Stage 4 Ewings Sarcoma

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Stage 4 Ewings Sarcoma

by LeoGama on Mon Sep 09, 2013 01:37 PM

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I was diagnosed February 24th 2013 with a very aggressive cancer so I was told, I always felt short of breath and tired, I saw my doctors numerous times with complaints of chest pains, shortness of breath and even abdominal pain. I was always diagnosed with having acute Bronchitis and sent away. As time passed I seemed to feel sick to my stomach always gagging for no reason and even peeing out blood, I would return to the doctor several times after that with the same diagnosis acute Bronchitis! I would ask my doctors how can this be that I feel this sick and it's what you say it is?? They would send me away with some antibiotics and an inhaler. Well I never got any better. One day while I was at work I felt a sharp pain in my stomach that I could not bare, it felt like something had exploded in my stomach so I rushed myself to University Hospital, after many scans and checks I was told that I had four fist size tumors. One on my bladder, Liver, spleen & lung! I could not believe what I was hearing!! I had 2 biopsy done and found out that my tumors were cancerous and that I would have to start a chemotherapy regime of 16 intensive cycles! I was scared and didn't know what to expect, my doctor told me that I would have 6 months to live because of how huge my tumors were and were they were! I decided to start my chemotherapy and see how my cancer would react to them. So far I have undergone 10 tough cycles and my tumors have shrunk tremendously, my cancer in my lungs has disappeared! I have 6 more cycles to finish and I will see what happens next! I'm far from cancer free but just know that there is always a fight in everyone of us! God will be my protector and I leave my life in His hands!! Faith has gotten me this far!! This month I have surpassed my 6 month life expectancy!! Praise God!! If someone needs advice feel free to ask!!

RE: Stage 4 Ewings Sarcoma

by cb531 on Fri Sep 13, 2013 05:36 PM

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My mom was told 3-6 and she is still here one year later! Stay positive. My family is dealing with Lyposarcoma in my husbands left thigh. he was dx in 2009 and still here. Let us know how your progess is going. I will add you to my prayer list.

lots of hugs xo Cathy

RE: Stage 4 Ewings Sarcoma

by LeoGama on Sat Sep 14, 2013 01:24 PM

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On Sep 13, 2013 5:36 PM cb531 wrote:

My mom was told 3-6 and she is still here one year later! Stay positive. My family is dealing with Lyposarcoma in my husbands left thigh. he was dx in 2009 and still here. Let us know how your progess is going. I will add you to my prayer list.

lots of hugs xo Cathy

Thank you so much for your prayers!! God bless

RE: Stage 4 Ewings Sarcoma

by robdeboer on Thu Jun 12, 2014 04:14 PM

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Hi Leo

Hope that the fight is still going good! Glad to see that you put all your trust and hope in our faithful father! I to had a huge ewing sarcoma mass in my abdomen. After feeling ill and flu like for a couple of months I finally got myself checked out in October 2012 and had an ewing sarcoma mass 25cm across. Surgery wasnt an option so I started chemo in November 2012 had a bad reaction to it and spent over 5 months in the hospital. I dropped down to 96 pounds. Its a long story but in the end I am still here, back at work and feeling better then i ever have. I still have something there but they arent sure what it is. I have only my heavenly father to thank for giving me the health that I enjoy right now. 

http://updatesonrobdeboer.blogspot.ca/

RE: Stage 4 Ewings Sarcoma

by thegreatcyrus on Wed Jul 23, 2014 05:41 PM

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On Sep 09, 2013 1:37 PM LeoGama wrote:

