Tag Archives: uterine sarcoma

Clinical Trials and Leiomyosarcoma

Conventional Companions, Conventional Methods, Resources, , , , , ,

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

Conventional Methods, , , , ,

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

Congruent Care, Conventional Methods, Events, , , ,

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

Conventional Companions, Mending the Mind, , , , , , , , ,

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/

Thriver Soup Thursday: Go Ahead–Walk on Water

Mapping the Emotions, Mending the Mind, , , , ,

So Peter went down from the boat and walked on the water, to come to Jesus.
Matthew 14:29, Christian Bible

peter jesus walking water copyOne night Jesus strides on the surface of a lake toward the boat containing his disciples. One of the passengers, Peter, also wants to walk on the water. For a short time Peter has the faith to move across the choppy surface. He steps completely outside his comfort zone, completely outside his way of perceiving the world, and does something extraordinary. He is truly alive for that brief moment.
I want to fully live my life, which is a longing that springs from years of deadly uterine cancer treatments and threats of hospice. This attitude has helped me face down many things I previously had feared, and to try new experiences my former self would have done anything to avoid.
Prior to 2009, I would never have considered driving in downtown Manhattan, New York. Especially during rush hour.
Well, in June I chose to drive through Manhattan to get to Long Island. After getting lost and rerouted, guess what time I pulled onto the Big Apple? 4 p.m. Just in time for rushing waves of traffic.
Ahead of me there was not a single accident on my route to the Queens–Midtown Tunnel. There were two.
My sister suggested I take a Zen approach and simply allow. So I did, settling into the fact it could take hours to traverse a handful of city blocks. Yet I also decided I was going to be something new, something different, something I had never tried before. I chose to be a bad-as_ behind the wheel.
My brother-in-law had demonstrated how to drive in Manhattan when he helped me get around for my visit to Memorial Sloan-Kettering Cancer Center during 2009. Be pushy. Honk plenty. Don’t give any room. So I picked up his procedures.
I’d already blared my horn for several minutes to get my sister’s attention so she could find me sitting in a traffic lane. I didn’t budge out of anyone’s line of driving until she was safely buckled in next to me.
At one intersection I crossed only partway and sat in a traffic lane, blocking the perpendicular flow. A man in a big black SUV in an oncoming turning lane honked at me, trying to inch his way in front of my little gold Prius. I crept forward. He yelled at me through his open window and tried again to edge me out. As I was able, I moved forward a little more. This scene continued for several heated minutes.
Finally he gave up. He called me an as_-hole (worse than bad-as_), pulled back and passed behind me. “Oh, Ohio! No wonder!”
I chuckled. I had been enough of a bad-as_ to rouse swearing in another driver. I had stood up to a big bad truck with a driver who might well have rammed my little car. I had played with a Big Apple Boy and hadn’t let him cow me.
Like Peter, I followed someone’s example of living life more fully, and moved completely out of my comfort zone. I faced my fear. And I didn’t sink.
Buoyed by my little personal triumph, I trickled my car forward, eventually got through the tunnel, and made my way to our accommodations.
I had lived fully in those moments. I have no desire to repeat them, yet I have added fresh, new experiences to this adventure called life.
Thriver Soup Ingredient:
Is there something you’re afraid of trying, yet know you would be glad you did? Don’t focus on the fear. Focus on the end result—the feeling of satisfaction of having faced the fear and triumphed. I see this as a way of walking on water ourselves.
Sources:
Lamsa, George M. Holy Bible: From the Ancient Eastern Text: George M. Lamsa’s Translation From the Aramaic of the Peshitta. Harper & Row, May 8, 1985.
https://commons.wikimedia.org/wiki/File%3AMielno_witraz_Piotr_chodzi_po_jeziorze.JPG

Thriver Soup Thursday–Save Lives by Raising Awareness

About, Events, It Takes a Village, , ,

sarcoma ribbon copyWe must recognize that the suffering of one person or one nation is the suffering of humanity. That the happiness of one person or nation is the happiness of humanity.

