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

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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.

Forum

Hello to All

Started by Joe in General. Last reply by jimK yesterday. 12 Replies

Hello all,I am glad to have found this group.  I will be turning 40 in October and was diagnosed in April of 2013 when I was 38.  I had Neck pain for quite a while and headaches many times a week for…Continue

Clinical Trial

Started by Kelly in General. Last reply by jimK yesterday. 1 Reply

Does anyone have experience with the clinical trial titled" A pilot study of Genetically Engineered NY-ES0-1 Specific ( c259) T cells in HLA-A2+patients with synovial sarcoma?Continue

Do alternative therapies work?

Started by HopeandFaith in General. Last reply by Elodie Espesset on Friday. 8 Replies

Hello all. So our first appt at MD Anderson in Houston is next week (Happy Thanksgiving!) I've been trying to read up on alternatives to the usual radiation and chemo treatments. Has anyone had good…Continue

Your experiences with pain?

Started by Katie in General. Last reply by Louise on Thursday. 8 Replies

I haven't formally introduced myself yet so here goes...My name is Katie, I'm from the UK, I'm 27 years old and a few weeks ago I was diagnosed. I have a deep tumour greater than 5cm (TNM staging -…Continue

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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.

Latest Activity


Moderator
jimK commented on jimK's blog post Has anyone been through the genetically modified T-Cell trial?
"Thanks Lynda! I look forward to to hearing from you as you always supply encouragement and support.…"
19 hours ago
Lynda commented on jimK's blog post Has anyone been through the genetically modified T-Cell trial?
"Hi Jim, I am so happy that you say the trial is working and there is a 62% shrinkage. Jaclyn was…"
yesterday

Moderator
jimK replied to Joe's discussion Hello to All
"Hi joe! I was diagnosed back in 1992. Glad to hear that you've been clear. Keep vigilant and…"
yesterday
Kelly and jimK are now friends
yesterday

Moderator
jimK replied to Kelly's discussion Clinical Trial
"Hi, I've been though this trial at NIH. I have a blog located…"
yesterday

Moderator
jimK commented on jimK's blog post Has anyone been through the genetically modified T-Cell trial?
"Hi Kelly! I worked with my oncologist in narrowing down the clinical trials I was interested in. He…"
yesterday

Moderator
jimK commented on jimK's blog post Has anyone been through the genetically modified T-Cell trial?
"Hi Kristin! The skin issues are not bad. I had IL2 sunburn, plus all the skin from my hands and…"
yesterday
Kelly commented on jimK's blog post Has anyone been through the genetically modified T-Cell trial?
"Looking into this for my boyfriend. Any advice, experience, general knowledge?"
yesterday

Top Content 

1 Howdy Y'all

Howdy Y'all

Posted by Mandie on November 8, 2014

2 Where do we start?

Where do we start?

Posted by HopeandFaith on October 28, 2014

3 Your experiences with pain?

Your experiences with pain?

Posted by Katie on November 19, 2014

4 Do alternative therapies work?

Do alternative therapies work?

Posted by HopeandFaith on November 20, 2014

5 Sarcoma spread to Pancreas

Sarcoma spread to Pancreas

Posted by Kelly on November 11, 2014

 
 
 

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Blog Posts

Combination fo Vorinostat and Ridaforolimus to Treat Synovial Sarcoma?

Posted by Elodie Espesset on November 20, 2014 at 10:08am 0 Comments

The following study suggests vorinostat could potentially improve efficiency of ridaforolimus:

http://www.ncbi.nlm.nih.gov/pubmed/25406429

I'd like to see a mouse study...

Intradermal ID-LV305 Clinical Trial

Posted by Elodie Espesset on November 19, 2014 at 9:25am 2 Comments

Another vaccine to target NY-ESO-1 but apparently this time there is no restrictions on HLA type:…

Continue

Aldoxorubicin Trial on Hold

Posted by Elodie Espesset on November 19, 2014 at 9:21am 0 Comments

Apparently due to the death of a patient, the company has to review its inclusion/exclusion criteria for recruiting patients:…

Continue

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