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Wishing Working for the Cure
LMSarcoma Direct Research Foundation
                 January 2018



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Looking back, 2017 was a fruitful year for all of us!

Among LMSdr's accomplishments were: 

  • Production of the 7 LMS Boot Camp webinars for the newly diagnosed;
  • LMSdr Retreat in Hawaii on November 9th; 
  • New Scientific Advisors to LMSdr: Drs. Matt Hemming (Dana Farber), Alex Lazar (MD Anderson), Sandra D'Angelo (Sloan Kettering);
  • New collaborations with: SARC, National Sarcoma Foundation Advocates, Side EQ/Life Raft Group, and Broad Institute (Harvard) to create LMS cell lines for researchers;
  • Updated our grant application & approval process; and 
  • You raised over $150,000 for LMS research!

So what’s New for 2018?


Ed and Denice Kurtz will be retiring from President and Secretary of our board after 10 years of volunteering.  They have tirelessly managed all the donations, fiscal matters and guided LMSdr decisions. We are grateful for their dedication to the LMS families and community.


Sharon Anderson will be stepping up to President of LMSdr and handling the financial and policy duties with the guidance of our Treasurer, Ofir Gabay.


We welcome Janine DiTullio (LMS caregiver) to the position of Executive Director. Janine has served as a board member for the past 3 years. 


Coming aboard as Secretary is Vicki Strong (LMS survivor.) Vicki has been a volunteer moderator for our Facebook Group for the last 3 years. 


We have several new exciting research projects in the works!  

As always, we cannot do this important advocacy work without your support. We thank YOU for helping us work, not wish, for the cure!


2018 Grant Recipient...
Dr. Tatiana Omelchenko 
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LMSdr is excited to announce a new 2018 research grant recipient, Tatiana Omelchenko PhD from Memorial Sloan Kettering. 

Dr. Omelchenko's project, "Identification of a novel treatment strategy for uterine leiomyosarcoma in genotype defined patient population," will generate a genetically engineered mouse model based on genetic alterations found in uLMS patients and to model uLMS tumor growth inhibition. 

The $74,000 grant money for this specific project was raised and gifted by Kelly Kimball (patient) and Janine DiTullio (Executive Director.) 

Calling ALL San Francisco Area Families!
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Join our LMS get-together on Sunday January 7th.  RSVP Sharon for the details:

Exercise May Mitigate                        Doxorubicin-related Cardiotoxicity

Exercise during or after the administration of doxorubicin mitigates chemotherapy-related cardiotoxicity, according to an oral presentation at the Connective Tissue Oncology Society (CTOS) 2017 Annual Meeting.1 Exercise does not, furthermore, attenuate doxorubicin efficacy.  Read More

YMCA Exercise for Patients  

yymca 2The YMCA and LiveStrong Foundation have partnered together to offer low or no cost classes to 
cancer patients. 

Lasting Letters
A Complementary Service
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Everyone has a letter in them.  Whether to someone living or passed, whether to those you will see tomorrow or to the loved ones you are leaving behind.  This complementary service offered by Frish Brandt, a self-proclaimed 'letter mid-wife', is a chance for you to write a meaningful letter to someone you care about. The process is fluid and collaborative and can be completed over the phone. 

To learn more and set up an appointment, please visit

Recruiting - Phase III Trial of Anlotinib

Anlotinib is an oral drug which targets multiple RTKs, including vascular endothelial growth factor receptor type 2 (VEGFR2) and type 3 (VEGFR3). This agent may both inhibit angiogenesis and halt tumor cell growth. 

In the phase II study presented in 2016, 69.2% LMS patients were progression-free at 12 weeks.
In the current phase III trial, 2/3 of the LMS patients will receive Anlotinib and 1/3 will receive Dacarbazine to compare its effectiveness.

