I have started this site to help those touched by Epithelioid Sarcoma. I've included the story of our daughter, Stephanie. She was originally diagnosed in...
2
Becky
mauibecka
Jan 11, 2008 5:45 pm
I just found this link on the Sarcoma Alliance page. THANK YOU THANK YOU! My mom is fighting this sarcoma and it is so hard to find info and people who...
3
cindy
cindy_dungan
Jan 12, 2008 2:33 am
my son was diagnosed oct 17 07 epitheliod sarcoma in his left thumb and pointer finger after amputation to the first joint on each they found one lymph node...
4
Kathy Zuber
kathy_lynn_z...
Jan 12, 2008 5:26 pm
I'm sorry to hear of your son's trials. I hope all goes well and you won't have to 'deal' much longer - just move on to watching him become a strapping young...
5
Kathy Zuber
kathy_lynn_z...
Jan 12, 2008 7:36 pm
Becky, I hope your mom is doing well with her battle with this horrid beast!! When was she diagnosed? Where was her tumor? If I can help in any way, if just...
6
Standord Dunkley
sdunkley9b
Jan 13, 2008 3:53 am
Hello.Thanks for your email. I too have epitheloid chondrosarcoma and it spreads very atypically. I feel for your son. I am 44 years old and it went to the...
7
Becky
mauibecka
Jan 13, 2008 6:07 pm
Kathy - thanks again for this support/message board. My mom's orig tumor was at the inside of her right knee/thigh. She had surgery on that 10 years ago, and...
8
cindy dungan
cindy_dungan
Jan 13, 2008 6:43 pm
THANKS FOR YOUR KIND WORDS , WHY ARE THEY HESITATING ON REMOVING THE LYMPH NODE ? IS IT IN A BAD SPOT ? I TRUELY BELIEVE WE MUST STAY POSITIVE AND SURROUND...
9
Andrew
andos1969
Jan 15, 2008 12:58 pm
Hi there guys, I was doing a search on the web and came across your group. My name is Andrew and I was diagnosed with Proximal type Epithelioid Sarcoma in...
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Kathy Zuber
kathy_lynn_z...
Jan 15, 2008 7:44 pm
It's great to hear such a positive outlook. I hope this treatment continues to be very successful!!! Have they done any clinical trial on this form of...
11
sdunkley9b
Jan 15, 2008 10:13 pm
http://www.curesarcoma.org/ Then click on top right hand side of the website...
12
Andrew
andos1969
Jan 15, 2008 11:16 pm
Hi Kathy, Dr Wang published a study just recently on the beneficial effects of SPDT used in conjunction with radio seed implants and localised chemo. I will...
13
lambli47
Jan 16, 2008 12:57 am
I was diagnosed in August of 2006. Mine was located in my groin. I went to the Hillman Cancer Institute in Pittsburgh. I had 3 surgeries after my initial one...
14
Kathy Zuber
kathy_lynn_z...
Jan 16, 2008 2:31 pm
My daughter's was in her groin also, back in 2000. She had 4 rounds of Chemo 24/7 for 5 days, a second surgery, and then 49 radiation treatments. ... went ......
15
Kathy Zuber
kathy_lynn_z...
Jan 16, 2008 2:37 pm
That sounds great!! I'm so glad for you!! PLEASE keep us updated with your progress. Have you ever shared this information on the Sarcoma Alliance Website?...
16
Tom Lamb
lambli47
Jan 16, 2008 11:21 pm
I am on the Sarcoma Alliance board. I am also a advocate. I will let you all know how my scan goes. Keep the Faith!...
17
ashleyjrm
Jan 29, 2008 3:16 pm
Hello Everyone, I am writing because a loved one in my family has had epithelioid sarcoma. I am currently at school as a radiologic technologist major. I am...
18
Kathy Zuber
kathy_lynn_z...
Jan 29, 2008 3:38 pm
You're welcome to use the information Stephanie and I have written about my daughter, Stephanie, if you want a personal perspective. I think there is a link...
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Becky
mauibecka
Jan 29, 2008 3:52 pm
My mom has ES. Originally in her leg 10 yrs ago, one recurrence at 5 years, several lung mets in her right lung last year and now a met in a lymph node in her...
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Kathy Zuber
kathy_lynn_z...
Jan 29, 2008 4:21 pm
Good luck to your mom with this treatment!! I'll say prayers for her!! ... 5 ... in ... know ... radiology ... the ... typical ... you ... this ... my ... ...
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Becky
mauibecka
Jan 29, 2008 4:42 pm
Thanks, Kathy! We are glad they are going to try this first rather than traditional surgery. If it doesn't get rid of it, she can still try surgery but...
22
chiogeek
Feb 5, 2008 7:28 pm
Hi everyone! I thought since everyone was sharing thier experiences with ES, i might was well introduce myself. My name is Christine and I'm a 21 year old...
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Kathy Zuber
kathy_lynn_z...
Feb 5, 2008 8:48 pm
Christine dear, I'm so sorry that you have to go thru this crap. Your life is just beginning. I completely understand your worry when you read about ES on the ...
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Becky
mauibecka
Feb 5, 2008 10:10 pm
I don't really have advice to give, but wanted to let you know that you will always find support here. when my mom first had her tumor in her leg, we were...
25
Tom Lamb
lambli47
Feb 6, 2008 12:46 am
It is good to hear that you are doing well. I was diagnosed in September of 2006 with E.S.. Mine was in my groin area. I went through 4 surgeries, 28 days of...
26
Andrew
andos1969
Feb 6, 2008 12:09 pm
Hi there peoples, I have just returned from Melbourne where I had PET and MRI scans yesterday to see whats happening with my tumor. My hope was that it hadn't...
27
Becky
mauibecka
Feb 6, 2008 2:24 pm
Great news - I am very happy for you and wish you continued health! ... it ... last ... tumor ... my ... in ... to ... having ... morning - ... results....
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Kathy Zuber
kathy_lynn_z...
Feb 6, 2008 2:42 pm
Becky, it's good to hear from you again. I do want to add that they are beginning to see that amputation is not always a guarantee. ... a ... this ... clear...
29
Kathy Zuber
kathy_lynn_z...
Feb 6, 2008 2:47 pm
ANDREW, THAT IS WONDERFUL!!! I'm soooooo happy for you. I just can't tell you how wonderful this is! Wouldn't it be great if this treatment is the...
30
Kathy Zuber
kathy_lynn_z...
Feb 6, 2008 2:50 pm
Tom, you will be in my thoughts and prayers on Friday!! ... through ... negative ... chemo ... and ... Lori....