I was diagnosed February 24th 2013 with a very aggressive cancer so I was told, I always felt short of breath and tired, I saw my doctors numerous times with complaints of chest pains, shortness of breath and even abdominal pain. I was always diagnosed with having acute Bronchitis and sent away. As time passed I seemed to feel sick to my stomach always gagging for no reason and even peeing out blood, I would return to the doctor several times after that with the same diagnosis acute Bronchitis! I would ask my doctors how can this be that I feel this sick and it's what you say it is?? They would send me away with some antibiotics and an inhaler. Well I never got any better. One day while I was at work I felt a sharp pain in my stomach that I could not bare, it felt like something had exploded in my stomach so I rushed myself to University Hospital, after many scans and checks I was told that I had four fist size tumors. One on my bladder, Liver, spleen & lung! I could not believe what I was hearing!! I had 2 biopsy done and found out that my tumors were cancerous and that I would have to start a chemotherapy regime of 16 intensive cycles! I was scared and didn't know what to expect, my doctor told me that I would have 6 months to live because of how huge my tumors were and were they were! I decided to start my chemotherapy and see how my cancer would react to them. So far I have undergone 10 tough cycles and my tumors have shrunk tremendously, my cancer in my lungs has disappeared! I have 6 more cycles to finish and I will see what happens next! I'm far from cancer free but just know that there is always a fight in everyone of us! God will be my protector and I leave my life in His hands!! Faith has gotten me this far!! This month I have surpassed my 6 month life expectancy!! Praise God!! If someone needs advice feel free to ask!!

hi. im so glad and i hope that you'll be healthy and happy in your whole life.

(im sorry if my english is not so good) my cousin had a liposarcuma cancer about 1*8 cms. he had a sugery one year ago, after that they start a chemotherapy and after that radiotherapy, but they couldnt stop its progress,the cancer spread in all of his body.the doctor told us one weekend ago that they cant do anything for him. he cant walk now and his feet are numb and swollen, we are affraid that he loose his hope because of that.

what the food regim did you have? what can we do for him? if you have any experience please share with us, thank you so much

RE: Stage 4 Ewings Sarcoma

by d-featEWSarcoma on Sun Aug 10, 2014 12:24 AM

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On Sep 09, 2013 1:37 PM LeoGama wrote:

I was diagnosed February 24th 2013 with a very aggressive cancer so I was told, I always felt short of breath and tired, I saw my doctors numerous times with complaints of chest pains, shortness of breath and even abdominal pain. I was always diagnosed with having acute Bronchitis and sent away. As time passed I seemed to feel sick to my stomach always gagging for no reason and even peeing out blood, I would return to the doctor several times after that with the same diagnosis acute Bronchitis! I would ask my doctors how can this be that I feel this sick and it's what you say it is?? They would send me away with some antibiotics and an inhaler. Well I never got any better. One day while I was at work I felt a sharp pain in my stomach that I could not bare, it felt like something had exploded in my stomach so I rushed myself to University Hospital, after many scans and checks I was told that I had four fist size tumors. One on my bladder, Liver, spleen & lung! I could not believe what I was hearing!! I had 2 biopsy done and found out that my tumors were cancerous and that I would have to start a chemotherapy regime of 16 intensive cycles! I was scared and didn't know what to expect, my doctor told me that I would have 6 months to live because of how huge my tumors were and were they were! I decided to start my chemotherapy and see how my cancer would react to them. So far I have undergone 10 tough cycles and my tumors have shrunk tremendously, my cancer in my lungs has disappeared! I have 6 more cycles to finish and I will see what happens next! I'm far from cancer free but just know that there is always a fight in everyone of us! God will be my protector and I leave my life in His hands!! Faith has gotten me this far!! This month I have surpassed my 6 month life expectancy!! Praise God!! If someone needs advice feel free to ask!!

So sorry to hear of your experience while trying to figure out what was going on with your body. So often, more than not, we know our bodies and what they are feeling better than any doctor does. I was diagnosed in 2003 with EWS and as I was purusing the different sites, just thought that I'd drop a line a say I hope that all is well. I noticed there hasn't been an update for awhile, but you never know what's going on. Thoughts are with you and all those battling some form of cancer.