This trial is offered in Los Angeles, Stanford, Miami and Ann Arbor.  Contact Melissa Chen  t. 805-530-1550 to see if you are eligible for this trial.  See Clinical Trial 

10 in a MILLION
people get LMS 
according to the updated statistics from
NCI's SEER Program

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Complete Resection of Metastatic Soft Tissue Sarcoma Associated With Improved Disease-specific Survival
Complete disease resection predicts for improved disease-specific survival (DSS) among patients with primary metastatic soft tissue sarcoma (STS), according to a poster presentation at the Connective Tissue Oncology Society (CTOS) 2017 Annual Meeting.  Read More

Two Immunotherapy Trials for LMS 

Offered only at Fred Hutch in Seattle by Dr. Seth Pollack are two trials combining immunotherapy drugwith traditional cytotoxic chemotherapy.  

If interested, contact 
Dr. Seth Pollack t. 206-667-6629

Phase II Entrectinib Open 

Ignyta Inc. based in San Diego, California has just opened their Phase 2 trial testing their drug entrectinib that targets the gene translocations of NTRK, ROS1 and ALK. It's estimated that 1 in 20 LMS patients will have these gene rearrangements. Ignyta will work with your oncologist to test your tumor tissue to determine if you have these gene alterations to qualify for the trial.  It's offered at 30 sites in the US. See trial protocol. Contact Lisa Schecht             t. 858-332-0785

Results of Entrectinib 
for Specific Patients With Sarcoma Harboring Genetic Rearrangements

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Confirmed responses were demonstrated in 2 LMS patients  treated with entrectinib in the STARTRK-2 basket trial, according to the results of a case study presented at the 2017 Connective Tissue Oncology Society Annual Meeting that took place in Maui, Hawaii.

A 60-year-old woman with leiomyosarcoma metastatic to the abdomen, pelvis, liver, and left retroperitoneum, had an NPHP3-ALK gene fusion. After prior treatment of debulking surgery, tamoxifen, aldoxorubicin, and ifosfamide, she was treated with entrectinib and achieved a complete response by her eighth cycle and is still on the study after 7 months.

A 72-year-old female patient with uterine leiomyosarcoma and an IGFBP5-ALK gene fusion is still on the study at 13 months. She had previously received debulking surgery, radiotherapy with gemcitabine and cisplatin, aldoxorubicin and gemcitabine, nivolumab (Opdivo), and trabectedin (Yondelis). On entrectinib, she had a partial response of 32% reduction from baseline by cycle 8.

See above info for the ongoing clinical trial

Phase I Aerosol Gemcitabine
 in Patients With Solid Tumors and 
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Pulmonary Metastases


A new delivery approach - inhaled aerosol chemotherapy. Offered at MD Anderson. Contact 

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Safety Study of MGD009 in B7-H3-expressing Tumors

Read trial details

Axitinib and Pembrolizumab in Subjects With Advanced Alveolar Soft Part Sarcoma and Other Soft Tissue Sarcomas 

Gene and Vaccine Therapy in Treating Patients with Advanced Malignancies 

Read trial details

Combined Vaccine Therapy in Treating Patients with Metastatic Solid Tumors 

Read trial details

Gene-Modified T Cells, Vaccine Therapy, and Nivolumab in Treating Patients with Stage IV or Locally Advanced Solid Tumors Expressing NY-ESO-1

Read trial details

Gene-Modified T Cells, Vaccine Therapy, and Ipilimumab in Treating Patients With Locally Advanced or Metastatic Malignancies 

Read trial details

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For the entire month of February, you can show your love for all the LMS survivors and loved ones by making a donation to LMSdr.  Last February 2017, the LMS community raised $10,000 for LMS research to help find treatments that will work.  Please help us...every person counts!  Donate Here


Want to get your tumor genetically tested and then see if it can be matched with a drug that targets your mutation? Join the TAPUR Trial by ASCO.  It is not randomized and there are no drugs substituted with a placebo. They want to see how effective their testing and matching is. This trial is available at 113 sites. 

