Welcome to Zenia E. Dacio-Mesina's LMSDR Fundraising Page!
Finding out I had cancer was hard enough, but to find out that I had a rare cancer was even tougher. Rare cancer means less research and support services. According to NIH, 6 in 1 million people are diagnosed with leiomyosarcoma (LMS) a year (https://www.cancer.gov/pediatric-adult-rare-tumor/rare-tumors/rare-soft-tissue-tumors/leiomyosarcoma).
Thankfully, I found the Leiomyosarcoma Support and Direct Research Foundation (LMSDR, https://www.lmsdr.org/). They run an excellently moderated private Facebook group for patients with LMS and their caregivers. Through them, I find out how to deal with side effects, possible treatment options, answers to various questions, or a place to share how I'm doing. We support one another and mourn with each other. They also provide hope - there are many in the group that are considered long-term thrivers. These are people who've survived more than seven years with LMS and there's so many of them living much longer than seven years! LMSDR also raises awareness about LMS and funds research. There are more treatment options now than before thanks to LMSDR.
Please join me if you are able and support LMSDR with a donation so they can continue to fund research and provide support to the LMS community.
My LMS Journey
June 7, 2022 is the day that my world turned upside down and I was diagnosed with stage 4 uterine leiomyosarcoma. That day, I had a hysterectomy and the frozen section of my grapefruit-sized tumor in my uterus confirmed what a previous CT scan and PET scan alluded to. There were too many lung nodules to do surgery, so I started chemotherapy a month later in July. I started with gemzar/taxotere (gem/tax for short) but after three cycles, my doctor switched me to doxirubicin due to worsening neuropathy. My neuropathy got better, but after six treatments of doxirubicin, my heart function became weaker, so my doctor switched me back to gem/tax.
In the four years since then, my journey has included:
- two surgeries - Total Abdominal Hysterectomy with Bilateral Salpingo-Oophorectomy (TAH-BSO) and right lung wedge resection via VATS (Video-Assisted Thoracoscopic Surgery)
- eight hospital stays - for the two surgeries plus various side effects to treatment: a DVT (blood clot), low white blood count which led to an infection, pleural effusion, and more pleural effusion this time caused by bleeding lung metastases, pneumonia, and RSV.
- 63 chemotherapy infusions - gemzar / taxotere and doxirubicin
- 5 SBRT (Stereotactic Body Radiation Therapy) sessions
- 3 cycles of oral targeted therapy - Lynparza / Temodar
- 2 immunotherapy infusions - Keytruda
- 2 hormone blockers - letrozole and exemestane
- 15 radiation treatments
- And counting! I'm still fighting pesky lung mets that keep growing back!
Nothing could have prepared me for the roller coaster I've been on these past few years. When I was first diagnosed, I was filled with gloom and doom over my diagnosis, wondering how much time I had left. Then over time, it changed to being full of gratitude, hope, and a greater appreciation for life. I'm so grateful for my medical team at Columbia Presbyterian, conveniently located just 15 minutes from where I live. I'm also so grateful for family, friends, and nonprofits like LMSDR to provide such much-needed support to those of us with rare cancers. To be connected with others who get what I'm going through is such a blessing and an important part of my healing journey.
Please help me and my fellow LMS brothers and sisters on this difficult journey by donating to LMSDR! Thank you!
When I started this fundraising page last year, I set my initial fundraising goal as $300 to mark three years of living with this disease. But thanks to the generosity of family and friends, I've already surpassed that deadline! So now, I'm going to increase the challenge - who can help me get to my new target fundraising goal of $4,000 to celebrate my four years of living with this disease? Research for rare diseases like LMS is needed now more than ever due to federal budget cuts to (my and my fellow LMSers') life-saving research.
