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



The field of immunotherapy is exploding in the cancer research world. And this time, sarcomas are not being left out! This March newsletter is focusing on immunotherapy clinical

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!  

NCI's Cancer Vaccine Primer

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

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IMMUNOTHERAPY - An Introduction Video

GDC-0575 Combined with Gemcitabine

Phase I results report that the first two LMS patients treated with GDC-0575 combined with gemcitabine, led 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 


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


Durvalumab and Tremelimumab

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. 

A Phase 1/2 Study of In Situ Vaccination With Tremelimumab and IV Durvalumab Plus PolyICLC in Subjects With Advanced, Measurable, Biopsy-accessible Cancers  Details

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

Intratumoral Hiltonol Vaccine Trial

This phase II trial injects Poly-ICLC, (Hiltonol® ) directly into the patient's tumor to attempt to get the immune system to recognize and destroy the cancer cells.  

Gene and Vaccine Therapy in Treating Patients with Advanced Malignancies          Details

Nivolumab and Synthetic Long E6/E7 Peptides Vaccine HPV-01 in Treating Patients with Recurrent or Metastatic Incurable HPV-16-Positive Solid Tumors  Details

Combined Vaccine Therapy in Treating Patients with Metastatic Solid Tumors  Details

Trial of CMB305 and Atezolizumab in Patients With Sarcoma  Details  

Phase 1 Study of Atezolizumab (an Engineered Anti-PDL1 Antibody) in Patients With Locally Advanced or Metastatic Solid Tumors   Details

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

A Phase 1b Safety Study of CMB305 (Sequentially Administered LV305 and G305) in Patients With Locally Advanced, Relapsed, or Metastatic Cancer Expressing NY-ESO-1   Details

Vaccine Therapy and Pembrolizumab in Treating Patients with Advanced Solid Tumors That Have Failed Prior Therapy and That Cannot Be Removed By Surgery  Details

A Study of DSP-7888 Dosing Emulsion in Adult Patients With Advanced Malignancies  Details

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

NY-ESO-1-Specific T-cells in Treating Patients With Advanced NY-ESO-1-Expressing Sarcomas Receiving Palliative Radiation Therapy  Details

Phase 1b Safety Study of CMB305 (Sequentially Administered LV305 and G305) in Patients With Locally Advanced, Relapsed, or Metastatic Cancer Expressing NY-ESO-1  Details

A Study of DSP-7888 Dosing Emulsion in Adult Patients With Advanced Malignancies  Details

Dendritic Cell Vaccine With or Without Gemcitabine Pre-Treatment for Adults and Children With Sarcoma  Details

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

Combination of MK3475 and Metronomic Cyclophosphamide in Patients With Advanced Sarcomas: Multicentre Phase II Trial (PEMBROSARC)  Details

Study of Pembrolizumab Plus Chemotherapy in Patients With Advanced Cancer (PembroPlus)  Details

A Dose Escalation Study Of PF-06801591 In Melanoma, Head And Neck Cancer (SCCHN), Ovarian, Sarcoma, Hodgkin Lymphoma or Other Solid Tumors  Details

Trial of TRX518 (Anti-GITR mAb) in Stage III or IV Malignant Melanoma or Other Solid Tumors (TRX518-001)  Details

Safety Study of Enoblituzumab (MGA271) in Combination With Ipilimumab in Refractory Cancer  Details

Safety Study of Enoblituzumab (MGA271) in Combination With Pembrolizumab in Refractory Cancer  Details

Safety Study of MGD009 in B7-H3-expressing Tumors  Details

A Study of Metronomic CP and JX-594 in Patients With Advanced Breast Cancer and Advanced Soft-tissue Sarcoma (METROmaJX)   Details

TVEC and Preop Radiation for Sarcoma  Details

Safety and Effect of GL-ONC1 Administered IV With or Without Eculizumab Prior to Surgery to Patients With Solid Organ Cancers Undergoing Surgery  Details

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LMS Purple Ribbon Mandala
Artist: Jagger Crumpton, 15yrs old, Concord, NC
In honor of his father, John Crumpton 
Colored pencils and water color on paper


The GAO- Government Accountability Office sheds light on why the FDA took 23 years to warn physicians and patients about the potentially fatal risks of power morcellators used in gynecological proceedures...  READ MORE 

President Trump, there is a critical national health threat in the United States that requires your presign the petitionsidential executive action.
In particular, the medical surgical device known as the power morcellator, which for 23 years has been devastating women’s lives across the United States, for which the Government Accountability Office (GAO) recently criticised the FDA's lack of action.

April 21st  9:00am - 4:00pm

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.

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 Anthony Norman will be running  the Rock N Roll Raleigh Marathon in honor of Rodney L. Williamson, who passed on 8/26/15. Pledges/donations will be given to his memorial fund at LMSarcoma Direct Research Foundation.  Pledge Here


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You did it!  In February, the LMS community donated $10,000 for research. Thank you for opening your hearts and investing in a cure.  

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.


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!

26 Years Thriving with ULMS 

by daughter Ines Jarvis

Ines de Almeida-12-31-2011

Ines, Juliana and Ines

My mother, Ines de Almeida was diagnosed with LMS in 1990 after going in for a routine hysterectomy as a result of troublesome fibroids. The pathology came back as LMS. The thinking in 1990 was to simply leave her alone as they had "gotten it all."

Fast forward 14 years to 2004.

My mother experienced chest pains.  A hospital visit revealed a questionable mass in her lung and that mass led to grueling lung surgery.  By then, my mother was 76 years old.

After her lung surgery, my mother had additional surgeries, radiation, chemo, and cyberknife as the disease was found in her neck, gluteal, shoulder, pancreas and more. In the early days, I had her followed by our local oncologist on Long Island as well as MSKCC but then gained confidence in our local oncologist.

At the beginning of 2015, shortly before her 87th birthday, we decided to cease all treatments.  Her last treatment was a mild dose of Doxil, but it didn't make a dent so her doctor released her from formal care.  She got discharged from hospice because she was doing too well.  At 87, we weren't going after anything else as that would alter her qualify of life.

I never ever dreamed she'd make it to where she did, but my mother was incredibly tough, resilient and steadfast in her religious belief. I believe those elements helped her.  All on a barely 5 ft. frame!  She also lived with us and the love of her family, relationship with my daughter (her granddaughter) and crazy antics by our three small dogs made for a great deal of laughter, which we all felt made for good medicine. She also enjoyed her glass of wine.

At 88, she had other medical challenges but on August 13th 2016 we lost her to LMS.  Her passing was peaceful and I couldn't wish anything better for her.

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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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.

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LMSdr T-shirts available 

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T-shirts are unisex, preshrunk 50/50 cotton and polyester, color is blackberry.  Sizes M, L, XXL.

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

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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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