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Wishing Working for the Cure
LMSarcoma Direct Research Foundation
                September 2017




(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
9am - 9pm
$60 per person (includes lunch & dinner)

Seth Pollack MD - Retreat Speaker

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Featured speaker, Dr. Pollack from Fred Hutch / Seattle Cancer Care Alliance, will talk about his speciality, "Immunotherapy and Sarcoma/LMS."

Dr. Pollack has completed several clinical trials, including Immunotherapy drugs CMB305 and G100.  

He is 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. 

Dr. Pollack discusses check-point and T-cell therapies for sarcoma in this  ASCO 2016 video 

Come learn about the most current immunotherapy work, and be prepared to ask your questions to Dr. Pollack!

CancerCare Connect Education Workshop
 is presenting 
“Update on Soft Tissue Sarcoma” 
Friday October 6, 2017, 
1:30pm-2:30pm EST.  

You can listen to the workshop on the telephone or online for free.

The speakers are:
Dr. Suzanne George – Dana Farber Cancer Institute
Dr. Thomas DeLaney  - Massachusetts General Hospital
Dr. John Mullinax – Moffitt Cancer Center
Carolyn Messner – CancerCare

Workshop topics are:
Overview of Soft Tissue Sarcoma
Importance of Pathology Report
The Role of Surgery, Chemotherapy, Radiation and Targeted Therapy
New Treatment Approaches
The Importance of Clinical Trials
Side Effect and Pain Management
Key Questions to Ask Your Health Care Team
Follow-up Care
Questions for the Panel of Experts

You may register for this workshop online at or 
by phone at 800-813-HOPE (4673)

When this workshop is finished, you can listen to a podcast of this workshop and other past workshops at


NEW!  IBRANCE (palbociclib) is a drug just approved for estrogen and/or progesterone positive cancers for women who are also HER2 positive. It is the first CDK 4/6 inhibitor. Ibrance is to be taken with an aromatase inhibitor or fulvestrant.  Learn more.  Get financial assistance from Pfizer. 

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KISQALI® (ribociclib) is a new FDA approved  kinase inhibitor to be used in combination with an aromatase inhibitor (AI) to treat women who have gone through menopause with hormone receptor (HR)-positive, (HER2)-negative breast cancer that has spread to other parts of the body (metastatic).

Have a Surgery Planned?  Donate Tissue!

The Rare Cancer Research Foundation (RCRF) has agreed to include LMS into a project they have with the Broad Institute to create live growing LMS cell lines (in petri dishes) for researchers to use!

IF you are having an upcoming surgery, please donate some of your live tumor tissue to this project. Once you sign the consent form… you are done. There is no cost or shipping on your part. Your tissue cells will be anonymous – so you will NOT be able to know what is found out with your cells specifically. But you will help advance LMS research for us all.

Schedule Your Tissue Donation

Thank you NLMSF for making this opportunity happen with the RCRF!

LMSdr Joins...

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Track, Manage, Compare Side Effects

My Side EQ is an interactive site for patients, caregivers and doctors where you can:

  • ·       Track your side effects and compare your        experiences to others like you
  • ·       Read patient tips and submit your own
  • ·       Learn best practices from experts


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NEW! Phase III Trial of Anlotinib

Now recruiting at the University of Miami Sylvester Comprehensive Cancer Center, Anlotinib is an multi-target tyrosine kinase inhibitor drug in trial for LMS. 2/3 of the patients will randomly get Anlotinib and the other 1/3 will get dacarbazine, to compare which is more effective.  

PD-1 inhibition has Limited Activity 

Phase 2 trial results, using programmed cell death protein 1 
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(PD-1) targeting in combination with metronomic chemotherapy in sarcomas (including LMS) found little effectiveness. This may be explained by an immunosuppressive tumor microenvironment resulting from macrophage infiltration and IDO1 pathway activation.  
Read more                                         Jean-Yves Blay MD

Keytruda Fails LMS

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

Aldoxorubicin vs Standard Chemos for LMS
Aldoxorubicin significantly prolongs progression-free survival (PFS) and provides better objective response rates than  standard of care (SOC) in the treatment of soft tissue sarcomas.  Read report from ASCO 2017

Sant Chawla, MD
Sarcoma Oncology Center in Santa Monica, California

Phase II Regorafenib Shows Clinical Benefit

For patients with doxorubicin-pretreated soft-tissue sarcoma, regorafenib significantly improved quality-adjusted survival in comparison with a placebo.

