Tag Archives: uterine sarcoma

Discover 3 Kick-butt Keys to Thriving Despite Cancer

Discover 3 kick-butt keys to thriving despite cancer. Important attitudes, behaviors, and major life choices are explored in this episode of Breast Friends Cancer Support Radio network. Listen for tips on managing chemotherapy, the difference between being healed and being cured, reducing pain levels, and getting out of the hospital early. Find genuine hope and practical options to improve outcomes.
https://www.voiceamerica.com/episode/97339/3-keys-to-thriving-after-cancer

 

Sharing my Story with the Northwest Sarcoma Foundation

Click here for my brief story

The Northwest Sarcoma Foundation provides hope, education, and support to sarcoma patients and their families in the Pacific Northwest while investing in research to improve cure rates for sarcomas.
Its CARE values are
Compassion — Providing comfort through a sympathetic awareness.
Advocacy — Promoting accurate diagnosis, research, and treatment options through  investment in research
Responsibility — Providing timely, accurate information and reliable resources.
Education — Providing educational materials for patients and families about this disease.
Its vision is better treatments for sarcoma patients and increased cure rates.

Psychosocial Support in Cancer Care

Psychosocial support in cancer care was addressed briefly Oct. 8 at the National Leiomyosarcoma Foundation patient symposium in St. Louis, Mo.  This was one of several cancer treatment topics that I have been reporting about.

Dr. Yasmin Asvat, clinical psychologist at the Siteman Cancer Center, said, “What is a healthy emotional response to a diagnosis? All emotional responses are valid and appropriate. They’re human responses.”

Initial emotions can include sadness, anger, shock, disbelief, denial, and for a few, acceptance.

“Our bodies are looking for balance to be restored,” she said. “If we are not getting to adjustment and acceptance, how can we live well through this journey?”

Thirty percent of patients experience chronic distress after a diagnosis. “To what degree is the distress interfering with the ability to cope effectively?”

Normal feelings like sadness, fear, and vulnerability can become disabling feelings like depression and anxiety.

“Distress can be experienced throughout the cancer care trajectory,” she said.

Dr. Asvat sees her role as partner in balancing patients’ goals with fears. She tries to provide physical interventions and strategies for fatigue, pain, insomnia, and developing a healthy lifestyle.

Advances in LeioMyoSarcoma Surgery

Advances in LeioMmyoSarcoma surgery was addressed briefly Oct. 8 at the National Leiomyosarcoma Foundation patient symposium in St. Louis, Mo.  This was one of several cancer treatment topics that I am reporting about during the coming weeks.

Jeffrey Moley, associate director of the Siteman Cancer Center, said LMS can occur anywhere in the body and has a 50 percent mortality rate. It most commonly is found in the extremities of the body. Nineteen percent of sarcomas are LMS. High-grade LMS has a greater than 50 percent chance of metastasizing; low-grade has a less than 15 percent chance.

Sarcomas are the only cancers that are graded.

During surgery, the doctors always try to get a negative margin. To avoid amputation, one good option is to do limb-sparing surgery followed by radiation. This decreases the chance of a local recurrence by 30 percent.

MRIs and CT scans give pretty much the same information to the doctors.

The definitive treatment is complete surgical resection.

For abdominal and retroperitoneal tumors, sometimes repeat operations can be very effective, especially for low-grade sarcomas.

Surgical Management of Uterine Smooth-muscle Tumors

Surgical management of uterine smooth-muscle tumors was addressed briefly Oct. 8 at the National Leiomyosarcoma Foundation patient symposium in St. Louis, Mo.  This was one of several cancer treatment topics that I am reporting about during the coming weeks.

Matthew Anderson, associate professor and director of research (gynecology) at Baylor University, said “Uterine leiomyosarcoma is a unique disease.” As many as 80 percent of women are impacted by a uterine smooth muscle tumor. About 200,000 hysterectomies are performed every year, which costs $3 to $5 billion.

“The only way to know if it’s malignant is to surgically remove it,” he said, because there are no diagnostic markers and no blood tests that can be used to determine malignancy.

