Leiomyosarcoma Community Blog
This is a blog for the LMS community of patients, caregivers, doctors and researchers. It serves as a vehicle to give you a voice, share information and educate each other. Topics include anything to do with LMS… patient stories, poems, clinical trial explanations, book reviews and interviews with doctors and researchers on the latest treatments and projects. Newly diagnosed with LMS? Call us for help navigating this new journey. Caregivers are encouraged to call us too! 1-866-912-2730
BE A GUEST WRITER
If you would like to be a guest writer for Leiomyosarcoma Community Blog, please contact us at 2LMSDR@gmail.com. Please include a photo of yourself or a graphic about the topic. Submissions need to be Leiomyosarcoma (LMS) related in some way and your own original writing.
You Make a Difference!
When I was diagnosed with uterine leiomyosarcoma (uLMS) in January of 2002, the outlook for my survival was very grim. There was very little research on LMS. Now 19 years later, I can honestly say that we are so better off, thanks to the LMS patients and loved ones’...
Susan Hampton, LMS Survivor for 18 years
DONATE HEREHello fellow survivors! My name is Susan Hampton and I'm a Leiomyosarcoma survivor and thriver for 18 years. One Saturday in early August 2001, I woke and ran my hands down the tops of my thighs. I had a lot on my mind as I was due to leave for China within...
Meet Joanie, 12 Year LMS Thriver
By Joanie Mulvey December 1, 2020 When confronted with LMS, it is easy to think “OMG... I’m going to die".... and become so scared and depressed. Yet, I recommend framing things to yourself in a different way. We can be grateful that our cancer was found and...
CHEMO TIPS
We asked our LMSDR Facebook group members for their tips on how to deal with chemo days. KM: I brought popsicles. I got sick of sucking on ice and used them during infusion. It was a pain but worth it. Jolly Rancher candy helped with the metallic taste for me. Bring...
Our Leiomyosarcoma Heroes
November is National Caregivers Month LMSDR honors our leiomyosarcoma caregivers! We asked our LMS survivors to tell us why their caregiver was special. By Jane Heinrich My sister Kay Anderson is our family angel. Of the five of us in my direct family, four of us...
Painting for the Cure!
December 30th PAINTING PARTY FUNDRAISER Join us for a fun virtual fundraiser to raise money for leiomyosarcoma research. For $50 you get supplies and virtual instruction (shipping included). NO SKILLS NEEDED! The instructor will help you step by step to make...
Estelle Bar Ness, Long Term Leiomyosarcoma Thriver
A Trail Blazer for LMS Patients After receiving her ULMS diagnosis in 2009, Estelle Bar Ness set out to learn all she could about LMS. By educating her doctors and advocating for herself, she gained access to treatments that had never been used in her country—and...
Make a Mindful Meditation Mala Bracelet
A Virtual Workshop with Courtney Jackson Moore November 7, 2020 1pm Pacific / 4pm Eastern Time Cost: Free with a donation of any amount to LMSDR Just email a copy or photo of your donation receipt to 2LMSDR@gmail.com. The link for the workshop will be sent to...
Beyond the Tumors: Palliative Care for Leiomyosarcoma
By Vicki Strong 9/14/20 Do you know the difference between palliative care and hospice? While both offer "comfort care" designed to improve your quality of life, palliative care can be accessed at any time in your cancer journey, including at the point of diagnosis!...
Hard Conversations
By Vicki Strong 8/20/20 As many of us are all too painfully aware, a change in health can happen to any of us and at any age. Whether you are fearful that you may be quickly facing end-of-life issues or your prognosis looks good, it is wise to make important...
Barb Soyka, Leiomyosarcoma Long Term Thriver
Hope Lives! Barb Soyka is getting ready to celebrate the 10th anniversary of her diagnosis with stage IV retroperitoneal LMS! In 2010, Barb learned that she had a football-sized tumor encapsulating her left kidney. She was initially misdiagnosed by no less than...
