Vicki Shigley was diagnosed in Dec. 2012 with retroperitoneal (basically behind the stomach lining) Leiomyosarcoma, a rare and aggressive cancer called a soft tissue sarcoma of which Leiomyosarcoma is in the smooth muscles cells. Sarcomas represent 1% of all cancers and Leiomyosarcoma is a sub group of Sarcoma, so you can see why it is so rare. Because of this being rare there is little funding focusing on this cancer. LMS is not curable currently.
Vicki had metastasis to both lungs in 2016 with surgery June and August. Shortly after the surgery more nodules showed up again in both lungs but of this date are stable and below 1cm. In October 2017 she had an MRI of her thoracic spine where cancer had metastasized to the t11-t12 but very small and like the lungs stable for now. In October of 2017 she felt a strange nodule on her left shoulder and biopsy was positive for LMS. The left shoulder tumor was excised Nov. 2017. LMS is best treated with surgery obtaining clear margins. Other treatments of radiation and chemotherapy can also extend life.
In 2013, after the surgery in 2012 and radiation in early 2013 she was feeling so alone as she read more about this cancer and wanted to meet other survivors. Leiomyosarcoma Direct Research had their first retreat in Copper Mountain Colorado in 2013 and for the first time she met with another person, many with LMS from other states and Colorado. She is so thankful for the connection with other LMS “thrivers” through the closed Face Book group and other retreats and for the work Sharon Anderson has achieved as executive director for LMSdr. Original research about LMS gave a low 5-year overall survivability. Vicki will be a 5 year plus on Dec. 10, 2017 and as she says, “still kicking it”. The support and knowledge from LMSdr is a lifeline for her. At these retreats Vicki and her husband met Dr. Matt van de Rijn, a researcher and who spoke to the group about his research in Leiomyosarcoma. His information was an eye-opening experience into a new world and vocabulary. Vicki has informed herself about LMS and is her own best advocate. She feels this knowledge is what is keeping her alive by being aware and informed.
Leiomyosarcoma Direct Research is a public charity and is a 501(c)(3) IRS designated charity and your donation is tax deductible.
Your donation will go for research for this very rare and aggressive cancer. Vicki and her family thank you for your donation and support. You will honor her with your donation.
If you’d like to make a donation to Leiomyosarcoma Support & Direct Research in honor of Vicki, please do it HERE. We will let the family know of donation – even if you don’t see it on your receipt.
About Leiomyosarcoma Support & Direct Research Foundation (LMSDR)
This fund was created out of love, to help others win their battle with leiomyosarcoma by funding LMS specific research. Leiomyosarcoma Support & Direct Research Foundation (LMSDR) raises donations for Leiomyosarcoma research and patient support. We advocate directly with sarcoma researchers to study leiomyosaroma. We offer the largest moderated support group online for leiomysarcoma, where patients and loved ones get the latest LMS news and personal support. The LMSDR’s website offers local support groups, details of what we do, the research we have funded and many resources for the Leiomyosarcoma community. The LMSe Alerts is our monthly newsletter, offering more updated clinical trials, news and community events. The Leiomyosarcoma Lifeline is our new blog, featuring patient stories and our well-known Long Term Thriver stories.
We collaborate with researchers and other organization to reach our mission and vision of finding treatments that will work. We have created the Leiomyosarcoma Tissue Bank for researchers to study our disease, the Leiomyosarcoma Patient Registry to collect data, and ran successful blood collections for study. We have brought patients and loved ones together from all over the world for education and support at our Leiomyosarcoma patient conferences, in Denver, Colorado, San Francisco, California, New York City, New York, and Maui, Hawaii. Please stay in touch with our website for more upcoming events sponsored by Leiomyosarcoma Support & Direct Research Foundation.
Leiomyosarcoma Support & Direct Research is an all volunteer organization. We are proud to have the minimal amount of expenses as possible, to ensure your money goes directly to funding promising research for Leiomyosarcoma specifically. You can volunteer, put on fundraisers, promote LMS awareness and ask your employer for matched funds. Please consider helping us Work, not wish, for treatments that will work for us. We have been a 501(C) (3) since 2006 and a tax-free charity.