X-NONE MicrosoftInternetExplorer4 <w:L http://www.cancercompass.com/message-board/message/all,39604,0.htm Amory Sat, 05 Sep 2009 00:00:00 GMT My 2 yr old has ES/PNET. The surgeon took out a mass on his side that was encapsulated and self contained. The outer tissue was clean and all his tests came back clean too. He has no more evidence of this cancer anywhere in his body. The doctors told me that there is a 20-30% chance that he is cured and he doesn't have cancer anymore. However they are doing chemo on him anyway. He has to go through 14 treatments of aggressive chemo, and after only two treatments he has lost ALOT of weight and is very sick. Is this normal? Even with all their "medications" to help him he isn't bouncing back very well. I am scared that I might be putting him through this for nothing. Can someone give me a clue as to how this really plays out? http://www.cancercompass.com/message-board/message/all,38290,0.htm renshe Tue, 21 Jul 2009 00:00:00 GMT I was dx Ewing Sarcoma in March 2008, completed the entire treatement in Jan2009, doctors even operated me in july 2008, they removed my illium bone and found the excellent results. I am also hopeful that nothing goes wrong now.My only worry is , after they perfomed a surgery and removed my illium of left side, till now i have not been able to walk without a support-walker. My hip Joint is totaly secured. When i asked for how long it will take so as to walk without support, they only give the answer that" i may face slight problem in walking but even we also dont know when you will be able to walk."Any of you ever encountered such a problem or like to share some guidelines,, please REPLY. http://www.cancercompass.com/message-board/message/all,33121,0.htm Priyank Thu, 12 Feb 2009 00:00:00 GMT Hi!  I'm looking for information on adults with Ewings Sarcoma.  My 35 year old son has just been diagnosed with ES of the spine.  He has several tumors up and down his spine.  Thankfully the PET scan did not show anything anywhere else.  They started chemo yesterday and the tumors swelled when the chemo hit.  It caused him to be completely paralyzed from the chest down.  I am so scared.  Today he says he feels some twings here and there and is able to tell his right leg from his left if someone touches them.  I am hoping that this is a good sign.  He is at Sloan-Kettering and I am very impressed with the treatment he is receiving.  It is just happening so fast!  The doctors have told us that this cancer is very rare in adults and is agressive.  If you have any info, please reply. Thanks,Mom Windy http://www.cancercompass.com/message-board/message/all,31371,0.htm Mom_Windy Fri, 19 Dec 2008 00:00:00 GMT My partners son is 13 and in the last year has had all froms of treatment, the cancer has returned again after amputation of his leg and we were told that he could start a trial drug CP-751,871, but two days later they say "he is too young" and they MIGHT be able to try a different drug, but as yet nothing. at present he is in hospital because of the pain and I am very concerned that this cancer is eating him away and nobody seems to be doing anything. Can anyone help please. http://www.cancercompass.com/message-board/message/all,30910,0.htm Neutrino Thu, 04 Dec 2008 00:00:00 GMT Hello Readers, on 30th march2008 i was diagnosis ed and  found to be Ewing Sarcoma in Left Illiac- pelvis bone. I am going through this complete treatment now, i am finished with 2 shots of chemotherapy, side effects has started showing their nature , life is becoming more more pain ful.I just need emotional support and response from survivor who can assure me are there chances to re-appear same problem again? And what are the best precaution  i should take and what s the life next? Anyone who like to share some good experience of their beloved , please be welcome. Desperate guy. Priyank  http://www.cancercompass.com/message-board/message/all,23153,0.htm Priyank Thu, 17 Apr 2008 00:00:00 GMT I am a twenty year old male who is in treatment for Ewings sarcoma that affected my right forearm below my elbow.  Besides pre-surgery chemo and radiation, surgery (where 5' of bone was removed from radius) I have continued post surgery chemo and radiation as well.  I go to physical therapy so that I will have some use of my arm and hand.The surgery involved the remainder of my radius beng fused to the ulnar bone with three screws so I am unable to move my wrist, although I do have movement of fingers.  I am interested in talking with someone who's also had Ewings sarcoma in the forearm and similar surgery and treatment.  I have many questions regarding pain management, how long the protective mold is used, etc.Thankyou,novembertwenythree  http://www.cancercompass.com/message-board/message/all,22853,0.htm novembertwentythree Tue, 08 Apr 2008 00:00:00 GMT I am presently going through treatment of Ewings sarcoma that affected my  right forearm right below my elbow.  