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Wishing Working for the Cure
LMSarcoma Direct Research Foundation
           LMSeAlerts - May 2017



Save the Date!

(means to give life, heal, cure)

LMSdr RETREAT in Maui, Hawaii
Join us for a day in Wailea of healing workshops & dinner with sarcoma experts. Group activities for the rest of the week will be available too!
November 9th
Details to come soon

Recruiting Soon...

Phase I Olaratumab with Keytruda 
Call 877-285-4559 for more information

SLAMF7 Helps Immunotherapy

Why do some people respond to immunotherapy but not others?  Cancers that express SLMAF7 must be present for immunotherapy drugs to work. 

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2016 NCCN Guidelines for ULMS Recommends AIs

LMSdr strongly recommends that all ULMS patients have their original tumor tested for estrogen and progesterone receptors (Er/Pr.) If positive, then you are a candidate to try aromatase inhibitors (AIs) to help stop or slow estrogen driven tumors. Several ULMS patients have even had tumor reduction with an AI alone.  

If your doctor resists testing your tumor, give them the NCCN guidelines for Uterine Sarcomas on page 33. These guidelines are what doctors refer to as the standard of care.

CRI's Immunotherapy Trial Finder
CRI offers free services to help you find the right immunotherapy clinical trial for you. 

or phone and speak to a trial navigator to search for you. Call toll-free 1-855-216-0127, M-F 8:30am to 6:00pm Eastern Time. Se habla espanol!  

NCI's Cancer Vaccine Primer

NCI 4Want to understand how cancer vaccine work? The National Cancer Institute's website has the tutorial for patients and loved ones. 


PHASE II Axitinib and Pembrolizumab

According to the trial's protocol

LMS patients can enroll if you have tried anthraccycline chemos - such as doxorubicin - and it failed, or, you refuse to try anything else.


See Video

This trial is only offered at the Unv. of Miami. Contact: Breelyn Wilky, MD tel. 305-243-1287

Now Recruiting...  MSKCC_transparent2

T-Vec and Keytruda Immunotherapy

T-VEC is an immunotherapy called an “oncolytic.” It is injected directly into tumors in the skin, where it reproduces inside cancer cells and causes the cells to rupture and die. In some patients, this stimulates the immune system to fight the cancer throughout the body.

Pembrolizumab (Keytruda) is a form of immunotherapy. It works by blocking a molecule called PD-1 that shuts down the immune response. Blocking PD-1 can allow the immune system to detect and attack cancer cells. Pembrolizumab is already approved to treat melanoma and non-small cell lung cancer; its use in this study is considered investigational.   Details

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An experimental drug based on a molecule in the bacterial cell wall can stimulate an immune response in advanced tumors, a Fred Hutch-led research team found in a small, early phase study in patients with metastatic soft-tissue sarcomas. After injecting the drug (called G100) into tumors just underneath the skin, Dr. Seth Pollack, an assistant member in the Hutch's clinical research division, and his colleagues observed signs of heightened immune activity in the treated tumors. G100 is used as an immune stimulator in experimental anti-cancer vaccines, and similar compounds are part of FDA-approved vaccines for HPV and hepatitis B. The growth of the treated tumors was controlled after injection in 14 of 15 participants, and one participant's injected tumor completely regressed. The researchers are now designing a new trial that would combine G100 injections with a systemic immunotherapy, with the aim of stimulating an anti-cancer response throughout the body. 

New Anti-CD47 Clinical Trial of ALX148 

ALX148 is a fusion protein that comprises an 
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engineered high affinity CD47 binding domain of SIRPα linked to an inactive Fc region of human immunoglobulin. ALX148 potently and selectively binds CD47, blocking its interaction with SIRPα, thereby inhibiting a key immune checkpoint mechanism exploited by cancer cells. In preclinical studies, ALX148 has demonstrated significant inhibition of tumor growth in combination with targeted anti-cancer antibodies and checkpoint inhibitors with no adverse effect on CD47-expressing normal blood cells.  Phase I Trial Info

 Uterine Sarcomas: Latest Approaches

Want to know the most recent conclusions on surgery, adjuvant treatments and hormonal blockers? 

