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Welcome! You're not alone.

If your family has been affected by Synovial Sarcoma, consider Synovial Sarcoma Survivors Network your second home.

NOW....GET STARTED:

1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
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Disclaimer

All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.

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Specific doctor or hospital names in a positive context are welcome.
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Learn More About Synovial Sarcoma

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About

 

Ben's Friends Member Survey

Thank you for taking time to participate in our survey.  We are so grateful that more than 1000 of you responded! We are now working on analyzing the data. We'll let you know of the survey results soon.

Ben's Friends Now a Non-Profit 501(c)(3) Organization

This enables all donations to be tax deductible (starting with any made from July 2013), makes us eligible for corporate donations and matching gifts, and gives us access to grants and foundations (dramatically widening our donor pool), and provides benefits reserved for nonprofits (such as Google Ads credits).
This status will help us realize our ultimate goal - to ensure everyone affected by a rare disease has a safe place to go (our communities!) to connect with someone like them.
Thank you, Members and Moderators, for hanging in there with us and never wavering as we went through this difficult process. Now the real work can begin!
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Learn how others cope and be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

WHAT IS SYNOVIAL SARCOMA?

Synovial sarcoma is a malignant tumor of the soft tissues, usually around joints.

Under the microscope the tumor resembles synovial tissue (the lining tissue of joints). Synovial tissue is found around the tendons (bands of fiber that connect muscle to bone), and can form bursa (fluid filled cushioning pouches or sacs found in spaces between tendons, ligaments and bones) found in the area of joints.

This condition tends to occur in adolescents and young adults and affects more males than females. The most common location of origin is the thigh near the knee, but synovial sarcoma can also occur near other joints, mainly in the arms and legs.

Despite its name, it seldom arises within a joint.

Welcome To SynovialSarcomaSurvivors.org

If you or a loved one is affected by Synovial Sarcoma, this site is for you. Here you will find support, information, and most importantly a place to connect!

What you can do on Synovial Sarcoma Survivors:

  • Share your story on "My Page" & personalize it to reflect you.
  • Upload pictures & videos easily.
  • Start a new discussion on "Forum" or contribute to existing discussions.
  • Welcome new members with a comment on their page.

* We only offer peer-to-peer support (patients, family and friends). Unless a person states otherwise, we are not doctors.

This site is brought to you by Ben's Friends Patient Communities.

Forum

Lung nodules

Started by Noggin in General. Last reply by Aperez 12 hours ago. 4 Replies

Will's resection took place in Jan 2013. A 10 cm circle, 4 cm deep, was removed from his left lower back, the right side had to be cut to close the left side, and his right leg was used as a donor…Continue

Alternative treatments

Started by Michael Stangel in General. Last reply by Elodie Espesset on Saturday. 15 Replies

My primary started growing again at the end of November and I started Votrient at that time. By early Feb everything had progressed substantially again so we switched to Doxil annd tried 2 rounds of…Continue

Clear scans but sore chest pain. Anyone going through similar case?

Started by BobbyB89 in General. Last reply by Noggin Apr 9. 4 Replies

I had my follow up 3 month scans and they showed NED. I'm not sure how I feel about this because I have a very sore chest pain that comes and goes. I told my doctor about it and he says not to worry.…Continue

Morab 004

Started by Andy in General. Last reply by Elodie Espesset Apr 9. 1 Reply

. I started chemo Weds April 2, with the trial drug. At noon I went in for the 4 hour treatment, then a 4 hour watch period to see if the Morab-004 caused a reaction. I started feeling crappy at 8…Continue

Tags: Morab

Latest Activity

Aperez replied to Noggin's discussion Lung nodules
"I have three small nodules that that we're keeping an eye on. Three disappeared with high dose…"
12 hours ago

Moderator
Elodie Espesset posted a blog post

Phase II Anti-NYESO-1 immunotherapy trial at NIH

For those who are looking for a trial right now, you should check whether you may be eligible for…See More
yesterday

Moderator
Elodie Espesset replied to Michael Stangel's discussion Alternative treatments
"Since you opted out of chemo, you may want to stay in contact with a palliative care team for when…"
Saturday

Moderator
Elodie Espesset replied to Noggin's discussion Lung nodules
"Sporanox is for fungal infections. It sounds like the doctors don't think the nodules are…"
Apr 10
Trish replied to Michael Stangel's discussion Alternative treatments
"Hi Johnboy Esq - the neoplas site is interesting.  Can you please share what two drugs they…"
Apr 9

Moderator
Elodie Espesset replied to Michael Stangel's discussion Alternative treatments
"The Sarcoma Foundation of America is inviting a famous surgeon for abdominal procedures at their…"
Apr 9

Moderator
Elodie Espesset left a comment for Katie T
"Happy Birthday Katie! I hope you got your well-deserved family vacation..."
Apr 9

Moderator
Elodie Espesset replied to Andy's discussion Morab 004
"Thanks for the update Andy. This is definitely a side effect worth noting... I hope you find a…"
Apr 9

Top Content 

Blog.BensFriends.org

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Best of Ben's Friends

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What is Best of Ben's Friends?

Best of Ben's Friends is a collection of inspirational or informative posts from across our family of patient communities. To nominate a post, discussion, photo, or video, email the link to info@bensfriends.org.

 

 
 
 

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Blog Posts

Phase II Anti-NYESO-1 immunotherapy trial at NIH

Posted by Elodie Espesset on April 15, 2014 at 12:34pm 1 Comment

For those who are looking for a trial right now, you should check whether you may be eligible for the following:

http://www.clinicaltrials.gov/ct2/show/NCT01967823

In…

Continue

March 2014 Community Newsletter

Posted by Ben Munoz on March 27, 2014 at 11:35am 0 Comments

Dear Synovial Sarcoma Survivors Family and Friends,

March 2014 is an exciting month for Ben’s Friends, as everything seems to fall into place! But before we share the good news, we invite you to participate in a brief survey on the…

Continue

Surgery

Posted by dreestrong on March 13, 2014 at 10:42am 6 Comments

Hello everyone, just wanted to give you all an update on Adrian he just went through surgery and everything went better than expected,  :) but as we all know even though the tumor is gone.. the anxiety stays, hoping it does not return. Staying…

Continue

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