Wishing Working for the Cure
LMSarcoma Direct Research Foundation
LMSeAlerts - January 2017
HAPPY NEW YEAR
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 www.LMSdr.org.
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
EXERCISE and CANCER
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
Online 2nd Opinions
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,
- 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
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
Sarcoma 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:
From Annals of Oncology Access published 10/22/16
- 1 had partial response
- 14 had stable disease
- 12 had progressive disease
Clinical Trial Information: NCT01782313
Maximizing Therapeutic Response in Leiomyosarcoma
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
CRI offers free services to help you find the right immunotherapy clinical trial for you.
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
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
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.
RARE DISEASE WEEK on CAPITOL HILL
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!
National Conference on Work and Cancer
June 23rd, 2017
CUNY Graduate Center, NYC
2016 LMSdr Conference Video
If you attended the LMSdr Conference in New 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)
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.
TAPUR TRIAL PODCAST
NCI's MATCH TRIAL
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.
Only $15 (includes shipping)
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Shirts are unisex in a preshrunk 50/50 blend of cotton
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Sale! DVDs of 2014 LMS Conference
Watch 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.
CELEBRATE YOUR SURVIVORSHIP!
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!
8 year Thriver, Li-Lien
Sharing my Journey
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 2SharonAnderson@gmail.com
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LMSarcoma Direct Research Foundation