Besides chemo and radiation before surgery ( where 5" of bone was removed from my radius) I have continued with post surgery chemo and radiation as well.  I go to physical therapy so that I will have some use of my arm and hand.  The surgery involved the remainder of my radius being attached to the ulnar bone with three screws so I am unable to move my wrist, although I do have movement of fingers.  I am twenty years old and would be interested in talking with someone who has also had Ewings sarcoma in the forearm and similiar surgery.Thanks,Gabriel  http://www.cancercompass.com/message-board/message/all,22826,0.htm novembertwentythree Tue, 08 Apr 2008 00:00:00 GMT If you or a family member or friend has sarcoma, you might find the video presentation "A Forgotten Cancer" informative. It can be accessed on YouTube at http://tinyurl.com/3cv2du  http://www.cancercompass.com/message-board/message/all,21212,0.htm BruceS Fri, 22 Feb 2008 00:00:00 GMT HiMy 10 year old son now 11 was diagnosed with Ewings Sarcoma on the sacrum (bottom of spine) and overlapping onto the central nervous system. Because it is rare there is no data/info for this area so they throw the area "Sacrum" into the pelvic region data/info catergory....which does not have a good survival rate..Tyler went from having a ache in his leg to not being able to walk over a 8 week period. He was wheel chair bound and by the time it was finally diagnosed after seeing 8 seperate doctors and specialist they finally figured it out with a simple MRI.As you are all aware the disease is a lifestyle in itself a world different to what we know. Survival is a daily key word, decisions are life and death and impacting, the thought of simply doing the shopping is alien.Tyler's 50cent mass has significantly reduced and he is now walking and has completed 8 cycles and is nearly finished radiation. There is no more throwing up or accidents, depression or fatigue. Last week he started back at school for a couple of hours per day before radiation appointments... A day I thought I would never see 5 months ago.There are 4 other kids going through the same course he is with Ewings all four found themselves in the same room one week. It was helpful and somehow supportive knowing other children were surviving the same disease.But if I had to sum up my experience so far in seven words, I could only say "a gut wrenching rollercoaster ride from hell".My thoughts and loving energies go out to you all. And I am sorry you  have all been on the same ride and theme park.   http://www.cancercompass.com/message-board/message/all,20821,0.htm Nicolasayssomething Mon, 11 Feb 2008 00:00:00 GMT My friend's 4 month old son has just been dx with ES.  They found a tumor in his eye and did a MRI and found 12-14 more throughout his body.  Where can I find out more information about this type of cancer?  He has started chemo (how awful for such a young child, just like everyone else who has to endure cancer) and it has shrunk the tumor in his eye.  Does anyone have experience with this and such a young child?  I'd like to stay as positive as I can for my friend, but I'd like to get as much info as I can.  I am a regular on this site because my mom is battling lung cancer for over a year now.  Any info would be appreciated.  Thanks.Gretchen aka  Motherhen  http://www.cancercompass.com/message-board/message/all,19630,0.htm Motherhen Fri, 11 Jan 2008 00:00:00 GMT Hello.  I am hoping this is a "live" msg board.   My 22 year old son was recently (summer 2007) diagnosed with Ewing's and I have been searching for others to communication of their experiences and information.   If you're still out there, please contact me.   Thank you. http://www.cancercompass.com/message-board/message/all,18630,0.htm SylivaJean Tue, 04 Dec 2007 00:00:00 GMT My dear friend of 28 yrs has been recently diagnosed with Ewing's Sarcoma.  He is 34 yrs old and is at Stage 4.We live in NYC but he is currently down in San Antonio, TX at the South Texas Accelerated Research Therapeutics (START) facilities.  He was considered a candidate to receive the new AMG 479 anti-body. Has anyone received the AMG479?  Does anyone know anything about this?We hope and pray that this will be the answer we have so desperately been looking for.God Bless -always TOGETHER ~ sempre INSIEMEwww.ACCARDOSARCOMAFOUNDATION.com http://www.cancercompass.com/message-board/message/all,16955,0.htm ASFaware Wed, 10 Oct 2007 00:00:00 GMT My dear friend of 28 yrs has been recently diagnosed with Ewing's Sarcoma.  He is 34 yrs old and is at Stage 4.We live in NYC but he is currently down in San Antonio, TX at the South Texas Accelerated Research Therapeutics (START) facilities.  He was considered a candidate to receive the new AMG 479 anti-body. Has anyone received the AMG479?  Does anyone know anything about this?We hope and pray that this will be the answer we have so desperately been looking for.God Bless -always TOGETHER ~ sempre INSIEMEwww.ACCARDOSARCOMAFOUNDATION.com  http://www.cancercompass.com/message-board/message/all,16938,0.htm ASFaware Tue, 09 Oct 2007 00:00:00 GMT My dear friend of 28 yrs has been recently diagnosed with Ewing's Sarcoma.  