The Dalai Lama

Some diseases receive enormous amounts of media attention. Others are sidelined or not even recognized by most people. I had never heard the word “sarcoma” when suddenly I was thrust into the world of a terminal diagnosis with a few months to live.

What if I had known that my symptoms indicated severe danger, when I thought I was just having perimenopausal symptoms? How many lives can be saved by raising awareness so others can avoid the devastation I was fortunate enough to have lived through?

I had an incredibly rare sarcoma—and only one in 100 cancer diagnoses is for sarcoma, which is cancer of the connective tissues. The Sarcoma Alliance and Sarcoma Foundation of America want to raise awareness about this disease to help others recognize it and get treatment fast to save lives.

These foundations are asking the White House to name July as Sarcoma Awareness Month. At least 100,000 petition signatures are required by July 29, 2016 for the White House to consider this initiative.

Please sign the petition and share it with others.

Alongside this petition is a movement to name July 15 as LMS Awareness Day. LMS is short for leiomyosarcoma, a rare and deadly cancer. Ask your state legislators to pass resolutions similar to one passed in Michigan (email me and I’ll send the sample to you). Then ask your federal legislators to support this at the federal level.

The suffering of each individual with a rare disease does affect us all at some level. Advocate for others, and they will probably advocate for you as well.

Thriver Soup Ingredient

Here is a link to contact information when advocating to your elected officials: https://www.usa.gov/elected-officials

Sources:

www.ineedmotivation.com/blog/2008/04/20-wise-quotes-from-the-dalai-lama/

http://www.shutterstock.com/pic.mhtml?utm_campaign=Bobek%20Ltd&utm_source=39150&utm_medium=Affiliate&tpl=39150-42119&id=163453907&irgwc=1

Community Press shares Thriver Soup’s message of hope and healing

About, Complementary Therapies, Congruent Care, Conventional Methods, , , , , ,

“There were times when Heidi Bright prepared to die after being diagnosed with a terminal cancer in July 2009.

“Today Bright delivers a message of hope and healing through her book ‘Thriver Soup’ and speaking to groups. This is the third traditionally published book by the Milford author.”

Please read more at

http://www.cincinnati.com/story/news/local/milford/2016/05/17/milford-womans-book-shares-tips-surviving-cancer/84500320/

A Return to Exercise

Complementary Therapies, Minding the Body, , , , ,

… (Krishna) drove that best of chariots to a point between the two armies, in front of Bhishma, Drona, and all the rulers of the earth, and then said: “See, Partha (Arjuna), this gathering of all the Kurus!”

The Bhagavad Gita, 1:24-25

 

The Hindu god Krishna drove the best of chariots into battle. The chariot can be a metaphor for one’s body. If one’s chariot, or body, is not in the best condition, it can seriously hamper every aspect of one’s life.

I had let my chariot lose some of its fitness recently. My exercise life had succumbed to the excuses of grief after losing my son and the move into my new home. Later I listened to my guided visualization CD, “A Conversation with Dis-ease,” and received the message that it was time to let go of regularly walking for exercise due to a lifetime of issues with my toe joints.

Yes, they were excuses. My psychotherapist called me on it, then encouraged me, once again, to exercise regularly—preferably 150 minutes per week. I was only doing about 60. Time to ramp it up.

choco truffle webAfter I got home, I felt nudged to get my exercise for the day by walking to a nearby grocery store to pick up more onions. While in the store, I took a look at the clearance shelves in the back. I was shocked to find my all-time favorite chocolate-hazelnut truffles there at one third the usual price—expensive chocolates I had only ever seen in two other distant stores in town.

Was that nudge from my son to make sure I had these special Italian chocolates for celebrating Valentine’s Day? I’d like to think so.

I took home two bags of the sweet treats.

What a wonderful gift for following through and doing my part to get my chariot back in shape. Just in time to enjoy some luscious truffles for Valentine’s Day.