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2 Interventional Radiology Trials for Metastatic Sarcomas

Cryoablation, Radiofrequency Ablation, Microwave, Stereotactic Body Radiation Therapy (SBRT) and Adaptive Radiation Therapy (ART) for lung tumors.


Trillium's Anti-CD47 Phase I Trial

Open to sarcoma patients, Trillium is now recruiting 54 participants for their new phase I trial of TTI-621. This drug acts by binding human CD47 and preventing it from delivering an inhibitory "do not eat" (antiphagocytic) signal to macrophages. Macrophages drive tumor growth in LMS


GDC-0575 Combined with Gemcitabine

Phase I results report that the first two LMS patients treated with GDC-0575 combined with gemcitabine, lead to unusually long-lasting periods without the disease progressing. The first patient who had with extensive metastases in the peritoneum had a partial response, in which the tumor shrank, that lasted for one year. The second patient, who had lung metastases, had a complete response, in which the cancer completely disappeared, that is still ongoing nine months after the start of treatment.  Read more 

Rodney's Run 2

Larissa Williamson and Anthony Norman raised $1,525 for LMS research in memory of Larissa's husband Rodney. Thank you for helping us find a cure!  Here are ways you can help too!

Nivolumab (Opdivo) is Not Effective opdivo 2for ULMS. 
Just announced from the phase II immunotherapy trial.
The objective response rate was 0% of all 12 ULMS patients enrolled.  Read more

Interim phase 2 results for Keytruda

11/13/16.  Sarcoma Alliance Research 

Collaborative (SARC) presented the interim data on their phase II study of Keytruda (pembrolizumab) with sarcoma patients, at the Connected Tissue Oncology Society (CTOS) conference. 

In this study there were 10 LMS patients. Of those, 6 (60%) had stable disease and 4 experienced disease progression.

Maximizing Therapeutic Response in Leiomyosarcoma

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Thanks to Bruce Shriver, here is the power point presentation from CTOS  on the international, 1 million dollar collaborative study on LMS. While most of us can't understand the slides, it gives you the depth and scope of this comprehensive research project! For more understanding, watch Dr. Jonathon Fletcher explain the research project HERE.  LMSdr gave $125,000 towards this study in collaboration with the researchers,  NLMSF and the Liddy Shriver Initiative.

From Italy - FIBROMUN (L19-TNF) 

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Fibromun (L19-TNF) is a fully-human immunostimulatory product, currently being tested in Italy in a phase II trial with soft tissue sarcoma, combined with doxorubicin. It consists of the anti-EDB human , L19, fused to human TNF, a strong pro-inflammatory cytokine.  A phase III trial in soft tissue sarcoma is also in preparation.

Regorafenib Phase II Results 

Another potential new drug for LMS! 56 LMS patients were in this international (France, Austria and Germany) phase II trial. 

The median progression free survival for the LMS patients was 5.6 months with regorafenib vs 1.0 months with placebo. This study is ongoing but not currently recruiting new patients. READ MORE

New Immunotherapy Trial 

MDAnderson_logoMD Anderson Cancer Center announced its new phase II trial: Immunotherapeutic Agents in Multiple Sarcoma Subtypes.  This trial will combine two monoclonal antibodies:  Durvalumab and Tremelimumab. Enrollment is limited to 150 different types of sarcomas. Contact Somaiah at tel. 713-792-3626. 

May 7th - Long Island
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10K run to benefit LMSdr in honor of 
Michele Lunde

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NY, NY Meeting for LMS Families!
Sunday June 25th
RSVP Janine for address

Many of our LMS parents recommend....

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Kesem is a FREE nationwide  summer camp that supports children through and beyond their parent’s cancer. They are the largest national organization dedicated to this unique population – supporting children with innovative, fun-filled programs that foster a lasting community.  

National Conference on Work and Cancer

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June 23rd, 2017   
 CUNY Graduate Center, NYC

Registration & Travel Scholarship Applications for the National Conference on Work & Cancer 


2016 LMSdr Conference Video

If you attended the LMSdr Conference in 13007249_10156849504300650_2605427802358393964_nNew Jersey/NY in April, videos of the presenters are now available!  Email Sharon to get your VIP code to view the videos HERE.

