CancerCompass message board discussion started by Priyank on 4/17/2008 http://www.cancercompass.com/message-board/message/all,23153,0.htm Sat, 06 Sep 2008 00:00:00 GMT Sat, 06 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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  Priyank Thu, 17 Apr 2008 00:00:00 GMT I'm a mother who lost their son to this disease after a  54month battle ...mostly Ryan fought hard and played evern harder ...live life to the full every minute of every day that you can ...be optomistic...be positive ...my son used to say he would never be depressed ...Y Y Y  be depressed and give myself another illness when I'm already fighting the bigest illness of my life. . he only gave in 36hrs before he left last June his philosphy ' Life is 1 big party'   & god could he party ...I feel for you and where you are ...but be positive ...mind over matter ..Ryan lived 2 years more than they said because is mind was so strong  &  he loved life so much ...there is only 1 survivor I know who visits here ...she writes on the Ewing Sarcoma's own page ...be brave live strong ...you can beat this if you put your mind to it  x   Alexis Thu, 17 Apr 2008 00:00:00 GMT My daughter is a Ewings Sarcoma Survivor of 2 yrs and 9 months now. She is going great and just had tests again (every three months) Hers was in her arm and she has had no problems since her 9 month treatment ended. Her tumor was in her arm with no known metastisis at all. They removed 9 inches of bone, and replaced it with cadavor bone, and she can do anything with her arm that she wants. Through treatment, we thanked God for his many blessings and for that day..Although we continue to pray eveyday for all that he has provided to us. We watched funny movies all the time and we kept very very positive. My daughter is now 20 years old and I believe her cancer is gone for good! Its not easy to go through treatment, but there is an end. The journey itself teaches you many things along the way, (many hidden blessings) I am so sorry for any parent who has lost a child to cancer, and being treated at Childrens Hospital in Denver, we did meet many of them. But God has a plan for all of us. I pray that my daughter has a long long life after her cancer! Stay positive and learn what you can. Knowledge is Power! Im here anytime you would like to talk.  Carol Momofsurvivor Thu, 01 May 2008 00:00:00 GMT Thanks for your reply, Carol. I have just returned from my second shot of chemotherapy today. Nausceatic feelings are fading me up every time, but yes your experience has poured hopes in my life. And also congratulation to your daughter.I will stop here because my finger tips are getting numb n numb.  Priyank Fri, 02 May 2008 00:00:00 GMT For Nausea, ask your Dr for Ativan. It helped my daughter alot, and she always ate! Thanks..Hang in there. It is tough but you can do this. Stay Positive and Watch Funny movies!!! Momofsurvivor Fri, 02 May 2008 00:00:00 GMT My wife was diagnosed with ewing sarcoma (soft tissue) by the end of may 2008. She's currently under chemiotherapy treatement (theso called VIDE combination) and doctors said she 's on the good way. We're from Romania (my english isn't very good but...well...that's not the worse problem right now)and we would be quite  happy if we keepin' touch with you (my wife also just finished the second chemio-session) alex79 Thu, 17 Jul 2008 00:00:00 GMT Alex, i would surely love to share my experience with you and your wife. i live in india , unmarried and my parents are taking care of mine now. i have been diagnosed Ewing's sarcoma on 30th march 2008. its now 3 months, i have totally taken 5 chemo by now and my tumor at pelvis (soft tissue) has reduced from 19 cm to 3 cm. In next week doctors are going to perform operation and  after operation there will be total 12 more chemo session. i go to hospital every 21 days for 2 days then again after 21 days for 5 days. they are using following agents: Ifosfamide,etoposide, vincristine, adriamycin, cyclophosphamide and actinomycin-D.i have lost all my hairs including my eyebrows.Anyway results are good and if you want to share any information then message me before this week. Because for next 15 days i might be in hospital for surgery and may not be able to contact. Wish you a happy and strong life.   Priyank Fri, 18 Jul 2008 00:00:00 GMT How was the surgical intervention? i hope you feel fine. Good luck from here! On the other hand, we're preparing for the third round of chemotherapy (3 days, then 21 days of pause and so on) alex79 Thu, 24 Jul 2008 00:00:00 GMT oh, i forgot to ask something...between the chemo sessions are you taking any pills (or  following a specific diet) for increasing the number of leukocytes/ white cells? alex79 Thu, 24 Jul 2008 00:00:00 GMT I was operated for Ewings on 24th july and i am still on bed, doctors have not allowed me to get up and walk. Luckily surgery was successful and also good biopsy results. Regarding your request for diet, i am allowed to eat only home made -coocked food. and in order to raise white blood cells -they give me G-CSF injection which normalize my WBC in just 7 days. i need to take those expensive injection daily with blood check at interval of 2 days. Priyank Sat, 09 Aug 2008 00:00:00 GMT Hello. How are you feeling? I am new to this site. I actually just found out today that my stepfather has been diagnosed with advanced lung cancer and we are not sure yet, but the doctors are pretty sure it has already spread to his liver and his bones. But that is not why I am writing you. I am 26 almost 27 and my best friend nicole was diagnosed with e.s. when she was 15. she went through her radition and chemo and before we knew it she was in remission. we went to prom and graduated high school. unfortunatly, the cancer came back a few months after we graduated. nicole choose to not seek out any treatment for she did not want to go through it all over again, to have it come back for a third time. (that i disagreed with, but it was her life) the cancer was near her spine and within a few months it had spread to her lungs. About a year and a half later, mind you, living her life to the fulliest. Doing all the things she wanted to, the cancer made her paralyzed so she was bed ridden until she passed away October 16, 2002, eight days after her 21st birthday. not a day that goes by do i not miss her. i even named my daugher after her. im not telling you this to upset you in any way...im telling you this because there is a difference between you and nicole...YOUR FIGHTING...and as long as you keep fighting.....YOU CAN BEAT IT!!!! You take over the cancer...dont let it take over you.....KICK ITS ASS!!!!!! You got it??? Keep fighting for yourself....And for my friend Nicole who I miss everyday...God Bless, Fight Strong.....and SMILE! xoxo sunflowergirl918 Fri, 22 Aug 2008 00:00:00 GMT I was DX Ewings left Maxilus sinus.  After three round sof initial chemo, it shrunk, and then I went for surgery.  I finished Radiation Therapy, and almost 1 year of Chemo this month (AUG).  If you have good margins and the tumor shrinks before surgery, your chances of a complete remission are almost total.  Keep on track witht the chemo, don't take breaks betweek cycles, eat well, stop smoking and drinking if you have to as well.   Good luck to you.   mikey0383 Sun, 24 Aug 2008 00:00:00 GMT Thank you so much for showing interest on my post. Well my father is a gynecologist and also well reputed in my city. i am thank ful to him that he has given me best treatment ever with most eligible and profound onco-physians and surgeons. Believe me with our great discipline and co-ordination among doctors , doctors have also amazed . At this time there is no evidence of any cancer cell in my body as per biopsy results. I always cry a lot when i take chemo but i manage it for only 2 days, rest for next 15 days and then again prepared myself for next chemo dose. my life funda is , i want to live 67 years,n  i will take all advantages of medical science by ignoring all side effects and focusing on my curative ness of disease. i am yet not allowed to walk since after surgery. surgeons have removed my left ilium- recovery is excellenct , i just need patience to stay in bed. And you are right, one need to be disciplined and strong to fight this disease. Priyank Wed, 27 Aug 2008 00:00:00 GMT