RE: Stage 4 Ewings Sarcoma

by riza0325 on Fri Jul 17, 2015 05:17 AM

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On Sep 09, 2013 1:37 PM LeoGama wrote:

I was diagnosed February 24th 2013 with a very aggressive cancer so I was told, I always felt short of breath and tired, I saw my doctors numerous times with complaints of chest pains, shortness of breath and even abdominal pain. I was always diagnosed with having acute Bronchitis and sent away. As time passed I seemed to feel sick to my stomach always gagging for no reason and even peeing out blood, I would return to the doctor several times after that with the same diagnosis acute Bronchitis! I would ask my doctors how can this be that I feel this sick and it's what you say it is?? They would send me away with some antibiotics and an inhaler. Well I never got any better. One day while I was at work I felt a sharp pain in my stomach that I could not bare, it felt like something had exploded in my stomach so I rushed myself to University Hospital, after many scans and checks I was told that I had four fist size tumors. One on my bladder, Liver, spleen & lung! I could not believe what I was hearing!! I had 2 biopsy done and found out that my tumors were cancerous and that I would have to start a chemotherapy regime of 16 intensive cycles! I was scared and didn't know what to expect, my doctor told me that I would have 6 months to live because of how huge my tumors were and were they were! I decided to start my chemotherapy and see how my cancer would react to them. So far I have undergone 10 tough cycles and my tumors have shrunk tremendously, my cancer in my lungs has disappeared! I have 6 more cycles to finish and I will see what happens next! I'm far from cancer free but just know that there is always a fight in everyone of us! God will be my protector and I leave my life in His hands!! Faith has gotten me this far!! This month I have surpassed my 6 month life expectancy!! Praise God!! If someone needs advice feel free to ask!!
Hi!how are u doing now?your story is very inspiring coz my husband is suffering from ES too.he was diagnosed August last year and had 4sets of chemo which is VDC-IE and he also had heavy ion radiation twice.. At first we thought it was just a hernia coz everytime my husband visits hospital the doctors always says its just a backache and theres nothing to worry about though he always had MRIs and CTs and everything ,still the diagnosis was just a simple backache...until last year mid september my husbands backpain became intense and he cant tolerate the pain,he was brought to ht e hospital by an ambulance, and finally a very big tumor was seen..tumor was so big that it cant be done with operation, so we had chemo ASAP and heavy ion radiation after then..the pain subsided and we thought its cured but after just 10 days we had a call from doctor and told us that they found 2small lesion nearby the primary tumor and we need to have another radiation set soon as possible..while we are taking the radiation, and had another scans, small lesions were scattered everywhere, in his lungs,neck,lowerback and also suffering from difficulty of breathing...unfortunately, with that small lesions in his lungs, he cant breathe without the oxygen supply and doctors told us that he cant have his chemo because of his condition right now.first we have to wait until his breathing will come back to normal and to have his chemo ASAP... This time its like my faith is shaking and its having a really really big toll on me and its getting me crazy...im here in d hospital with my husband for now,and i cant do anything to ease his suffering.. If u have time to make reply that would be very appreciated and i hope youre doing well..

RE: Stage 4 Ewings Sarcoma

by riza0325 on Fri Jul 17, 2015 05:24 AM

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Hi!how are u doing now?your story is very inspiring coz my husband is suffering from ES too.he was diagnosed August last year and had 4sets of chemo which is VDC-IE and he also had heavy ion radiation twice.. At first we thought it was just a hernia coz everytime my husband visits hospital the doctors always says its just a backache and theres nothing to worry about though he always had MRIs and CTs and everything ,still the diagnosis was just a simple backache...until last year mid september my husbands backpain became intense and he cant tolerate the pain,he was brought to ht e hospital by an ambulance, and finally a very big tumor was seen..tumor was so big that it cant be done with operation, so we had chemo ASAP and heavy ion radiation after then..the pain subsided and we thought its cured but after just 10 days we had a call from doctor and told us that they found 2small lesion nearby the primary tumor and we need to have another radiation set soon as possible..while we are taking the radiation, and had another scans, small lesions were scattered everywhere, in his lungs,neck,lowerback and also suffering from difficulty of breathing...unfortunately, with that small lesions in his lungs, he cant breathe without the oxygen supply and doctors told us that he cant have his chemo because of his condition right now.first we have to wait until his breathing will come back to normal and to have his chemo ASAP... This time its like my faith is shaking and its having a really really big toll on me and its getting me crazy...im here in d hospital with my husband for now,and i cant do anything to ease his suffering.. If u have time to make reply that would be very appreciated and i hope youre doing well..