Nicole Bachtell Courage Award

In February of 2017, I sat down with Ken Calitri -- the VP for Human Resources for Artech. I was just starting Yondelis treatments. I wasn't tolerating the drug very well and I was scared. I told him my story.  


In April, Ken got me into the office, gathered everyone in our conference room and presented me with the "Annual Nicole Bachtell Courage Award" for 2017. This is the first such award.  He went on to share what he heard that day and most of the room teared up.


The award was $2,500 to me and a $2,500 match to the charity of my choice. There was only once choice and that is to give back to LMSdr for all of their

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hard work, and to get us a little bit closer to the cure. 

I'm not too vocal in the Facebook group and timing never works out for me to make it to the retreat, but I keep everyone in my prayers for comfort and ability to manage this disease. 


It is my humble honor to have been bestowed this generous gift. 


Nicole Bachtell

Managing Finances Webinar

Cancer is expensive. This presentation will cover tips for improving your financial health after a cancer diagnosis and treatment, including: 

  • Steps to take to rebuild your credit
  • How to deal with medical bills
  • Options for financial assistance
  • Things to consider before filing for bankruptcy
Wednesday, January 10, 2018 
1:00 PM ET/ 10:00 AM PT

This webinar is one of a series by

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Do you need help understanding your pathology report?
The Doctor's Doctor website offers clear explanations and will even translate your own report in plain English for you!  Go Here  

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FDA Reaffirms the Restriction of Morcellation 

Black-Box-Warning-Morcellators  After reviewing the latest   research, the U.S. Food   and Drug Administration   on 12/14/17 reaffirmed its   2014 warning that power   morcellators should rarely be used in gynecological surgery because of the risk of spreading a hidden uterine cancer.  Read more

11 Year Thriver, Kayla Killingsworth Douglas 




I live on Anastasia Island, St. Augustine Florida. I’ve lived on the same street all my life, on Lighthouse Ave. The St. Augustine Lighthouse is on the same street.

In July of 2006 I went to my GYN for my annual appointment. The doctor felt that my uterus was large. After an ultrasound and CT scan, it was discovered that there was a tumor. The biopsy was not conclusive as to the type of tumor. There was a time lapse. My mother was very ill and died of lung cancer in early December. On 1/9/07 I had a total abdominal hysterectomy.

Now here's the cool part, I was NED, no evidence of disease, until April 2015. Yep, I got a full eight years of being healthy and happy. I was very careful to have a CT scan and exam right on schedule all that time.

In April 2015, they found two tumors deep in my pelvis. For that surgery I chose to have the robotic assisted laparoscopic, surgery. The recovery was much easier, but I got two years before the cancer came back. I am uncomfortable with that decision, to do the robotic, although I was told that they would not be using morcelation. 

I had surgery again on March 2, 2017. This time it was open abdominal surgery to remove a tumor on the small intestine, one on the vaginal cuff and several in the lymph nodes in the pelvic area.

So that's it, no chemo and no radiation so far just surgery. I have no grand plans. I have lived my life in three month segments based on the scan schedule. I’ve never had any symptoms of the presence of the tumors so regular scans have been essential. I’ve been treated by the head of the department in a Sarcoma center. The quality of the work in the pathology and radiation department is important. If they read it wrong, the information to the doctor will also be wrong. So choosing the right doctor at a major sarcoma center has been essential.

Yep, I've been around a long time. During this time, I’ve tried to ruminate as little as possible. I have spent time with my three sons and my five grandchildren, sailed on the Atlantic Ocean and played percussion and sang back-up vocals for the Ancient City Slickers band. I have lived and loved and celebrated. Wishing you much happiness. Blessings to all of you, from Anastasia Island, in the shadow of my lighthouse, to you!

Kayla 5

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


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!


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

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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.

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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850 Pointe Pacific #5
Daly City, California 94014

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