Disclaimer: One case isn’t the whole and when you have a certain type of cancer each case is individualized and what works for one person may not work for another depending on and the grade of your cancer. However, as I learn more about this type of aggressive cancer. I learn Natural Cancer should be by passed in favor of Immunotherapy.
Diagnosed with leiomyosarcoma – a rare type of soft tissue sarcoma – Nancy McGuire
is enjoying life once again after treatment with trabectedin (Yondelis), a newly approved chemotherapeutic. Learn how cancer research is improving the lives of patients like Nancy at www.AACR.org/CancerProgressReport.
AGE: 70 ~AT THE TIME
GREAT FALLS, VIRGINIA
After I was diagnosed with leiomyosarcoma, it was very hard to find a medical oncologist who specializes in treating sarcoma. Yondelis US // Nancy McGuire – AACR Foundation // Surviving Leiomyosarcoma Thanks to Research.
Nancy McGuire was devastated after her diagnosis but, thanks to a new chemotherapeutic, is enjoying life once again. After several days of pain in her lower pelvic area in December 2009, Nancy McGuire went to her primary care physician to get checked out.
Her doctor ordered several scans for the very next day, and just 17 days later, Nancy underwent surgery, not knowing exactly what the problem was. The surgery revealed
that Nancy had leiomyosarcoma, a rare type of cancer.
“It was devastating. I couldn’t do anything, so I came home from the hospital and stared out the window,” said Nancy, a retiree from Great Falls, Virginia, who is now 70 years old. “It took me quite a while to get a grip on the fact that this was a terrible disease I had.”
Following the advice of her surgeon, Nancy went to a local radiologist for radiation therapy. Nancy asked the physician how many leiomyosarcoma patients she saw each year. “She said maybe one,” Nancy recalled. “So I knew I was in deep trouble and
I had to find somebody who was familiar with my disease.”
Nancy’s daughter, a physician in Philadelphia, told her parents not to worry, that she would find a physician who was an expert at treating her disease, a form of soft tissue sarcoma. After Nancy’s daughter completed her research, Nancy visited an oncologist experienced in the treatment of sarcomas such as hers.
“It was the first time I felt optimistic about my future since my diagnosis,” Nancy said.
Every three months, she would travel to Philadelphia for appointments.
Over the next six years, she underwent many treatments, including surgery for lung nodules, microwave ablation of her liver, chemoembolization, and various chemotherapy regimens to keep the cancer at bay.
Ultimately, Nancy’s oncologist suggested a clinical trial for an investigational chemotherapeutic for soft tissue sarcomas including leiomyosarcoma. Nancy, her husband, and daughter considered her treatment options and decided to enroll
in the trial of trabectedin YONDELIS®
Sarcoma-Centers-List-by-state.pdf (sarcomaalliance.org)
Before she even had the chance to enroll in the trial, trabectedin received FDA approval.
“We were very excited that I would be able to take this drug after it was FDA approved,” Nancy said.
“After three treatments of Yondelis, a CT scan showed significant improvement.
All the lesions – and I don’t even know how many there were – were significantly reduced.”
Nancy continued to receive treatments and her lesions continued to shrink and, in fact, some completely went away. After a recent scan that showed continued improvement, Nancy’s physician decided to give her a break from the treatments and reevaluate her periodically to determine when best to restart the trabectedin.
“I feel wonderful emotionally and physically, it’s really good,” Nancy said as she prepared for a month-long vacation in Maine. “I have learned to appreciate a lot of things in life that I never really gave enough attention to before.”
Her experience with cancer has made her stop and take stock.
“It gives you more of an appreciation of life and you look at everything differently,”
she explained. “When your mortality is threatened, you change.”
For Nancy, doing her own cancer research was vital.
“The goal of a cancer patient is to stay alive long enough to get treatment,” she notes,
“and the only way that is going to happen is with further research and funding to support
that research.”
Recapping My Story: Eventually, my daughter found someone at the University of Pennsylvania, which is close to her home. He has guided me through numerous treatments over the past 6 – years, including, most recently, a new chemotherapy called trabectedin (Yondelis). It has worked so well that I’ve been given a vacation from treatment.
For now, I feel wonderful, emotionally and physically.
Life is good.
In December 2009, just after a few days of having pain in my lower pelvic area
that wouldn’t go away, I went to my primary care physician who ordered a CT scan
and MRI for that very day. The tests showed a mass of some description in my lower
pelvic area, so I had surgery 17 days later, not knowing exactly what it was.
When I came out of surgery, the doctors had already told my husband and family
that I had cancer and that pathology would determine what type. My diagnosis was leiomyosarcoma. I was devastated. I couldn’t do anything. After I came home from the hospital, all I could do was stare out the window. I was convinced that I would die within months.