RE: Stage 4 Ewings Sarcoma

by cristinaealex on Thu Jan 24, 2019 05:20 PM

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On Jul 17, 2015 5:17 AM riza0325 wrote:

On Sep 09, 2013 1:37 PM LeoGama wrote:

I was diagnosed February 24th 2013 with a very aggressive cancer so I was told, I always felt short of breath and tired, I saw my doctors numerous times with complaints of chest pains, shortness of breath and even abdominal pain. I was always diagnosed with having acute Bronchitis and sent away. As time passed I seemed to feel sick to my stomach always gagging for no reason and even peeing out blood, I would return to the doctor several times after that with the same diagnosis acute Bronchitis! I would ask my doctors how can this be that I feel this sick and it's what you say it is?? They would send me away with some antibiotics and an inhaler. Well I never got any better. One day while I was at work I felt a sharp pain in my stomach that I could not bare, it felt like something had exploded in my stomach so I rushed myself to University Hospital, after many scans and checks I was told that I had four fist size tumors. One on my bladder, Liver, spleen & lung! I could not believe what I was hearing!! I had 2 biopsy done and found out that my tumors were cancerous and that I would have to start a chemotherapy regime of 16 intensive cycles! I was scared and didn't know what to expect, my doctor told me that I would have 6 months to live because of how huge my tumors were and were they were! I decided to start my chemotherapy and see how my cancer would react to them. So far I have undergone 10 tough cycles and my tumors have shrunk tremendously, my cancer in my lungs has disappeared! I have 6 more cycles to finish and I will see what happens next! I'm far from cancer free but just know that there is always a fight in everyone of us! God will be my protector and I leave my life in His hands!! Faith has gotten me this far!! This month I have surpassed my 6 month life expectancy!! Praise God!! If someone needs advice feel free to ask!!
Hi!how are u doing now?your story is very inspiring coz my husband is suffering from ES too.he "" target="_blank" rel="nofollow">http://too.he " target="_blank" rel="nofollow">too.he was diagnosed August last year and had 4sets of chemo which is VDC-IE and he also had heavy ion radiation twice.. At first we thought it was just a hernia coz everytime my husband visits hospital the doctors always says its just a backache and theres nothing to worry about though he always had MRIs and CTs and everything ,still the diagnosis was just a simple backache...until last year mid september my husbands backpain became intense and he cant tolerate the pain,he was brought to ht e hospital by an ambulance, and finally a very big tumor was seen..tumor was so big that it cant be done with operation, so we had chemo ASAP and heavy ion radiation after then..the pain subsided and we thought its cured but after just 10 days we had a call from doctor and told us that they found 2small lesion nearby the primary tumor and we need to have another radiation set soon as possible..while we are taking the radiation, and had another scans, small lesions were scattered everywhere, in his lungs,neck,lowerback and also suffering from difficulty of breathing...unfortunately, with that small lesions in his lungs, he cant breathe without the oxygen supply and doctors told us that he cant have his chemo because of his condition right now.first "" target="_blank" rel="nofollow">http://now.first " target="_blank" rel="nofollow">now.first we have to wait until his breathing will come back to normal and to have his chemo ASAP... This time its like my faith is shaking and its having a really really big toll on me and its getting me crazy...im here in d hospital with my husband for now,and i cant do anything to ease his suffering.. If u have time to make reply that would be very appreciated and i hope youre doing well..
Hi! Would like to know if someone can help me find help for my aunt, 57 years old, diagnosed with ES. She lives in another country, they don’t have a protocol to follow, since she is a rare case. If anyone could give me any kind of information that can help us, we appreciate the effort!!!!! Thanks!!!
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