The Most Resilient People on Earth are People with Cancer
By Sharon Anderson MSW 3/28/20 "The most resilient people on Earth are people with cancer, because they are masters at adjusting to unwanted realities and uncertainty from the moment of diagnosis. People with cancer have looked death in the eye and are still...
Cancer and the Immune System
By Dr. Kirsty McIntyre MBBS, FRACGP, MPM, FRANZCP 3/23/20 A major advance in cancer research over recent decades has been the recognition that a healthy immune system is necessary to both prevent and survive a cancer diagnosis. Whilst some of us have inherited...
Uncharted Waters – What you need to know as a cancer patient during the Covid 19 pandemic
By Vicki Strong 3/21/20 First of all, breathe! As cancer patients and caregivers, this is not totally unfamiliar territory. Most of us have learned a lot of coping skills that serve us well in these uncertain times. We have been here before – canceled plans,...
Kathy Breit, Long Term Leiomyosarcoma Thriver
Kathy’s LMS journey: learning hope, compassion and new normals Kathy Breit’s cancer story is a difficult one, but the current chapter is full of happiness and hope. Kathy’s LMS odyssey began in 2012, when she was 58 years old. While showering, she discovered a...
Jennifer Kelley, Long Term Thriver
“Life can be even better after cancer” by Vicki Behrens 2/20/20 Jennifer Kelley is a true cancer thriver! She has survived breast cancer for 11 years, melanoma for 10 years, LMS for more than 8 years, and uterine adenosarcoma for 2 years, and she is currently NED....
High School Senior, Abbie Vollmer Researches Leiomyosarcoma in Honor of her Mother
Abbie Vollmer is a high school senior. She contacted LMSDR to share that her senior project is to study leiomyosarcoma. We were able to connect her to several esteemed sarcoma researchers who helped guide her and share their resources. We are impressed by her project...
16 Things I Didn’t Know About Cancer
By Melissa Russell 2/5/20 Six months ago my husband John was diagnosed with Leiomyosarcoma. It has taken all of this time for me to get my head around this diagnosis, and I have finally been able to write something about it. Sometimes I write words I need to...
Leiomyosarcoma Research Update by Dr. Hemming
In 2018 and 2019, Leiomyosarcoma Support & Direct Research Foundation (LMSDR) awarded Dr. Mathew Hemming MD PhD of Dana Farber a grant totaling $84,000 for his two-year project: “Exploring Leiomyosarcoma Functional Genomics to Identify Disease Specific...
Leiomyosarcoma Caregiver, Lisa Kessler Griffin
Lisa Kessler Griffin December 7, 2019 I have been a caregiver at several points in my life for the past 36 years. My first care giving experience began when was 23 years old. My infant son, Clint was diagnosed with a rare eye cancer at 8 months of age. As an...
COGNITIVE PROBLEMS AFTER CANCER
A common side effect after a cancer diagnosis is cognitive dysfunction. Even if you have never had chemotherapy, complaints of memory slow-down or loss, and difficulty learning new things are real. After my own leiomyosarcoma journey began in 2002, I realized that I...
Long Term Leiomyosarcoma Thriver, Debie Gurkin
Benign fibroids? YEAH, RIGHT! Debie Gurkin lives in Belleville, Michigan and was diagnosed at age 49 with uLMS. That was over nine years ago. The original diagnosis was benign fibroids, and to that Debie says ,”Yeah, right!” So what happened? Debie’s journey...
Leiomyosarcoma Caregiver, Joel Lugo
By Lisa Lugo 12/1/19 Nowadays it can be challenging just getting up the stairs, never mind doing all the things I used to do! Joel takes on everything, from all the yard work (we have a beautiful, large yard which used to be so lovely to look at, now it is...
Honoring Mike Whitmer, LMS Caregiver
Mike Whitmer, husband and caregiver to Sharee Whitmer, a member of the LMSDR Facebook Support Group, is the winner of our Week #1 Thankful for Caregivers contest. Sharee describes Mike as her soulmate. Many of us met Mike and Sharee at the Sarcoma Exchange in...