Leiomyomas can arise in unusual locations. If they are morcellated, they can create other problems down the road. These myomas tend to respond to hormonal therapy.

They generally don’t tend to respond to chemotherapy or radiation.

About 70 percent of uterine LMS are discovered as isolated uterine masses. Recurrence rates are 40 to 70 percent.

With surgical debulking, doctors can increase progression-free survival from 6.8 months to 14.2 months.

Resection of pulmonary metastases can improve disease-free survival by as long as 24 months. This can include extensive resections while preserving good functional lung status.

Surgery by itself is not the answer. Unseen cells can come back. Ultimately patients have to rely on chemotherapy.

On April 17, 2014, the US FDA issued a safety communication regarding the use of power morcellation for performing hysterectomies or myomectomies. This led manufacturers to withdraw the devices and hospitals generally are not using this method.

Impact: 99 percent of the time, the uterine tumor is not cancer. Yet demand from patients for minimally invasive hysterectomies continues.

There is one case of ULMS in every 1,960 cases.

Short-term, the risk of ULMS should be discussed thoroughly with each patient.

The long-term goal is to develop a diagnostic test that can be used to determine malignancy.

Beyond Immunotherapy: Metabolic Treatment for Cancer a Possible Future Option

Cancer metabolism was addressed briefly Oct. 8 at the National Leiomyosarcoma Foundation patient symposium in St. Louis, Mo.  This was one of several cancer treatment topics that I am reporting about during the coming weeks.

Dr. Brian Van Tine, sarcoma program director at the Siteman Cancer Center in St. Louis, spoke on “Understanding Your Cancer’s Metabolism.”

Some cancer therapies currently in use involve attempts to change metabolism through diet to alter the course of cancer.

Van Tine, however, said, “There is little you can do with your diet to alter the course of your tumor outcome. Metabolism is tricky. It’s like a wonderfully orchestrated watch.”

If you try to put a halt in the system, the body will try to go another way to accomplish the same task, he said.

When cancer cells are born, they have a different metabolism from the rest of the body. The purpose of cancer is to grow. In the metabolic process, nine out of ten cancer patients don’t have a urea cycle (https://www.ncbi.nlm.nih.gov/books/NBK27982/ )  and don’t express ASS1 (https://www.ncbi.nlm.nih.gov/gene/445) in their tumors.

These two conditions make Leiomyosarcoma patients prime candidates for a metabolic-based therapy. Dr. Van Tine is studying possible future treatments for cancer / sarcoma patients using metabolic therapy. Click here for an explanation of his research.

Clinical Trials and Leiomyosarcoma

nlmsf-logo

Clinical trials for leiomyosarcoma (LMS) were discussed briefly Oct. 8 at the National Leiomyosarcoma Foundation patient symposium in St. Louis, Mo.  This was one of several cancer treatment topics that I will be reporting about during the coming weeks.

Dr. Peter Oppeli, assistant professor of medicine at the Washington University School of Medicine, said LMS is one of the more common types of soft-tissue sarcoma. It is found in smooth muscle cells that naturally occur in the intestines, blood vessels, and the uterus, all of which are in charge of involuntary action in the body. For pregnant women, these muscles play a key role in labor and delivery.

LMS can originate anywhere smooth muscles are found. In almost half of all new LMS diagnoses, it is found in the uterus. It also occurs in the body’s extremities and in the abdominal cavity, especially in the back part of the abdomen.

There are about 2,000 new diagnoses each year. Compare that to another type of cancer, such as colon, which has about 135,000 new diagnoses each year.

Because LMS is rare, it is more challenging to come up with treatments. Any new drug for a rare disease is cause for a lot of excitement. Trabectadine, for example, was approved by the FDA in October 2015.

New drugs are approved when they show proven benefit from a clinical trial.

Clinical trials are research studies for understanding cancer and how to treat it. Trials can look at new drugs, combinations of drugs, ways to ease side effects, new forms of radiation, and new surgical methods.