He is 34 yrs old and is at Stage 4.We live in NYC but he is currently down in San Antonio, TX at the South Texas Accelerated Research Therapeutics (START) facilities.  He was considered a candidate to receive the new AMG 479 anti-body. Has anyone received the AMG479?  Does anyone know anything about this?We hope and pray that this will be the answer we have so desperately been looking for.God Bless -always TOGETHER ~ sempre INSIEMEwww.ACCARDOSARCOMAFOUNDATION.com  http://www.cancercompass.com/message-board/message/all,16936,0.htm ASFaware Tue, 09 Oct 2007 00:00:00 GMT My dear friend of 28 yrs has been recently diagnosed with Ewing's Sarcoma.  He is 34 yrs old and is at Stage 4.We live in NYC but he is currently down in San Antonio, TX at the South Texas Accelerated Research Therapeutics (START) facilities.  He was considered a candidate to receive the new AMG 479 anti-body. Has anyone received the AMG479?  Does anyone know anything about this?We hope and pray that this will be the answer we have so desperately been looking for.God Bless -always TOGETHER ~ sempre INSIEMEwww.ACCARDOSARCOMAFOUNDATION.com      http://www.cancercompass.com/message-board/message/all,16935,0.htm ASFaware Tue, 09 Oct 2007 00:00:00 GMT My dear friend of 28 yrs has been recently diagnosed with Ewing's Sarcoma.  He is 34 yrs old and is at Stage 4.We live in NYC but he is currently down in San Antonio, TX at the South Texas Accelerated Research Therapeutics (START) facilities.  He was considered a candidate to receive the new AMG 479 anti-body. Has anyone received the AMG479?  Does anyone know anything about this?We hope and pray that this will be the answer we have so desperately been looking for.God Bless -always TOGETHER ~ sempre INSIEMEwww.ACCARDOSARCOMAFOUNDATION.com      http://www.cancercompass.com/message-board/message/all,16934,0.htm ASFaware Tue, 09 Oct 2007 00:00:00 GMT Hi                                                                                                          my name is Rachel Marroquin 26 yrs old . I  have cancer sarcoma i been living with it for 4yr now . I wanted to ask if anyone out there with any kind cancer they have a nasty smell come off there body even when you take a shower you can still smell it and it's only you that can smell it from your body . when i hit in my three years i found that nasty smell  on me that will not go away,I guess it's body cells that are dien off on me so i guess ...  but if there is anyone that might be going around and around with that crazy smell like me i would like to really know about it so i dont think i am going nuts on my own .   Thanks   http://www.cancercompass.com/message-board/message/all,16421,0.htm one_day Sun, 23 Sep 2007 00:00:00 GMT Hi there, I am new to the message board. My daughter Erica is a Ewing's Survivor of almost 2 years now. I still struggle with all of the quarterly scans and would love to have someone to talk to that understands. We went through 9 months of chemo, bone replacement surgery (her right humerous bone) and all was done on June 15, 2005. She was originally diagnosed on Oct 1, 2004. At that time she was 16 and has now finished her 1st year of college. While I may not be going through heck right now, I did go through this for an entire year. How tiring but we all fought together. Prayer and Laughter go A VERY LONG WAY. Ill be happy to talk with anyone who needs some reassurnace.  Thanks and God Bless http://www.cancercompass.com/message-board/message/all,12456,0.htm Momofsurvivor Sun, 27 May 2007 00:00:00 GMT My 19 yr old son was diagnosed in Sept, 06  with ES,  with metastasis in the lungs,  He had back pain for about a month that went undiagnosed,  doc thought he was just a teenager looking for pain meds.... 3 hospitals later and 3 weeks straight in the hospital,  we got that gut wrenching news you never want to hear............. and so began our journey into the unknown,  it certainly becomes another world,  you find out who your friends are,  and you are scared shitless about what is coming in the future.I am sitting here tonite wondering if I am doing the right thing,  If I am being a good enuff mom,  am I making decisions that I will regret,  Do I want to see him suffer so much just to have him here longer.......... MY MIND is reeeling with all sorts of confusing thoughts,  I am sitting here typing while Rick is lying on the couch,  being pain free, only because he is in a morphine induced stupor............. on tuesday this week he was taken off the vicodin and morphine pills and put on a Fentanyl patch and Roxonol,   his pain isnt being controlled,  just short spurts here and there.Ricks tumor is located in the left hip bone,  and had broken through the bone and is growing in his pelvic area,  mostly on the left side,  it has several lobes  (multi-lobular),  they are wrapped around the nerve bundle at the base of his spine,  which causes him severe neuropathy in his left hip, leg and foot,  cant even put a sheet on his foot.  he has lost control of his bladder and bowel muscles,  he must use his abdominal muscles to go to the bathroom, and accidents happen often,  he cant tell most of the time if he has to go.  he has been through 6 rounds of chemo so far,  3 - 5 days each time,  every 3 weeks.  