Lung mass that is Ewing Sarcoma

[Andrea]

Hi all. My cousin's girlfriend, age 30, has been in the hospital with fevers and a lung mass. Turns out the lung tumor is Ewings Sarcoma, which is very rare.

Does anyone have experience with this? The hardest part is that she has no insurance, so we are worried that she won't get top notch treatment as she is not in a top notch cancer center right now.

I already suggested they call NIH and MD Anderson to inquire. Not sure if they take patients without insurance.

Thanks friends.

[Kasey]

Sorry to hear about your cousin's friend. I believe Bobby Kennedy's son was dx with this many years ago. Then a friend of mine had his 19 yo daughter dx as well. I've not heard it as a lung mass though ~ only involved with bone.

If accepted as a patient at NIH, all tx is at no charge. NIH is federally funded so there is no cost to patients. It is topnotch, as Joe can attest to as well as myself. Hopefully she can, at least, get seen there for their opinion.

Any update on you little guy? I've been keeping him on our prayer list.

Kasey

[CaroleHammett]

Ewing's sarcoma is a bone cancer. Hers has apparently metastasized to the liver (very common). The prognosis for metastasized Ewing's is not good; however, the younger and healthier the patient, the better the prognosis (they are better able to survive aggressive treatments).

My girlfriend's son (age 24) is currently battling it with concurrent radiation and chemo in such strong doses that it would have killed me (and most of us) right out of the box, but because he was strong and healthy at time of dx (his is also metastasized to lungs), he has been able to make a comeback after each treatment.

His job did not have insurance, but because he was immediately staged 4B and thus unable to work, he was eligible for medicaid immediately, which provides full coverage. He is being treated in Denver by Ewings' specialists despite being on Medicaid and so far the treatment program seems excellent and he's hanging in there. He has a very strong will in terms of fighting this and so despite the poor prognosis statstically, we all have high hopes (if it's kicked, it tends not to come back--unlike lung and many other cancers).

To learn more about this particular cancer, I recommend you go to the federal www.cancer.gov website and enter Ewing and Sarcoma as search words to learn more about it.

Hope this helps,

Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

[LindaLevine]

HI, IT IS MY SON'S GIRLFRIEND ANDREA IS TALKING ABOUT. DIAGNOSIS SAYS CANCER CELLS SUGGESTIVE OF PRIMITIVE NEUROECTODERMAL TUMOR (PNET) WITH NO EVIDENCE OF B CELL. HOWEVER, IT ALSO SAYS "or" T CELL LYMPHOMA, IMMUNO STAINS cd99. THEREFORE I'M NOT SURE IF SHE HAS PNET THEY WANT TO START A REGIMEN THERAPY OF CHEMO FOR 2 DAYS OFF 3 WEEKS AND THEN 6 DAYS IN HOSPITAL FOR A YEAR. ANY INPUT WOULD BE VERY WELCOME. THANK YOU. LINDA LEVINE

[Andrea]

Thanks everyone!!!

I saw the report and as Linda said it talks about Ewings and says something about Lymphoma. I don't like the word "suggestive" in the report; nor do I like where it says "clinical correlation suggested". To me that means they arenot 100% sure w hat they are doing.

She lives in Atlanta area.

Kasey--I told my cousin Linda about you and NIH last night, that is why NIH was my first thought. Jacob is still way off charts, but so far no definate reason, so we just keep checking him. Love ya!