What Helps You Conquer Fear?
Fear can let our imagination become a runaway train. A cat becomes a lion. A bump becomes a tumor. A tumor becomes the end. We think the worst. That is fear. Controlling one's thoughts and staying logical are critical. I asked the LMSDR Facebook group members to...
Leiomyosarcoma Long Term Thriver, Mary James-Neher
Oct 28, 2019 Janesville, Wisconsin I was given two months to live, thirteen years ago. It was Sept 2006. Two years prior, I started having symptoms but was misdiagnosed. I have no regrets about that misdiagnosis because I truly believe my story would...
Leiomyosarcoma Long Term Thrivers 2019
Leiomyosarcoma Long Term Thriver Stories originally appeared in the monthly LMSeAlerts newsletters. We have collected them here for you to read. Thank you to the Thrivers who shared their stories to help pass hope forward! If you have an update to these stories email...
Leiomyosarcoma Long Term Thrivers 2018
Leiomyosarcoma Long Term Thriver Stories originally appeared in the monthly LMSeAlerts newsletters. We have collected them here for you to read. Thank you to the Thrivers who shared their stories to help pass hope forward! If you have an update to these stories email...
Leiomyosarcoma Long Term Thrivers 2017
Leiomyosarcoma Long Term Thriver Stories originally appeared in the monthly LMSeAlerts newsletters. We have collected them here for you to read. Thank you to the Thrivers who shared their stories to help pass hope forward! If you have an update to these stories email...
Leiomyosarcoma Long Term Thriver Stories 2016
Leiomyosarcoma Long Term Thriver Stories originally appeared in the monthly LMSeAlerts newsletters. We have collected them here for you to read. Thank you to the Thrivers who shared their stories to help pass hope forward! If you have an update to these stories email...
Leiomyosarcoma Long Term Thriver Stories 2015
Leiomyosarcoma Long Term Thriver Stories originally appeared in the monthly LMSeAlerts newsletters. We have collected them here for you to read. Thank you to the Thrivers who shared their stories to help pass hope forward! If you have an update to these stories email...
SMILE IN OCTOBER for Leiomyosarcoma!
SHARE A SMILE IN OCTOBER! Help us raise money for leiomyosarcoma research by registering and shopping on AMAZON SMILE. Did you know? Since 2015, we have raised over $5,000 by shopping on Amazon Smile. Currently there are 665 individuals who have registered LMSDR as...
Leiomyosarcoma Long Term Thrivers 2013-2014
Leiomyosarcoma Long Term Thriver Stories originally appeared in the monthly LMSeAlerts newsletters. We have collected them here for you to read. Thank you to the Thrivers who shared their stories to help pass hope forward! If you have an update to these stories email...
Long Term Leiomyosarcoma Thriver Stories 2013 -2014
Long Term Leiomyosarcoma Stories originally were published in the 2013-2014 LMSeAlerts newsletters. We have collected them for you to read here. Meet the Thriver: Amy Regenstreif October 2013 Amy Regenstreif has rightfully earned the title, “Advocate.” Amy is a...
Rita Hamilton, Long Term LMS Thriver
Rita Hamilton, "Keep on Truckin" Rita Hamilton was diagnosed with uterine leiomyosarcoma in August 2000, when she was 42 years old. At that time she was told she had 18 months to live. In the 19 years since then, she has learned that doctors cannot predict how...
Along the way – Mourning my Lost Friends
Along the way in my cancer journey since 2002, I have had the privilege of meeting more than a thousand other leiomyosarcoma patients and loved ones, in person and in our LMSDR Facebook Group. Some have been just a name to me. Others, I have followed their stories...
LMS Research Update from Matt Hemming MD, PhD
Oncogenic gene expression programs in leiomyosarcoma Leiomyosarcoma Support and Direct Research Foundation (LMSDR), awarded a $85,000 research grant in 2018, to Dr. Matt Hemming at Dana Farber Cancer Institute to study leiomyosarcoma. Here is his letter sharing...
