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I was just diagnosed with Ewings Sarcoma pnet Need some Answers PLEASE!

nikki1988
Posts: 6
Joined: Aug 2010

I just found out in july2010 that I would start my fight with Ewings sarcoma . I am 21 years old the mother of a beautiful 3year old girl named Aubrey. I had my right kidney taken out and im going for my 2end opion on August 5 2010 after that Im due to start my chemo and radtiton anyday.. Latley I have had loss of energy and Im very tired all the time I force myself to gt out of this house everyday but find myself here so much. I used to run everyday since all of this began I have not ran once. I was wondering if anyone had gone through this same thing and could please give me some advice. I want to do all those things I was doing just over two months ago but as tired as I am it so hard for me .So please if you have any information u can give me on this journey im about to embark on I would really appreacate it !

Thanks so much for looking and God Bless You all
Nicole Schipper

nemom4
Posts: 15
Joined: Mar 2010

I understand where you are coming from. I'm a 25 year old mother of 4 who just finished chemo and surgery for Ewing sarcoma. Mine was on the rib. If you want to talk. Please email me at m_ammon6@yahoo.com.

nikki1988
Posts: 6
Joined: Aug 2010

I actually just found out todat thats its all over my back bones and though out my body !kind of scarey considering i already had my kidney removed ! Bit I go for my second opinion tomrrow in boston at the dana fiber instute and am ready to being my fight and win! How are thing with you ?

Thanks for reading God bless you
Nicole

nikki1988
Posts: 6
Joined: Aug 2010

I was just wondering how things are going for you? Right now im am in the hospital for basiclyu 6 months and if i leave my doctor says i will die... im very sad for i can not see my little one my doc also says she carries to many germs so i listen to what ever this doctor says because he is the best I have... Please let me no how things r for u??? God Bless

Nicole

3TimeChamp's picture
3TimeChamp
Posts: 4
Joined: Aug 2010

Hey Nikki,

First off, that sucks about the cancer (I hope that wasn't too blunt, but that's what cancer buddies are for :-). On the other hand, congratulations on the baby girl!

Secondly, I know almost exactly what your going through. I played soccer my whole life, year after year, to the point where I planned on getting a soccer scholarship when I got into college. When I was fourteen (Nov 2003), that plan was pretty much ruined when I was diagnosed with Ewings sarcoma (and yet, I still only win $1 max on the scratch off cards). I went through chemo and radiation to my pelvic bone until June, when I was in remission. Less than a year later, my scans revealed a relaspe in my spine. Again I was off to more chemo and radiation. This time, my brother was tested, and proven a perfect match for a bone marrow transplant. I got that in Oct 2005, and when I finally got out of isolation I continued on my life by graduating high school, starting college, joining a sorority, and celebrating when I could finally put my hair in a ponytail again. This past Novemeber (2009), I got a CT scan, a PET scan, and finally a lung biopsy to reveal another relaspe. The cancer that had been dormant for 4 years emerged in my lungs. I was immediately put on a trial drug with zero side effects, and it worked to the point where I was able to get surgery. In April, I had lung surgery, and then I had an ablation in June to get rid of any remaining cancer. I just finished my "just-in-case" treatment of radiation last week, with only a slight case of fatigue.
Now, I am back to work, going on vacation in 2 weeks, and then spending a semester abroad in Rome, Italy to student teach at an international school. As much as I give credit to the medicine, I've got to say it was really my friends, family, and doctors that allowed me to keep my spirits up. To me, a close and supportive enviornment is the most important thing, and it sounds like your daughter is the best enviornment anyone could ask for.
The journey's going to suck, but the way I like to look at it is that there are two options: do it or don't do it. Since the only option is to pretty much do it, I always say to do it with a smile and a laugh.
If you have any questions, please feel free to e-mail me at jrwilson59@gmail.com Don't be shy to ask anything. Chances are, I've been through it before.

nikki1988
Posts: 6
Joined: Aug 2010

Quite a stroy and a postive one as much as you have been through you still keep goin! sounds like me through me a curve ball im still gunna fight to get that home run and have my daughter on the side lines smiling and cheering thanks so much . Like i said earlier i just founbd out it through out my body i start k=chemo in less then a week and start my journey / fight and I will b on here in years givin my story again thanks

God bless u and you family

Nicole

nina0767
Posts: 2
Joined: Oct 2012

My son was in remmision for a year and 5 months now.His been diagnosed for PNET EWING SARCOMA in his pelvis,He's only 10 yrs old when he was diagnosed.As for now he is doing well,he had 14 cycles of chemo and 6 weeks of radiation.
I'm new in this site,and really want to hear long term survivors story.
God bless you all.

danidewtwo
Posts: 2
Joined: Sep 2010

Hi nikki

I understand what you are going through with the diagnosis part of ewing's. I was 21 years old when i was diagnosised. I have a blog that you should check out, it chronicles the up and downs of my journey. http://danidewtwo.webs.com/

Also I went to an orthopedic oncologist in Detroit Michigan and would recommend him to any one...Dr. Micheal P. Mott at Henry Ford Hospital

Please feel free to e-mail me with questions or to just talk

danidewtwo@comcast.net

GOOD LUCK!! Danielle

wmaxwell5's picture
wmaxwell5
Posts: 1
Joined: Jan 2004

I was diagnosised with pnet when I was 22 I am 37 now. I went to John Hopkins. I live in Alabama and at that time I couldn't find a dr here that had ever treated pnet. I went through chemo and radiation for about a year but now I am healthy and have 3 kids. It's all worth it. Just think that you have the rest of your life ahead of you and this is just a bump on the way and it will make you different person. W

jazer313
Posts: 8
Joined: Oct 2012

Hi,
I'm happy that you are doing great and have a beautiful kids.

Our journey started just two weeks ago, my son (almost 14) had a headaches for about a month, when he did not respond do headache medications his doctor ordered a head CT scan for Tuesday morning, one hour after the CT scan we were asked to go to the ER, an MRI was ordered for his head and spin, the MRI confirmed he has a tumor on the upper right side of his brain, it was not inside the brain but on the surface of the brain, the next day he had a brain surgery and the tumor was removed, the Neurosurgeon called me and told me the results of the pathology report confirmed it is a PNET, yesterday the oncologist told us it is PNET Ewings Sarcoma! my son dos not have any pain in his body, the only thing he had was the headache, it is hard for me to go a head and agree with the oncologist assessment.

What do you think.

Thank you,
Emad

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