we were doctoring at Beaumont Hospital in Royal Oak Michigan,  that is until last tuesday when we had to fire the doctor,  they werent following the protocol,  there was too much miscommunication with his staff,  they sent him home on christmas day with a hole in his central line,  ( no surgeons because of christmas) gee good thing it wasnt an emergency or something,  this is just a short list of the problems we encountered while doctoring there,  Rick and I had finally had enough and decided to find another DR,  and this time closer to home,  ( we had to travel 3 hrs,  for treatments,)   We should be hearing about an appointment at Sparrow Hospital in Lansing Michigan,  either today or monday.  I just worry so much because this puts his treatment even further behind,  but I had to do something other than sit back and take thier abuse of the situation.  I am not one to turn the other cheek too many times........... New Year,  New Beginning,,,,,,,,,,,,,,,,,  we have visiting nurses in the home 2 times a week,  and next week they are going to send in someone to help me with his baths and such,  ( i am 5'4  and he is 6'3  I have a hard time helping him in and out of the shower,  he is so unsteady because he cant walk well because of the leg and foot pain.  I feel so alone,  as no one in our  area has ever heard of this kind of tumor and feel so lost as to what to do for him........  We got some of his mid treatment results back last week and the MRI shows that one side of the tumor has improved, while the one lobe on the right side has more than doubled in size........ not good news,  but explains why he is now showing symptoms of neuropothy on the right side and is in so much more pain................ Blessings and Good thoughts to all of you........ May you find peace of mind............... and well wishes to your familiesMari http://www.cancercompass.com/message-board/message/all,8792,0.htm Missmari Fri, 12 Jan 2007 00:00:00 GMT Hi to everyoneI've just been reading everyone's stories regarding their sons or daughter's  battle to fight ES. My heart goes out to each and everyone of you. My son (19) was just diagnosed with ES last week.I'm wondering if anyone has ever considered an alternative treatment to cancer other than conventional?? My son is scheduled to see a specialist in homepathics in Calgary Alberta for Dec 20. We are not new to this type of therapy. He is secheduled to begin a long, heavy treatment with chemo back home here for Jan 8. Reading your stories I have to say I'm glad he's made the decision to at least look into an alternative treatment that is non-invasive to the body. He does not want to live out of hospitals for the next 3 to ? years of his life and have his quality of life limited to chemo and being sick IF there is another option to consider. I worry every minute of every day if this might be a good thing but as he says If he doesn't look into he will always regret it. This treatment would be also be a very long process with alot of time and effort put into it but because it's non-evasive his quality of life would be so much better. It's scary either way and I support his decison 100%. After all it's his body that would have to endure any kind of treatment. I just thought I would write and tell you our story. If he decides to go ahead with the chemo I sure know the place for support. Your stories have touched me greatly and you are all in my prayers. http://www.cancercompass.com/message-board/message/all,8324,0.htm Bbutterfly Sat, 16 Dec 2006 00:00:00 GMT Several months ago, there was an individual that posted about a story he had seen on 60 minutes about Ewings Sarcoma and a Houston Physician. The person that posted was actually talking about his mother and mentioned this show as an aside to a point he was trying to make. There were several responses to him as several people felt he was not being fair to the medical community. I am simply trying to locate this post or who wrote it. I would appreciate if anyone knows what I am talking about if they could kindly respond. Thank you. http://www.cancercompass.com/message-board/message/all,6835,0.htm Farmer Mon, 11 Sep 2006 00:00:00 GMT I just found this web site. I would like to talk with other parents in hopes to find some kind of support groups. Ilost my dauhgter to ewings sarcoma in July of this year. I have the support of my family and fiends but i do not think they really understand the pain im in. I have so many unanswered questions. is there anyone out there for me to talk with that understands my pain? lost mom http://www.cancercompass.com/message-board/message/all,3681,0.htm Lost_Mom Wed, 07 Dec 2005 00:00:00 GMT