LMSdr's New Scientific Advisory Members!

sandra d'angelo 4Dr. Sandra D'Angelo is an attending physician in Memorial Sloan Kettering's Sarcoma Program, researching immunotherapy.  She is a member of the Immunotherapeutics Clinic (ITC), which designs and conducts early clinical trials using investigational immunotherapies.  

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Dr. Matthew Hemming is a sarcoma specialist and researcher at Dana Farber.  He was awarded the 2017 Young Investigators Award at ASCO.

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Dr. Gardner is an anatomical and clinical pathologist who specializes in bone and soft tissue sarcomas. He trained under Dr. Sharon Weiss, a world renowned expert in bone and soft tissue sarcoma pathology. Currently, he is an Assistant Professor of Pathology  at the University of Arkansas for Medical Sciences. 

New 2nd Opinion, Resources

Check out the new online sarcoma consultation programs, more financial help for 2nd opinions at a sarcoma center and more!

Legal, Financial & Advocate Help

Triage Cancer

A one-stop online resource!  Triage Cancer offers help with:
  • disability insurance (SSDI)
  • health care insurance
  • financial income insurance (SDI)
  • financial aid organizations
  • legal assistance and advocacy
  • employment 
  • educational blog
  • other resources for cancer survivors

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LMS Boot Camp webinars were written by Sharon Anderson,  Executive Director. She talks openly and frankly about the most important things you need to know to survive. Sharon’s knowledge comes from her research, discussions with sarcoma experts and personal experience helping patients since 2002, after she was diagnosed with stage 4 ULMS.

CRI summit
 September 23rd


* Immunotherapy basics you need to know
* Latest research update from the experts
* Patient experience with immunotherapy
* Clinical trials: what they are, how to access them


Show Your Support!
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Add the LMSdr Facebook frame to your photo

Long Term Thriver... Sandy Durbin

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What is your LMS story? My initial tumor was in my bladder discovered in 2001. I had symptoms for a couple years before my diagnosis, so I think I was misdiagnosed all that time with recurrent UTIs. By the time we figured out what was going on, the tumor was 11 cm diameter. My bladder was removed, parts of my intestine, & an anterior exenteration done. Then lots of reconstruction. It was recommended I do radiation therapy at that time but I declined. 

In 2004, 11 metastatic tumors were found in both lungs. It took a couple tries to find a surgeon who would remove them. Dr. Thomas Rice at the Cleveland Clinic was the one that agreed to do the surgery for me. One lung at a time (with a few months recovery in between), the tumors were resected. Shortly after, I started a chemotherapy regimen of adriamycim / ifofsamide. It was awful & made me feel like I’d be better off dead. I was exhausted, depressed, cloudy-headed, & nothing controlled my nausea/vomiting. I quit that treatment about ¾ of the way through.

I then switched to more natural methods. I think I owe much of my recovery to guided imagery. The main one I did was by Dr. Andrew Weil, Heal Yourself With Medical Hypnosis. I worked through these imageries for a couple hours a day at the time & still do them occassionally. I also ate/took several supplements, including but not limited to: astragalus root, beta glucans, reishi & maitake mushrooms, blend of proteolytic enzymes.

What is your current LMS situation? I’ve been disease free since late 2004.

If you could start all over... what would you do differently? I wouldn’t do the chemotherapy again.

What are you glad you did? I took 9 months off work to learn about health, homeostasis, introspection, meditation, & nutrition before I got back into this game of life. I read all my own medical records & viewed them as individual thing from all the horrible things I knew this disease to be.

Advise to newbies? Don’t let rough days define your recovery. Bawl it out, eat some comfort food, then tell yourself to suck it up & get back to being a fighter. You’ll never know how strong you are until being strong is the only choice you have. 


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!


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


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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LMSarcoma Direct Research Foundation
850 Pointe Pacific #5
Daly City, California 94014

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