25 years Old boy with ES

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 

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

 

 

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

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.

 

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!!!

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)

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. 

 

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)

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?

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.