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Wishing Working for the Cure
LMSarcoma Direct Research Foundation
                 November 2017



 Ho'ola Retreat in Hawaii
Another fun, loving and educational
 LMSdr conference!

The workshop theme for the day was about Ho'ola... to give life, heal and cure. We problem solved in small support groups, learned how to use Emotional Freedom Technique of  acupressure, conducted self-hypnosis.... and more.

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A few of us survivors

Our evening dinner speakers educated us on the following topics:
  • The Newest LMS Trials & Treatments by Dr.  Sant Chawla (Sarcoma Oncology Center)
  • Immunotherapy and LMS by Dr. Seth Pollack (Seattle Cancer Care)
  • Circulating LMS DNA Project by Dr. Matt van de Rijn (Stanford)
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Speakers Drs. Pollack & van de Rijn


Liddy Shriver Award for

 New Sarcoma Researchers

Dr. Stephen Lessnick, President of the Connective Tissue Oncology Society (CTOS), announced the creation of the Liddy Shriver Early Career Research Award at the opening session of the CTOS annual meeting. The elite $1 million international award will honor accomplished early career scientists and will provide each recipient with a $50,000 grant for further sarcoma research. One person will be selected for the honor each year.


See for the details ....

Regorafenib may help with Stability

Safety and efficacy of regorafenib in patients with advanced soft tissue sarcoma (REGOSARC): a randomised, double-blind, placebo-controlled, phase 2 trial
Lancet Oncology, The, 2016-12-01, Volume 17, Issue 12, Pages 1732-1742,

The LMS patients treated with Regorafenib had longer progression-free survival compared to LMS patients who were treated with placebo.

Of the 27 evaluated LMS patients:
Partial Response - 0
Stable Disease - 24 (86%)
Progressive Disease - 3 (11%)

Adjuvant Gem/Tax Offers No Benefit 
for ULMS Stage 1

A study just published, ends the long debate over the use of adjuvant gemcitabine/docetaxel.  
The use of gem/tax chemo for stage 1 ULMS, when there is no evidence of disease has significantly increased in the last decade, despite unclear benefit.  Adjuvant gem/tax does not appear to alter survival outcomes, compared to having no chemotherapy.

 Adjuvant gemcitabine-docetaxel chemotherapy for stage I uterine Leiomyosarcoma: trends and survival outcomes, R.D. Littell, L.-Y. Tucker, et al., Gynecol. Oncol. 147 (1) (2017) 10–16.

New Phase I/II Keytruda and Doxorubicin Trial

New trial offered by Seth Pollack MD at Fred Hutchinson
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 Cancer Research Center, is enrolling sarcoma patients who's tumors are not able to be removed by surgery. Participants can not have had prior doxorubicin or PD-1  treatments previously.     Details

Phase I/II Avelumab and Trabectedin

This new trial has not yet began recruitment but may open in the near future at Fred Hutchinson Cancer Research Center in Seattle.  Details


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T-shirts, hoodies, mugs, totes, notebooks and more!


UCLA opens clinical trial for cancers with the NY-ESO-1 tumor marker

Directed by Dr. Antoni Ribas, the trial is the first to genetically engineer blood-forming stem cells to produce cancer-fighting white blood cells called T cells, which constitute part of the immune system.   Detail

Women's Softball Tournament for LMS

On the weekend of October 20th-22nd the Bay Area Showcase (BAS) dedicated their women's softball tournament to raising money for LMS in honor of Dr. Theresa Perales at the Twin Creeks Sport Arena in Sunnyvale, California. She was very athletic and loved the game of softball.  

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LMS survivors Sarah Robinson, Theresa Buchholz and Sharon Anderson volunteered all weekend to alongside Theresa's family. Thank you Bob Perales for organizing this wonderful event!

Phase II Results  
Pazopanib (Votrient) and Gemcitabine combination 

1 CR, 22 PRs (21.8%), and 64 patients (63.4%) with SD. Fourteen patients (13.9%) experienced progressive disease.
Read more HERE
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Distinct molecular subtypes of uLMS respond differently to chemotherapy treatment.

Two distinct molecular subtypes of ULMS were defined based on different gene expression signatures. Subtype I ULMS recapitulated low-grade ULMS, the gene expression pattern of which resembled normal smooth muscle cells, characterized by overexpression of smooth muscle function genes such as LMOD1, SLMAP, MYLK, MYH11. In contrast, subtype II ULMS recapitulated high-grade ULMS with higher tumor weight and invasion rate, and was characterized by overexpression of genes involved in the pathway of epithelial to mesenchymal transition and tumorigenesis, such as CDK6, MAPK13 and HOXA1.    ABSTRACT

Alexander Lazar MD, PhD Joins LMSdr

Dr. Lazar has joined LMSdr's Scientific Advisory Committee to
 evaluate research grant requests. He is currently an Associate Professor at The University of Texas M.D. Anderson Cancer Center. His work focuses on the diagnosis of bone and soft tissue tumors and solid tumor molecular testing, currently focused on next generation based sequencing for therapeutic selection and triage to clinical trials. 

