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




LMSdr is looking forward to another year of serving the LMS community! So much was accomplished in 2016 that it will be hard to top it. 

Because of YOU, we were able to fund $255,000 worth of LMS research. Grants were awarded to Dr. Matt van de Rijn's ongoing LMS projects at Stanford and the International Collaboration studying LMS. Grant details

Many of us met in New Jersey/New York in April for our 3rd LMS Conference. Presentations of the latest LMS treatments and research were made by Sloan Kettering Sarcoma staff: Drs. Tap, Hensley, D'Angelo, Maybody, and Boa. Not to forget Dr. Matt van de Rijn and others.  

Our LMSdr Face Book group now helps over 1,850 members and the LMSeAlerts is read by 2,000.

And last, the project that took much of my sweat and tears... we launched our new website

What's next? We're already busy creating a new patient "boot camp" project to educate, guide and support the newly diagnosed and their loved ones.

We plan to attend the CTOS conference for sarcoma researchers in October to advocate for more LMS projects. As well as work with many other rare disease and sarcoma organizations for legislation and collaboration.

We again, rely on you to help us accelerate LMS research, in search for treatments that will save lives. This year, hold a fundraiser, shop Amazon Smile, participate in our events and give out ribbons.  For more ways to help see Get Involved on our website.

 we are working - not wishing - for a cure!

Sharon Anderson MSW
Executive Director, LMSdr

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If you are like most people... we set new goals for the new year, of which the most common one is to lose weight. For cancer patients it's better to focus on increasing your physical activity. Why?

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 

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.

Online 2nd Opinions
Dana Farber 5
Get an expert sarcoma consultation from anywhere in the world without traveling to Dana Farber in Boston.  

Typically, it takes 5 to 7 business days to collect your medical records, then 3 to 5 business days after your records have been collected to get your written online second opinion. Once you create an account, you will receive service from your own personal care coordinator and staff physician, who will guide you through the entire process, including:

  • Collecting your medical records from your local provider
  • Matching you with the most appropriate Dana-Farber provider
  • Interacting on your behalf with the Dana-Farber provider who reviews your case
  • Delivering your Dana-Farber online second opinion to you
  • Handling any questions you may have
  • Staying in touch to make sure you fully understand your treatment options
  • read more HERE

Olaratumab + Doxorubicin Approved

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photo by Tom Zapcic Photography

On 10/19/16 the FDA approved olaratumab (Lartruvo) for soft-tissue sarcoma when used with doxorubicin (Adriamycin) as first-line treatment. This is the first “first-line” treatment approved for sarcoma in 40 years.

See VIDEO with Dr. Tapp discussing the benefits of olaratumab.

Also see VIDEO of Dr. Mark Agulnik explaining benefits.

Current Immunotherapy Trials 
for Sarcomas!

Maki 4Sarcoma specialist and researcher Dr. Robert Maki, of Mount Sinai Hospital in NY, explains the  different types of immunotherapy trials in development. See the comprehensive list of the current clinical trials for sarcomas available using immunotherapy under each category. 

Phase II Tivozanib Results 

Out of 48 heavily pre-treated soft tissue sarcoma participants, 27 had LMS. Here are the responses of the 27 LMS patients at 16 weeks:
  • 1 had partial response
  • 14 had stable disease
  • 12 had progressive disease
From Annals of Oncology Access published 10/22/16
Clinical Trial Information: NCT01782313

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.

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

What is

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!  

New Immunotherapy Trial 
MD 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. 

Phase II ABBV-428 and Nivolumab

This phase II trial at M.D. Anderson Cancer Center is evaluating the anti-cancer effects of ABBV-428 when administered as monotherapy or in combination with nivolumab, in participants with advanced solid tumors.  Nivolumab (Opdivo) is a monoclonal antibody aimed at the PD-1 protein.  Details


Phase I HER-2 Vaccine for Solid Tumors

Offered at The James Ohio State University Medical Center, this trial will test injections for a HER-2 vaccine over six months. Patients are not required to HER-2 over-expression to participate.  Details

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Painting by LMS survivor, Kirsty Mcintyre 2016

CD47 Studies Take Immunotherapy  in New Directions

Onc. Live, Jane de Lartigue, PhD | October 31, 2016

During the past several decades, it has become increasingly clear that there is a complicated relationship between a tumor and the patient’s immune system. Although the genetic and epigenetic changes that fuel cancer development create foreign antigens that should trigger an immune response, one of the hallmarks of cancer is its ability to evade this immune recognition.
Read entire article HERE


rare diesease week

Plan to join us for Rare Disease Week on Capitol Hill, to be held February 27 through March 2, 2017, in Washington, DC. The week of events brings together rare-disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. There will be new members of the House and Senate next year, and it is critical for them to meet members of their communities affected by rare disease.

