My battle through Ewing Sarcoma

rose_hadds said:

ewings too
I am 2 mth post treatment for ewings. i am rare as i am 45. Mine was in my base skull soft tissue with mets to my lung. I had 4 rounds of chemo a lobe removed from my lung and 35 rad treatments to my head. My prognosis is actually good. Still scared but stll here. My first follow up scans aare in Aug. so I am a little nervous. Most Ewings are young so my age is a factor. I live each day and try to be positive. Good luck in your journey.

nikki1988 said:

I would love to here your story!
My name is Nikki Im 21 and just found out I haveewing sarcoma. I had my whole right kidney exstacted and am await my chemo. I also just found out today its spead through out my body in my lungs back shoulders ect.. I would like as much support and info I can get to make my battle less stress full and give me good ppl to talk 2! I am very postive about this fight I have a 3yr old little girl what more the reason to beat this ! she is my everything and thre is nothing i wouldnt do for her and my self!

Thanks so much Godbless u and your family
nicole

rahima said:

worried about the ewing sarcoma
my son of age 22 came across ewing sarcoma in kidney worried upset

Did anyone's Ewing sarcoma ever recur or came back within 5 weeks and three days of last chemo treatment?

3TimeChamp said:

Ewing's
I'm a 21 year old who has beaten the disease 3 times. I was first diagnosed when I was fourteen, relasped when I was fifteen, and relasped again when I was 20. After the many, many rounds of chemo, 14 weeks of radiation (6 weeks the first two times and just recently 2 more weeks), a bone marrow transplant, and a lot of surgeries (two most recent ones were the lung surgery in April and the ablation in June), I'm finally happy to announce I'm in remission and looking forward to June 26, 2015 when I can donate blood.

Best of luck on the film!!! If there's anything I can do let me know and I'll gladly help as much as I can.

So glad to hear your story, was wondering how you are doing currently, hopelully all is well!  I am concered for my daughter she is in her 3rd relapse also.  Little history.. Originally in  her left femur with mets in lung (but not diagnosed at the time with mets) 3 small nodules in her lung 1 in question.  Relapsed in the same lung nodules where in 9 months after treatment ended, partial lobectomy and  chemo.  2nd relapse other lung 15 months after end of treatment. More surgery, this time trial chemo for 1 year when low and behold it came back this time in both lungs, had a bilateral resection at Mass General in Boston by one of the top surgeons for this type surgery.  Then she developed a cough shortly after surgery and had to go back to Boston for biopsy which turned out to be a tumor below her trachea near the airway causing this cough.  Again her we are faced with a trial chemo, unknown of which way to turn. My question for you is what treatments did you receive and in what hospital were you treated.  We live in Connecticut and was treated at Yale for first 2 bouts was very unsatisfied with how Yale did things so went to New York.    

sven21 said:

Hey Nikki,
I'm Sven, 27
Hey Nikki,

I'm Sven, 27 years old and I already faught Ewing 2 times. The first time I had a tumor in my pelvis, (the left Illeum wing). I thaught i had beaten my tumor, but four years later they found 3 little tumors in my left lung, i faught again against this monster an i won again, i"m now 3,5 years without tumors, let's hope that it stays that way.

I wish you all the best and lots of strenght

Hi Sven! I would love to hear about your treatment plan. I was diagnosed when I was 26, no mets at diagnosis, but some spots showed up about 1 year after I finished treatment. We watched them for about a year and they suddenly started growing. When I was 30 I had one removed and am now in a clinical trial in Portland with a drug called Regorafenib. It doesn't treat the cancer as far as eliminating or reducing the size, it just "puts it on hold" or stops it from growing. So all of my mets are still there, but so far the pause is working, but there is no real idea on how long it'll put my cancer on hold. My doc says there are lots of options left for me to try, but I would like to hear about what helped you become a long term survivor. I'm a single mom of 3 kids (12, 9, & 7) so I've got to beat this thing!!