A Phase 1 clinical trial is for finding the right dose and finding out the treatment’s side effects.

A Phase 2 trial involves larger groups of patients. In a Phase 3 trial, large number of patients are treated to confirm effectiveness.

The vast majority of clinical trials do not have a placebo-only option. Placebos usually are combined with standard effective treatment, so every patient gets what is determined to be the best treatment.

What is research protocol? It is the rule book for each clinical trial. Each trial will have a unique/specific protocol that describes inclusion and exclusion criteria for potential treatment.

Is a clinical trial going to help a particular patient? “We hope so, but cannot say with certainty that enrolling is going to be beneficial,” Dr. Oppeli said.

Almost every standard treatment has first been proven effective in clinical trials.

After his talk there was a 10-minute time period for questions.

A lot of clinical trials have interim times to see if a trial is helpful or not. Then if not shown effective, the trial is stopped. If the results look promising, the trial continues.

Thriver Soup Ingredient:

For more information on clinical trials, go to www.cancer.net for a large video library.

Sometimes We Need to Sweat the Small Stuff

I am responsible for his death. I never paid any attention to Black Gold’s lameness; he always black-gold-copyseemed to work out of it.

H. Webb, trainer, in the fiction book Black Gold

 

A hairline crack developed in the hoof wall of the Thoroughbred Black Gold as he raced through the spring of his three-year-old season. Despite the soreness this created, he won the 1924 Kentucky Derby. His trainer kept pushing the stallion anyway, and the jockey, Jaydee Mooney, stopped riding the lame horse in protest. The injury was left untreated and worsened. Eventually the brave racehorse broke that limb during a race, finishing on three legs. The beloved racehorse was put down.

I read his story, by Marguerite Henry, when I was in grade school. While very sad, I loved the tale. This year I found the same hardback book for $1 and brought it home to reread.

The parallels with my life were too obvious. I didn’t give much heed to the “benign” fibroid in my gut that grew unreasonably large. Two good friends found it frightening and urged me to get to a doctor as soon as possible.

By this time I was out of town. Through a long process, I finally decided to go to the emergency room. A small problem, like Black Gold’s hoof crack, left unattended, became deadly–a stage 4 uterine sarcoma.

It’s easy in our culture, with our “grin-and-bear-it,” “no pain, no gain” athletic mentality, to ignore our bodies’ warning signs. Yet our bodies give these signals because something is out of balance and needs our attention. Small problems, if attended to quickly, can stay small and be fixed, or at least controlled. Left on their own, they can become insurmountable issues.

Thriver Soup Ingredient

One fallout from a cancer diagnosis is that every headache, skin bump, or new pain brings up anxiety around the idea that it could be cancerous. If the symptom persists, it might be a good idea to get it checked by a doctor.

Sources:

https://en.wikipedia.org/wiki/File:Hof9.gif

Marguerite Henry, (Author), Wesley Dennis (Illustrator), Black Gold (Rand McNally, 1975)

It’s Official: 5 Years Clean

Purify me with hyssop, and I shall be clean; Wash me, and I shall be whiter than snow.

Photo by Judy Peace
Photo by Judy Peace

Psalm 51:7, New American Standard Bible

Hyssop, as used in this verse, probably refers to herbs, such as oregano or thyme, used by the early Israelites to purify those with skin disorders and as part of cleansing rituals.

My disorder appears to be purified, cleansed, washed away. Today my nurse practitioner, Michele, confirmed I am now five years clean, five years free of evidence of disease, and five years clear of all medical treatment.

I am THRILLED!

Filled with gratitude and joy, I went to the nearby Cathedral Basilica of the Assumption in Covington, Ky., to light a ritual candle and give thanks. Mother Mary holds a reverential place in this hallowed hall, and I feel devotion toward her for many reasons. I entered, wide-eyed at the majesty of dozens of intricately painted stained-glass windows. The stunning primary window, one of the largest in the world, depicts the crowning of Mary in heaven.