 

Thriver Soup Ingredient:

Exercise is important for numerous reasons. A common recommendation is 30 minutes of exercise five times each week. Some people use pedometers or download exercise apps on their phones. Some tips for getting started include parking at the far ends of parking lots, taking stairs if and when you can, or simply tensing and loosing muscles while lying in bed if that is what you can do.

 

What is your favorite form of exercise?

What is your favorite kind of chocolate?

Special Delivery

Congruent Care, Night of Mourning, , , , , , , , ,

Give thanks in all circumstances…

1 Thessalonians 5:18, Christian Bible, New International Version

 

A large package appeared on my front porch a week before Christmas. I hadn’t ordered anything, and didn’t expect any gifts from anyone.

lville stoneware web.jpgThe label included an unknown name above my address. Hmmm.

I called the delivery company, the former homeowners, the return address phone number. After two hours on and off the phone, the originating company representative told me the package was mine.

Excited, I cut through the tape and pulled out a large red stoneware container holding potpourri. It featured an embossed fleur-de-lis.

My son Tristan’s favorite color was red. Fleur-de-lis is French for the lily flower, which is used to symbolize resurrection. The Boy Scouts, an organization to which Tristan belonged for years, uses the symbol.

Was it somehow, through a series of small errors, sent to me by Tristan’s energy? No one can say for sure. My friend Kay, who lost her son, taught me to see these unusual events as signs from our loved ones. She would say, “Thank you, thank you, send me more.” Because she is open to the possibility and watching for it, she notices what others might readily dismiss, and she feels a precious sense of connection with and gratitude toward her son.

So I am going to accept this gift as if my son sent it to me and give thanks for this unusual and wonderful circumstance.

Thriver Soup Ingredient:

If you have lost a loved one to cancer, watch for interesting and unusual signs that this person is communicating with you. If something happens, give your loved one thanks and ask for more.

Thriver Soup Article: Special Delivery, by Heidi Bright

Patricia’s Journey with the Purple Dragon

Resources, , , , , , , ,

Once the soul awakens, the search begins and you can never go back.

John O’Donohue

The soul of Patricia Moreira-Cali has been stirred into full life by a purple dragon known as leiomyosarcoma. It is a rare and aggressive form of cancer, and for women it usually starts in the uterus.

On April 23, 2013, Patricia’s uterine “fibroids” were found to be cancerous, and she began a perilous journey that continues today. She bravely talks about her first year after the diagnosis in her book, My Journey with the Purple Dragon. She goes into vulnerable detail about her emotional experiences and her search for a cure.

“Friends and family are not with you at all times of the day and night,” she wrote. “You are alone when the tears seem endless, when the sorrow is so painful that it’s hard to breathe, when the grief cuts through your core, when you long for the freedom to feel healthy, and when you are introduced to death, and somehow you befriend it.”

She experiments with a variety of complementary treatments while doing conventional chemotherapy. “I have no doubt that the treatment of cancer, and many other chronic diseases, requires a holistic approach,” she wrote. Among her choices were to visit John of God in Brazil, and she describes her experiences there.

Gradually, the reader witnesses Patricia’s inner transformation. “A new me is emerging, growing and flourishing, somehow,” she writes.

When she reaches the end of her first year of treatment, she finds an enviable place of serenity. “I have detached from much illusion, and I feel mostly at peace within.”

The book is self-published and could benefit from professional editing, yet overall it is a moving story of courage and a roadmap for others on the journey with cancer.

 

Thriver Soup Ingredient:

Profits from Patricia’s book sales go to leiomyosarcoma research and to support a poor child with cancer through her non-profit Helping Children Heal (HCH). Her book can be ordered at http://www.purpledragonjourney.com/order-now/

 

Sources:

Patricia Moreira-Cali, My Journey with the Purple Dragon: Living with a Rare and Aggressive Cancer. Bloomington, IN: Balboa Press, 2014:78,100, 105.

Thriver Soup Article: Patricia’s Journey with the Purple Dragon by Heidi Bright