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Working not Wishing for the Cure

LMSarcoma Direct Research Foundation December 2013


CTOS, the Connective Tissue Oncology Society held its international scientific conference in New York City, October 30-November 1, 2013.  Sarcoma researchers and doctors from all over the world shared their latest discoveries.  This year there was more focus on uterine leiomyosarcoma and also the drug trabectedin (yondelis) by PharmMar.   
ctos photo 3

Dr. Hohenberger of Mannheim, Germany, showed a compelling video of a robotic hysterectomy and warned of the danger of disrupting cancer cells by morcellation.  Sarah Robinson, a Science Advisory Board Member for LMSarcoma Direct Research is putting together a panel of sarcoma experts to further present this issue to the gynocologists who conduct this type of surgery at the 2014 American Congress of Obstetricians and Gynecologists Conference.

PharmaMar, makers of trabetedin had numerous papers and poster presentations, as well as a special evening presentation.  New studies have combined adriamycin (doxarubicin) with trabectedin.  Data shows that trabectedin offers good progress free stability for leiomyosarcoma but did not improve overall survival.  Trabetedin is approved in many European countries, but can only be attained in the US in clinical trails.  

A poster presentation by Dr. Suzanne George and Dr. Matt van de Rijn, looked at the Relationship between the presence of TAMS (tumor associated macrophages) and response to trabectedin in patients with LMS.  They found that non-uterine LMS patients with high levels of TAMS were more likely to respond to trabectedin.
They concluded that TAMS may help identify the LMS patients most likely to benefit from trabectedin, if confirmed in a larger study.

You can read all the abstracts of the presentations on the CTOS 2013 Meeting website.

Of particular interest:
Session #4 Uterine Leiomyosarcomas pages 100-102;
Trabectedin studies pages 122, 126.


October 30th - November 1st
LMS Retreat 2014
San Francisco

*** Research Alert ***
Phase 3 trial of TH-302 + doxorubicin versus doxorubicin for first-line therapy of metastatic soft tissue sarcomas, is  very close to its recruitment goal of 620 patients.  Currently, 517 patients are enrolled at 97 sites.  Learn more here.

Meet the Thriver:  Alison Woodman

Surveillance, surveillance, surveillance!



Alison Woodman from Cambridge, Massachusetts knows how to stick to her guns!   She was diagnosed in 2001 with retroperitoneal LMS.  It was a struggle to get the diagnosis.  Alison went into the doctor's office at least three times over a period of two years, telling him that she could feel a lump on the right side of her abdomen. He examined her, but didn't seem interested and couldn't feel anything. Finally, since the lump didn't go away, she faked symptoms and told them she had intermittent fevers and nausea. They sent her for an ultrasound. A follow-up CT confirmed there was a tumor. It was taken out but with no margins.

After surgery, she had an aggressive surveillance plan at Dana Farber Cancer Institute. For the first two years, she had scans every three months. Then she graduated to six month scans for another three years.  After that, five years from diagnosis and no more tumors, the plan was annual scans.

Then at seventh year, her doctor wanted to stop all CT scans completely.  A reasonable suggestion for most cancers.  But Alison knew that LMS was not like most cancers.   So Alison refused.   She continued to have her annual CT scans.

After ten years, a few small spots in her lungs and a couple in her liver began to turn up on the scans.  The spots didn't cause concern until 2012, eleven years from her original diagnosis.  One grew significantly.  She had it surgically removed by VATS.   Due to Alison’s insistence on annual scans, the metastasis was caught early.  She’s back to getting CT scans every 6 months now.

What does Alison do to thrive despite LMS?  Alison replied, “Laugh as much as possible.  As often as possible. I'm bad at exercise, but try to eat healthy food and not get stressed out.  Otherwise, I think I've just been incredibly lucky.” 

If you'd like to share your long term thriver story, contact Sharon .

*** Research Alert ***

Dana Farber's Phase 2 study on Letrozole and ULMS published.  Letrozole met protocol-defined criteria as an agent with activity in patients with advanced ULMS. Patients with the longest progression-free survival rate were those whose tumors strongly and diffusely expressed ER and PR. 

Welcome Sarah Salem-Robinson to LMSdr's Scientific Advisory Board 

Sarahs PicSarah Salem-Robinson is a Stanford trained Physician Assistant with over 11 years of women's health issues specializing in OB/Gyn/Infertility with a pharmaco-psychiatric background.  With her prior career/background as a Stanford clinical laboratory hematology/oncology scientist, she also has a strong foundation in laboratory research. An ULMS survivor herself, she wishes to contribute her knowledge to better the LMS community with the goal of creating more LMS awareness , finding more effective treatments and a cure to this devastating disease. Sarah lives in Los Altos, California.

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Buy DVDs of the 2013 LMS Retreat Presentations

Video of 6 yr. old 
by father
Curtis Dadian

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Participate in the Paraffin Block Drive for Research

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LMSdr advocates for and funds LMS specific research.  We've been a  nonprofit 501 (c) (3) since 2006.  For details of our past grants go to

LMSarcoma Direct Research Foundation
Post Office Box 52697
Tulsa, Oklahoma 74152
tel.  1-866-912-2730
fax:  1-413-502-2241

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