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Wishing Working for the Cure
LMSarcoma Direct Research Foundation
                     July 2017



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This month's newsletter is dedicated to Dr. Amy Reed, in  honor of her heroic advocacy with her devoted husband, Dr. Hooman Noorchashm. Together they challenged the gynecological establishment to ban the process of routine morcellation for uterine fibroids, in which 1 in 350 women actually has leiomyosarcoma or another cancer. Their tenacious efforts to also find a cure for leiomyosarcoma will continue. She will not be forgotten by the leiomyosarcoma community of patients and loved ones.

Sharon Anderson MSW
Executive Director, LMSarcoma Direct Research Foundation


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(means to give life, heal, cure)

LMSdr RETREAT in Kihei, Maui, Hawaii
Join us for a day in Kihei of healing workshops & dinner with sarcoma experts. Group activities for the rest of the week will be available including a luau, paint & sip party, snorkeling, hula lessons and more!
November 9th
10am - 10pm
$50 per person (includes lunch & dinner)

Let's Talk About It!
Psychological intervention can substantially lower fear of cancer recurrence (FCR) in survivors, improving their quality of life, anxiety and cancer-specific distress, according to a phase 2 randomized clinical trial presented at the 2017 ASCO Annual Meeting. 

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LMSarcoma Direct Research's
 Facebook Support Group!
Note:  this is a closed, confidential group. When you request to join, check your PMs (personal messager in FB) for the moderators' questions and answer them to be approved.

Are you having surgery soon?
Donate live LMS tissue for research!
It's easy... once you sign the consent, you are done.

Calling Rare Artists!
The Rare Artists contest has begun.  
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First extensive immune profiling of sarcomas 

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shows  LMS likely susceptible to immunotherapy!

Read article

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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Aldoxorubicin Out-Performs Doxorubicin 
in Several Ways

Read latest results presented at ASCO 6/2/17.

Morcellation worsens survival outcomes in patients with undiagnosed uterine leiomyosarcomas: A retrospective MITO group study.

An Italian gynecological group concludes that morcellation increase the risk of death in patients affected by undiagnosed LMS. Further prospective studies are warranted in order to assess the risk to benefit ratio of power morcellator utilization in patients with apparent benign uterine myomas.  Read study 

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

Search their data base at
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!  

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Systemic treatment in

advanced soft tissue sarcoma:

what is standard, what is new

Beyond the first line [doxorubicine,] evidence for medical treatment in STS is less robust and all the more driven by histology. Thus, the introduction of kinases and small molecule inhibitors in the treatment armamentarium for STS is a major achievement in this setting. Preliminary data on immunotherapy are also available and discussed in this review.  Read article 

Next Generation Sequencing & 
Sarcoma Outcomes
Read report from ASCO 6/2/17


Immunotherapy drug CMB305 Results

In the June 2 ASCO presentation of the Phase 1 clinical trial 
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results, Somaiah will report that in 16 of 25 participants with advanced, soft-tissue sarcoma, tumors stopped growing after the patients received injections of CMB305. Of these, about three-quarters had no disease progression by three months, 36 percent had no disease at six months and 83 percent of them were still alive after one year.  
Read more about CMB305

Photo:  Dr. Seth Pollack of Fred Hutchington Cancer Research Center in Seattle.


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

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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.

Pembrolizuma Fails LMS

Pembrolizumab shows antitumor activity in osteosarcoma and undifferentiated pleomorphic sarcoma (UPS), but not other types of soft tissue sarcomas (STSs), according to a study  that will be presented at the 2017 American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago.

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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

Free Advocate Help
Do you need someone to help you battle your insurance? Need help with your medical debts or prescription co-pays? The Patient Advocate Foundation offers free caseworkers, live chats and webinars for patients. Call them at (800) 532-5274.

2016 LMSdr Conference Video

If you attended the LMSdr Conference in 
New 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)

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!

T-shirt LMSdr

CURE Magazine  

Cure Today is a free magazine for patients and loved ones, that is easy to read and features the most up-to-date topics.

Free book
 from the R.A. Bloch Foundation

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


Hand 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!

 Michelle Simon
Long Term Thriver

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November 2009, I was diagnosed with LMS. It was the fourth and final differential diagnosis after a resection of the retroperitoneum and hysterectomy. Suddenly cancer belonged to me. A few days after surgery, my husband and I met with an outstanding sarcoma specialist. We learned that my disease was incurable and terminal. My time line was short, probably three months. We cried in each other’s arms. How would we tell our children? Who would take care of my mom in assisted living? We were crushed. What would we do?

The answer came from my best friend. She researched and explored all options. The next thing I knew, we were on a plane, on our way to get a second opinion. We went to a cancer center that was a place of hope and miracles. My doctor asked me why I came. I responded, “I want to live.” I immediately started adjuvant chemotherapy.

NED became my new best friend, but our friendship was short lived. My cancer reoccurred, metastasizing to my lungs and back to my abdomen. I’ve had six chemotherapies, two thoracotomies, two cyber knife radiations, two trials, pain management and rehabilitation.

I meditate daily and envelop myself in prayer. Time moved on and on. My loved ones, doctors and positive attitude keep me going. My pain management specialist told me that patients do better with positive attitudes. I also rescued a white coton dog. He fills my life with unconditional love. Olli makes sure I get up every morning. He has to get up and out and so do I. My husband says, “Keep going and kick the can down the road. More time means more success.” My children call my disease “Fake C”. It’s easier for them and always a laugh.

They won’t let me think of quitting. Quitting is not an option! My husband and I keep researching new protocols. I will try anything my brilliant doctors believe could benefit me. Down the road are more trials and immunotherapy, promising game changers.

I own this disease. It doesn’t own me! My goal is to change LMS from a fatal disease into a chronic disease that is treatable and manageable. I continue kicking the can down the road. I am writing this for all who share this challenging, difficult journey with me. Keep on living! Where there is life, there is hope, love and miracles.

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


When you buy online via Smile.Amazon.Com  you can designate a percentage of the proceeds to LMSdr!

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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.

Having Surgery?  Donate Fresh Tumor for Research

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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

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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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