For those who did not attend, if you make a donation toward LMS research HERE you will receive the videos as our thank you gift!

(Drs. D'Angelo, Tap and Hensley at LMSdr Conference. Photo by Tom Zapcic Photography)


Sliders_0215_ASH_425x250_r1-PMIn 2016, the American Society of Clinical Oncology (ASCO) launched its first clinical trial. The Targeted Agent and Profiling Utilization Registry (TAPUR) Study is designed to help doctors learn more about targeted drugs in people with later-stage cancer. 

PODCAST   Learn more basics on TAPUR HERE


NCI - Molecular Analysis for Therapy Choice (MATCH) is similar to the ASCO TAPUR Trial.  Both look at the genetics of your tumor and try to match it to drugs on the market. LEARN MORE about NCI's MATCH TRIAL. 

LMS survivors offer their experience and inspiration to help fellow patients and 
their loved ones.

If you have a new topic to contribute, please pass it forward and contact Sharon 

NEW T-Shirts!

Comes in a few different colors and women, men and children's styles. Free shipping with Amazon Prime. Use our LMSdr Amazon Smile link!

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Block Book for Supporters 4
Free book
 from the R.A. Bloch Foundation

A step by step ways to help a relative or friend fight cancer


ribbonPinHand out ribbons to family and friends to celebrate your anniversary or birthday. Ribbons are free and have a business card attached to each one on how to donate to support LMS research. It's an easy fundraiser in honor of your battle.  Email Heidi to order!

 Here's to another year!

Mary Lavin, 11 yr. Thriver in Wisconsin

Educate Yourself and Question Everything 

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I actually wanted an early menopause (I never get what I want,) so of course my periods began happening more often and lasting forever. Everything I read about menopause stated the opposite was supposed to happen. Then I felt the lump (lower left pelvic area.) The gynecologist was thinking fibroid, but the pelvic ultrasound reported unusual characteristics. It was surgically removed on 11/2/2006, along with all those female sex organs and some lymph nodes. It was a ULMS tumor (9.5X6.5X5.5cm, 23-25 per 10hpf mitotic rate.)


My first 3-month CT scan showed spots in both lungs. Due to the original tumor being 90% positive for progesterone receptors I was prescribed Megace (magestrol acetate,) an oral synthetic progesterone. The spots in my lungs have remained the same since. I’m considered NED (no evidence of disease.)  I’ve had no radiation or chemo; just surgery and a couple of years of Megace.


Researching this cancer kept my mind busy and helped me make some good decisions.  What helped me the most was my dog Truffles. No matter what the weather or my attitude, she always got me out for a walk.  


My advice is to find a doctor with sarcoma experience that you can talk to. I wish I would have seen a sarcoma specialist sooner. That would have saved me some tearful appointments with my gynecologist.  He wanted to treat it as a common gynecological cancer, but I was diagnosed with a sarcoma. Also, write down questions for the doctor, get copies of all your medical reports and use the internet for research and support.

Have you survived with leiomyosarcoma for 7 years or more?  Want to share your story and pass the hope forward to those who need it?  Contact Sharon

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When you buy online via Smile.Amazon.Com you can designate a percentage of the proceeds to 
LMSarcoma Direct Research Foundation

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LMSeAlerts is an eNews service for families and professionals

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New!  Awareness ribbons for your events.

History of LMS Paraffin Block Drive  Video


Participate in the Paraffin Block Drive for LMS Research

LMS patients have donated over 500  paraffin tissue blocks for research  - please join us and build our tissue collection.

Shop & Donate!

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LMSdr T-shirts available 

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NEW T-Shirts!  Comes in a few different colors and available in women's, men and child styles. 

 Free shipping with Amazon Prime!

Read past issues of LMSeAlerts

LMSdr advocates for and funds LMS specific research. We have 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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LMSarcoma Direct Research Foundation
850 Pointe Pacific #5
Daly City, California 94014

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