Local LMS Support Groups!

Find families near you to get-together with.  If you'd like to be listed as a contact for your area email Sharon Anderson at     

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!

LMSarcoma Direct Research Foundation

November 28th

LMS Boot Camp

LEARN the basics of LMS and what you should know to help you survive.  This is an entertaining crash course with info you’ll not get anywhere else. There are 7 videos to watch.

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Topics Covered

  • Overview of Soft Tissue Sarcoma
  • The Importance of the 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
  • Stress Management Tips
  • Questions for Our Panel of Experts

Immunotherapy Patient Summit - Tampa

December 9th, 10am - 3:30pm (EST)


Free - includes lunch

People of all ages, cancer types, and stages are encouraged to attend this FREE half-day Saturday event. Caregivers, friends, family, and advocates are also welcome to join us at this important educational summit. Register Here


Join a free 12 week exercise program 
for cancer survivors!

LIVESTRONG partnered with the YMCA of the USA in 2007 to create LIVESTRONG at the YMCA, a 12-week physical activity program designed to get survivors back on their feet. The instructors are trained in cancer survivorship, post-rehabilitation exercise and supportive cancer care. Survivors and often their families receive a membership at the YMCA for the duration of the program.


Long Term Thriver, David Cornell

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 “The Saga of the Lump”
   Retroperitoneal 2002

   15 years, no recurrence

I was part of a clinical trial, RTOG 0124 at MD Anderson. Typically, surgery is done first and then chemo and radiation. This protocol reversed the order. I had four rounds of the Red Devil (Adriamycin) and Ifosfamide and Mesna. Then I received 28 doses of radiation to give the surgeon dead tissue to cut in. Then I had surgery to remove the sarcoma and also got intraoperative radiation. 

My advice...

First, seek treatment from a sarcoma center. I had two good friends who did not, and they died early. There are not guarantees, but don’t handicap yourself unnecessarily. 

Second, consider the outcome of RTOG 0124. Treatment in the sequence of chemo/radiation/surgery for a multimodal treatment has been successful. The standard of care is cut first. There are downsides to that.

Third, if you can step out of your life for treatment, do so. Remember that you have one job – beating the damn lump. 

Fourth, use whatever anti-nausea medicine prescribed for you.  Do not save it for your old age.  Ginger can help and hard rock sugar candy can also.

Fifth, eat protein during chemo and radiation.  Not a time for vegan diets.  Eat something that had a mother and a face.  Your body needs it.  And do eat, even though you do not want to because it hurts.  Not the time for dieting.  Also, exercise.  Your body is in a fight.  Help it.  Even ‘bad’ calories are better than none.  Donuts and ice cream are OK.

Sixth, be kind to everyone, particularly your spouse and the rest of your family.  You will feel like crap and the temptation is to grouse about it.  Don’t.  They don’t deserve it and you don’t need it.

Seventh, don’t be vain.  You will lose hair and it will grow back.  Refusing treatment because it is ‘not pretty’ or ‘it hurts’ is not good enough.  

Eighth, step up your hygiene.  Wash everywhere often.  Your own gut bacteria is not your friend.  Constantly wash your hands and that goes for those giving you care. 

Ninth, don’t go into hiding.  People do care.  Let them pray for you, or think good thoughts.  Be ecumenical.  Ask Christians of all flavors, Muslims, Jews, Buddhists, Jains, and anyone else you know to pray for you.  Good comes of it.  Be social and emphasize the positive.  It helps them and you.

Tenth, work on keeping a positive attitude.  It is self-fulfilling, whatever attitude you take.  It is a choice that you control.

Eleventh, get sleep. Your body needs it.  Whatever works, let it work. Ceiling fans are good for a breeze and white noise.

Twelfth, keep busy.  If you can, work at home.  Don’t sit around and feel sorry for yourself.  Keep a journal, particularly during chemo.  The journal will tell you on subsequent rounds what to expect.  As you can, do up beat things.

Thirteenth, radiation gives you a sunburn-like burn.  The major immediate impact is tiredness.  Keep up all that you did for chemo because your body is still fighting.


Fourteenth, when you are released, take inventory.  Your body has been aged.  Do not expect you will have the same stamina that you did.  You will recover, but give yourself rest both of mind and body.  And thank all those folks who have helped you and prayed for you.  Each has loved you and you love each of them. 

Start A Tribute Fund

Want to create a page about you or your loved one's battle with LMS?  It's easy!  Go to  Tribute Fund  and fill out the questions to make your page.  Add photos too.  Make sure your family and friends state the name of the fund when donating.  Monies go to LMS research!

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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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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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