What is it Like to Go Through Cancer Treatment?
By David Carlson A friend of mine who is battling breast cancer sent me this. I don’t know who wrote it but it is the best and funniest description of going through treatment I have read: What’s it like to go through cancer treatment? It’s something like this: One...
Helms Alee!
By Sharon Anderson 8/4/19 The helmsman of the ship yells, “Helms Alee!” The crew scrambles to change course! We all need a time out – cancer or no cancer – to gather our thoughts, strengthen our spirit and change our course. The word vacation comes from...
There Is Still Life After Leiomyosarcoma!
There is Still Life After LMS! This is a collection of moments and experiences that many of us never thought we’d have – after we were diagnosed with LMS. Maybe you are grieving for your old normal life. Maybe you think this is the end. Rest assured, there is...
Debbie Foley, a Long Term LMS Thriver,
Debbie Foley At age 51 in June 2010, Debbie Foley, another extraordinary sarcoma thriver, was diagnosed with uterine lms. Debbie’s complaint was painful fibroids, and her doctor, Lisa Anderson M.D., recommended a full hysterectomy. No laproscopic surgery. No...
An Antidepressant That May Also Help Leiomyosarcoma?
By Sharon Anderson 4/13/19 The key to finding new targeted drugs for leiomyosarcoma is to know how LMS cells grow uncontrolled. Not only do certain gene mutations drive the growth, but there are gene mutations that limit the body’s own controls on cell growth. This is...
Sarah Salem-Robinson, Advocate Against Morcellation
Sarah’s Interview on Drug Watch: https://www.drugwatch.com/contributors/sarah-salem-robinson/ Sarah Salem-Robinson is a Physician Assistant. As many thousands of women in the last two decades before her, she experienced a harrowing health journey with heavy periods...
Pay It Forward
The simplest way to define “pay it forward” is that when someone does something for you, instead of paying that person back directly, you pass it on to another person instead. When I was first diagnosed with leiomyosarcoma (LMS) in 2002, I received so much help from...
Investing in Our Futures
Back in 2002, when I was diagnosed with leiomyosarcoma (LMS), there was only one treatment available... "AIM," which stood for Adriamycin (doxorubicin), ifosfamide and mesna. It was not effective for the majority of LMS patients. Patients did not live much longer than...
Leiomyosarcoma Research Funded by the LMSDR Foundation
By Sharon Anderson, President of LMSDR Every year, Leiomyosarcoma Support & Direct Research Foundation (LMSDR) grants money for ground breaking LMS specific research. When LMSDR started, in 2006, there were almost no researchers studying leiomyosarcoma (LMS.) Then...
New Sarcoma Trial Available: MGCD516
Phase 1/1b Study of MGCD516 in Patients with Advanced Cancer See Trial Protocol Here Offered in 43 locations! Nikki Angel of the Sarcoma Oncology Center in Santa Monica, California explains how this trial may help leiomyosarcoma patients with the tyrosine kinase (RTK)...
Penn Medicine Announces Slay Sarcoma Research Initiative
Congratulations to the Reed and Noorchashm families and their Slay Sarcoma Foundation supporters! Slay Sarcoma Research Initiative and Abramson Cancer Center – Penn Medicine announced partnership in funding a new uLMS research initiative. Using xenograft models of...
New Sarcoma Trial – CBT1 with Doxorubicin
by Nikki Angel Sarcoma Oncology Center2811 Wilshire Blvd., Suite 414Los Angeles, CA 90403tel. 310.552.9999 The Sarcoma Oncology Center is offering a new trial for leiomyosarcoma. Phase 1 trial of CBT-1 in Combination with Doxorubicin in Patients With Metastatic,...
Holiday Help for Cancer Patients
12/22/18 By Sharon Anderson MSW Holidays create stress for everyone, but for a cancer patient, it can be a very difficult time. Here’s a few suggestions of how to lower the expectations and demands on you so you have more time relax. SIMPLIFY! Buy only one gift per...
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