My husband, children, sister, and church friends
were a huge support, and I was eventually able to come to terms with my diagnosis.
After the surgery, I saw a local radiologist and had 28 radiation treatments. When she told me that she saw about one person a year who had leiomyosarcoma, I realized how hard it would be to find an expert in treating this disease in my area. My daughter, who lives in the suburbs of Philadelphia, found a sarcoma specialist at the University of Pennsylvania, Dr. Arthur Staddon.The first time I saw him, he told me the disease was not curable but that it was certainly treatable.
It was the first time I had felt optimistic about my future since my diagnosis.
Over the years, I have received many different treatments. Initially, I had CT scans every
3 months, and Dr. Staddon monitored the disease. After about a year, tumors in my liver appeared, and I had a course of chemotherapy, gemcitabine (Gemzar), and docetaxel (Taxotere), and then surgery to remove tumors from my liver, some of which had been killed as a result of the chemotherapy.
These treatments were followed by another period of monitoring my disease with CT scans, which eventually showed further growth of tumors in my left lung. I started a course of chemotherapy with doxorubicin (Adriamycin). Following that treatment, I had surgery. After a year or so, I had another major lung surgery to remove numerous tumors in my right lung. Four months later, I had cryoablation, microwave ablation, and chemoembolization to destroy tumors in my liver.
In January 2016, I started taking trabectedin, right after it had been approved by the FDA. After just three treatments, a CT scan showed there were no new tumors, and the existing tumors had shrunk. Three more treatments later, the scan revealed more significant improvement, including showing that some tumors had decreased in size even further. Because my most recent CT scan indicated additional improvement, Dr. Staddon recommended I stop taking trabectedin for a while.
Nancy had another scan in September [2016].
Depending on what that shows, we will make a decision about whether to restart treatment with trabectedin or continue without treatment. One great thing about the trabectedin treatment is that I was able to receive the 24-hour infusion at my daughter’s home, rather than receiving it in the hospital. It is so much more pleasant to go through the chemotherapy infusion in a familiar environment with my family around me.
It helped me keep a positive attitude, which makes a big difference to me.
I am really grateful for all the treatments that have kept me alive for the past 6 – years. The goal of a patient with cancer is to live long enough to be around when the next new drug is developed. The only way that is going to happen is with further research and the funding that supports it.
Nancy McGuire was devastated after her leiomyosarcoma diagnosis but, thanks to a new chemotherapeutic, is enjoying life once again. Read her survivor story here: Leiomyosarcoma and Research | AACR Cancer Survivor Stories
Video | Facebook | View all Cancer Progress Report 2016 Survivors
BONUS INFORMATION: Dr Robert Nagourney recommends which
type of chemo combinations for Leiomyosarcoma – Search (bing.com)
We perform Functional Profiling, a laboratory technique that measures
how cancer cells respond when exposed to a variety of drugs and drug combinations.
Functional Profiling is more powerful than genomic testing that most centers offer.
This approach reduces the guesswork from drug selection to find the most effective,
least toxic options. Results only take 7 days.
You and your doctor can then use this information to guide your treatment.
Functional Profiling for Cancer Diagnosis (nagourneycancerinstitute.com)
Leiomyosarcoma: Immunotherapy Clinical Trials –
Bartosz Chmielowski, MD | UCLA Sarcoma Program (youtube.com)
Researching leiomyosarcoma?
Here’s what you need to know about this rare form of cancer. (youtube.com)
Thriving with and healing from incurable uterine leiomyosarcoma cancer (youtube.com)
Dr Suzanne George Leiomyosarcoma PD-1 Inhibitor Dana Farber – Search Videos.
Dr. Breelyn Wilky, leiomyosarcoma and immunotherapy – Search Videos (bing.com)
Together Facing Leiomyosarcoma | Fox Chase Cancer Center – Philadelphia PA
How I Got Sarcoma – Brandie | Stage 4 Leiomyosarcoma | The Patient Story.
Words of Wisdom From Leiomyosarcoma Survivors | LMSDR Foundation
Search Results for Leiomyosarcoma | Cancer Quick Facts (solitarius.org)
Having Faith Conquers My Fears | Cancer Quick Facts (solitarius.org)
Alan’s Story | Leiomyosarcoma Survivor (sarcomahelp.org)
Home Page – Leiomyoarcoma.info (leiomyosarcoma.info)
https://www.facebook.com/NationalLMSFoundation
Medicare Tips by a LMS survivor| LMSDR Blog
Leiomyosarcoma Survivor (lmsdr.org)
My Commitment is Slaying the Dragon One Case at A Time!!!