All events are free for patient advocates, and registration will open in early January.


Can't travel to RARE DISEASE WEEK?
You can still advocate for LMS!

Click here to submit your story to be hand-delivered to your Members of Congress Please submit your patient story by February 12, 2017.

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 open on January 3rd


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)


imagesKHQX7XUP 2  Looking for new options? Have your doctor order this free test to see if you have the gene rearrangement that might respond to the new drug Entrectinib by Ignyta.

Anlotinib for LMS?

Phase 2 study from China shows promising efficacy for LMS. The study included a range of soft tissue sarcoma subtypes. 15.66% (26 patients) had LMS. Of those LMS patients, 69.2% were progression-free at 12 weeks. The median progression-free survival rate was 11.7 months for LMS patients. 


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. 


t shirt on t shirt image 3Only $15 (includes shipping)
Sizes left:  M, L, XL
Shirts are unisex in a preshrunk 50/50 blend of cotton 
and polyester. Color is "blackberry."
Make great gifts!  
Add a notation with your NAME, ADDRESS, TEL, EMAIL (and please include SIZE). 

Sale!  DVDs of 2014 LMS Conference

dvdsWatch impressive speakers discuss LMS at the 2014 Conference in San Francisco.  Set of 4 DVDs only $50!
Speakers discuss the most updated information and treatment options for LMS, complementary therapies, our sponsored research projects at Stanford, interventional radiation techniques for LMS, coping strategies and much more.


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!

8 year Thriver, Li-Lien

Sharing my Journey
Li-Lien 2008

I often struggle on what to say or if I should say anything at all in response to the intros I read from the LMS groups. Everybody's cancer is different and I don't know what would be the best course of action. I recall that my first appointment with the doctor didn't go well, despite the fact that she was a highly recommended sarcoma expert. She did save my life by treating me aggressively. But at the first meeting, she was just like any doctor you might complain about: giving me a long list of side effects, not showing sympathy on the fact that I was the sole bread winner of a family of 7, not saying why I needed the treatment nor if that would work.

It was Dr. Dee, the old timers on this list will remember her, who propelled me beyond all fears of chemo to going through with the chemo. I shared my pathology report with Dr. Dee, and her first response was "You have very aggressive disease.  It would be best to use chemo to get some control of the disease, and then use surgery to remove whatever is left after the chemo, so that you have some disease free time after the surgery." In a few words, Dr. Dee helped me not only decide what to do next but also prepare for what was to come.

Along the way, the doctor had been supportive and encouraging and I learned from her: don't fear chemo, fear the cancer. Try to stay fit to help chemo fight the cancer.

It has been 8 years now and I have been blessed that I was able to go through all the treatments while working the whole time. I am still not out of the woods yet, but I am grateful that an aggressive cancer seems to have been controlled without my sacrificing much quality of life.

I hope my journey might provide some comfort to the newly diagnosed. I think the medical world has learned a lot about cancer, as well as sarcoma. So work closely with your treatment team, also research as much as you can. I wish the best of luck to all of us.

2008 ULMS (12*9*8.5cm) diagnosed after abdominal hysterectomy

2009 Jan-May 7 cycles of gem/tax because CT showed lesions in lungs

2009-10: 3 wedge resections for lung lesions

2011 Aug: metastasis -- 11x10mm soft tissue nodule within the subcutaneous fat of the left paramedian fat at the T10 level

2011 Sep-Nov: trial - Everolimus and Lenalidomide, horrible rashes, trial stopped, tumor removed surgically

2012 Feb: thoracotomy to remove left upper lobe and 2 wedges from lower lobe

2012 Jun-Nov: 8 cycles of gem/tax

NED till 2013 Jun scan - 2 nodules in right lung

2013 Jul: cryoablation to freeze one - didn't work

2014 Jan and April: microwave ablations for the other mets - maybe partially worked

2014 July: stereotactic body radiation therapy for 2 nodules in right lung

Radiation associated pneumonitis since mid-December, resolved over 6 months or so

2015 on: PET every 6 months, chest CT every 3-4 months

2015 Aug: SVC blocked at tip of the port's catheter

2015 Sep: removing port

2016 Aug: SBRT to metastatic mass between T8 and T9 (could be residual from 2011's growth)  -- the radiation seems to do what it was supposed to do so just continue the 3 month scans

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 
LMSarcoma Direct Research Foundation

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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.

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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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