After circling and ogling with my friend Judy, I went to Mary’s alcove near the front of the quiet cathedral and saw, to my great delight, real sunflowers on her altar. Sunflowers are the symbol for sarcomas, which are cancers of the connective tissues. I had been diagnosed seven years ago with a sarcoma. The flowers provided the perfect symbol for completing the experience.

I lit a candle, kneeled on the bench, said a Hail Mary, and expressed my deep gratitude for five clear years. “Thank You for purifying me; I AM clean.”

Thriver Soup Ingredient:

If you are longing for a clean bill of health, the above verse can be modified as an affirmation of faith in a positive outcome and as a prayer request of the Divine that can be repeated throughout the day: When you take your shower, you can say, “Purify my body with this shower, and I shall be clean…” When you drink your green smoothie, you can say, “Purify my cells with these greens, and I shall be clean…” When you are receiving chemotherapy, you can say, “Purify my organs with these medicines, and I shall be clean…”

Source:

https://en.wikipedia.org/wiki/Hyssopus_officinalis

Thriver Soup Thursday–She’s not The Statue of Liberty

Enlightenment is man’s emergence from his self-incurred immaturity.
Immanuel Kant (1724–1804), in his essay, “What is Enlightenment?”

statue crown webThe philosopher Immanuel Kant gave this answer to the question “What is Enlightenment?” in an essay published during 1784, nearly 100 years before the Statue of Liberty was built.

But “Statue of Liberty” isn’t the true name of the giant green goddess-like figure overlooking New York City’s harbor area. She was officially named the statue of “Liberty Enlightening the World.” I realized during a recent trip that to call her simply “the Statue of Liberty” is to miss the point of her name. The liberty she represents has a defined purpose—to bring enlightenment the world.

The copper colossus, designed by French sculptor Frédéric Bartholdi, was intended as a 100-year birthday present from the French to the people of the United States. Construction of the statue and the pedestal was completed in 1886.

Originally the statue stood for shared political freedom between the United States and France. Poet Emma Lazarus expanded this view to include hope against external sources of tyranny:

… Here at our sea-washed, sunset gates shall stand
A mighty woman with a torch, whose flame
Is the imprisoned lightning, and her name
Mother of Exiles. … “Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!”

Yet “liberty” and “enlightenment” mean so much more.

Kant had put the word enlightenment into a personal context a century earlier. “Enlightenment is man’s emergence from his self-incurred immaturity.” Kant’s motto of enlightenment was “Sapere aude” – Dare to be wise.

As humans take more responsibility for their personal lives, they find more freedom within themselves to act from a place of authenticity. This brings more awareness into their lives, which in turn spreads more light to others. When enough people experience this internal freedom, then perhaps humanity will reach a critical mass in consciousness and the whole world will experience more freedom, maturity, and wisdom.

It must start with each of us as individuals. Do I dare to develop the courage to emerge from my self-incurred, self-limiting immaturity? Do I dare to be wise?

I wasn’t ready to tap into my deeper levels of courage until my cancer journey forced me to dare to emerge from my self-incurred immaturity. Right after the sarcoma diagnosis in 2009, when I was in New York City, I apparently was ill-prepared for the privilege of visiting Liberty Enlightening the World. Unbeknownst to me, I first needed to grow up and heal my life. I missed the last ferry to the island that year, and put a visit to the green queen on my bucket list.

When I visited her this summer, five years into Radical Remission, I was ready to receive the full impact of her message of internal liberty and the resulting enlightenment that can be shared with the world.

I even ascended the double-helix passage up to the crown for an in-spirational view from on high.

And so I share Liberty Enlightening the World’s message: Dare to break out of self-incurred immaturity. Dare to be wise. Dare to lift your torch beside your own golden door and open it to share your brilliant light with the world.

Thriver Soup Ingredient

If you want to climb to the crown of the statue, purchase your tickets several months in advance. Only 500 people among the thousands who mill around the pedestal are allowed up into the crown each day.

Sources

https://en.wikipedia.org/wiki/Answering_the_Question:_What_is_Enlightenment%3F

http://fiveminutehistory.com/liberty-enlightening-the-world/