Tag Archives: 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.

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–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

Mary Celebrates Sarcoma

Resources, , , , , ,

​Praise the Lord, my soul; all my inmost being, praise His holy name.

Psalm 103: 1, Christian Bible, New International Version

 

Mary Connolly shares from her heart her journey through a devastating cancer diagnosis to celebrating sarcoma with a thankful heart.

At age 21, while still a college student, synovial sarcoma was found in her leg. Meanwhile, her sister was undergoing gamma knife surgery for a brain tumor.

Mary had surgery that left her unable to lift her right foot upward. She had to get her car modified with a left foot pedal. Away went all her beautiful, beloved shoes. That was just one of numerous challenges she faced, including in her relationships with family, friends, and potential boyfriends.

Mary turned these challenges into opportunities. Now when people ask about her foot brace, she uses that as an opening to raise awareness about sarcoma.

Mary’s faith played a huge role in her healing journey. Her book, Celebrate Sarcoma, is filled with her prayers and Bible verses reflecting her struggles with her understanding of God.

Eventually she came through to the other side of depression. Mary wrote, “I decided that I wanted to do something meaningful with my life. Something that would not just benefit my family and close friends, but an even wider circle of people. I decided that I could be nothing but thankful for how the cancer brought about positive change in my life…. God has blessed me with a maturity and insight that many don’t have even after experiencing successful careers. For this I am grateful.”

Reflecting back on her experience, she writes, “As much as I have despised cancer for the havoc it has wreaked on me, I have reached a place where I can’t imagine my life without this experience and the journey on which it has set me. I am grateful for the lessons I have learned, the relationships I have built, the experiences I have had—some that have brought tears of sadness or joy, others that have brought laughter or mourning.”

Through it all, Mary has reached a place where she can celebrate sarcoma. She looks forward to working with young adult cancer survivors.

 

Thriver Soup Ingredient:

The sale of Mary’s book will benefit orthopedic cancer research at The James Cancer Hospital and Solove Research Institute in Columbus, Ohio. The book is available athttp://www.amazon.com/Celebrate-Sarcoma-Mary-Connolly-ebook/dp/B00Q9X5EHG/ref=sr_1_1?ie=UTF8&qid=1449889641&sr=8-1&keywords=celebrate+sarcoma .

Thriver Soup Article: Mary Celebrates Sarcoma, 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