All posts by Heidi

Surgical Management of Uterine Smooth-muscle Tumors

Conventional Methods, Softening Surgery, , , , ,

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

Conventional Methods, Resources, , , , ,

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.

Immunotherapy as a cancer treatment

Conventional Methods, Events, , , , ,

Immunotherapy as a cancer treatment 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. Mohammed Milhelm, Holden Chair of Experimental Therapeutics at the University of Iowa, said “Sarcoma doctors aren’t happy with the current treatments available. I’m trying to move immunotherapy into sarcoma treatment.”

Historically, immunotherapy is used to stimulate the immune system, yet if our immune systems are always accelerated, we would not live. “We have a good brake system in our bodies,” he said.

Immunotherapy is using the body to target the tumors. “A lot of people are thinking about immunotherapy in combination with other treatments,” he said. “We are still trying to understand how the immune system works. It’s tricky and complicated.”

A lot of questions are coming up about how to do immunotherapy. Sometimes imaging months after treatment ends might show significant improvements. Combining immunotherapy with radiation might help the immune drug work better.

Newer, more powerful drugs are on the horizon. “We’re learning a lot from the melanoma world and trying to transfer it to other cancers. There haven’t been enough immunotherapy treatments with LMS to know if it is effective.”

Swelling can be a big problem, especially in the bones and the brain, and is a concern researchers still don’t know how to address.

There is a lot of promise right now, but researchers don’t yet know how to translate it into treatments for LMS.

Chemotherapy Clinical Trials

Conventional Methods, Cushioning Chemotherapy, , ,

Chemotherapy 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 am reporting about during the coming weeks.

There are 70 different types of sarcoma, and treatment is moving toward individual types of sarcoma using genetically specific molecular therapy, said Dr. Scott Okuno, Chief Medical Officer in Sarcoma Alliance for Research Through Collaboration, a non-profit research cooperative,  and professor of oncology at Mayo Clinic.

“As we get deeper into LMS, we find molecular subtypes of LMS,” he said.

He explained that adjuvant treatment is preventative. Typically a tumor is removed and the patient is given additional treatment to eradicate microscopic metastatic cells.

Neoadjuvant treatment is given prior to removal/ablation of a tumor, and is used to shrink the tumor and eradicate any microscopic metastatic cells.

In determining which path to follow, the physician will look at outcomes. For neoadjuvant treatment, for example, perhaps 33 percent (about three of 10 patients) will have a recurrence.

With adjuvant treatment, there might be another 33 percent reduction in recurrence—which means instead of three out of 10 patients with recurrence, there will be two out of ten patients with recurrence.

Chemotherapy is given when a tumor cannot be surgically removed.

In clinical trials, a tumor has to decrease in size by 30 percent to be considered a partial response.

Progression has to be a greater than a 20 percent increase for the treatment to be considered no longer working.

Sometimes the lump might get bigger but the tumor is dying, so the percent increase in size is allowed. One needs a sarcoma specialist to determine if the growth is from dying cells or from a growing tumor.

Dr. Mohammed Milhelm, director of the Melanoma Program at the University of Iowa, added, “We really don’t know what’s going on inside the tumor.”

Dr. Okuno said Gemzar and Taxotere together aren’t showing much difference beyond just what Gemzar can do. Dacarbazine alone doesn’t make much difference. Yet when Gemzar and dacarbazine are combined, patients tend to have better outcomes. A difference in outcomes also was found in the rate of infusion—for example, infusing the same amount of chemotherapy over a longer period of time can result in better outcomes.

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)

Weighing of the Heart

Congruent Care, Night of Mourning, ,

tristan-hamsterO my heart which I had from my mother! O my heart of different ages! Do not stand up as a witness against me, do not be opposed to me in the tribunal, do not be hostile to me in the presence of the keeper of the balance, for you are my ka which was in my body, the protector who made my members hale. Go forth to the happy place whereto we speed, do not tell lies about me in the presence of the god; it is indeed well that you should hear!

“The Papyrus of Ani,” Chapter 30b, Egyptian Book of the Dead

 

One’s heart is weighed after one passes away, according to the Egyptian Book of the Dead. In this hymn to the Great God, a human is confronted by a tribunal and his deeds are balanced against the weight of a feather of Ma’at, goddess of truth and justice. His heart must be lighter than this feather to enter into the abode of the gods.

Did my son do his best? Did he face any kind of judgment when he crossed over? The Spirit knows us more intimately than we know ourselves—our deepest truths, our darkest secrets.

It seems to me we judge ourselves more than others judge us, far more than the Spirit of Love would. Does a mother judge her son harshly enough to cast him away from her for all time? If not, then how could Love?

I know my son judged himself harshly. Yet I also saw in him the boy rescuing earthworms after a rain, having funerals for dead mice, giving gifts straight from his heart.

None of us are perfect. We are perfectly human. My son had his issues, yet in my mind the love outweighs the unfortunate behaviors.

May his heart be lighter than a feather.

Thriver Soup Ingredient:

If you find yourself allowing negative thoughts to roll around in your mind, see them for what they are: thoughts. They can be changed. It takes some effort. My friend Kay offers me suggestions for updating my thinking and my words. I believe it makes a difference, because I now judge myself less. As I judge myself less, I judge others less, and the world is a smidgeon happier for it.

Sources

The Papyrus of Ani, Chapter 30b (second copy), from The Egyptian Book of the Dead, copyright 1997 by Neil Parker. Retrieved 8/24/2016 from http://www.bardo.org/ani/ch30b_2.html

https://www.britishmuseum.org/pdf/3665_BOTD_schools_Teachers.pdf

http://www.newworldencyclopedia.org/entry/Egyptian_Book_of_the_Dead

 

Using unicorn unction

Conventional Methods, Cushioning Chemotherapy, , , ,

unicorn horn“ … perfectly conscious of the sanitary virtues which resided in its [the unicorn’s] nasal protruberance, and would dip its horn in the water to purify and sweeten it ere it would drink.”

Graham Everitt, Doctors and Doctors’

 

Medieval literature contains references to the horn of the unicorn being full of healing energy, according to William Jackson in The Use of Unicorn Horn in Medicine. “It was even said that poisoned wounds could be cured merely by holding a piece of the horn close to them,” he writes.

Some European royalty claimed to have unicorn horns, and some ceremonial chalices were made from these rare and exotic treasures because they were believed to neutralize poison. These objects most likely were made from the long, single tusks from narwhals, which are medium-sized Arctic whales.

A tapestry at The Met Cloisters in New York City depicts a unicorn dipping its magical white horn into a poisoned stream to purify the water so onlooking animals could safely drink.

Perhaps a little unicorn unction could be useful for dealing with the side effects of poisonous chemotherapy.

During 2014, a five-year-old said she wanted to ride a unicorn when she finished chemotherapy. Lily Raffray’s wish was granted—a party was thrown for her, complete with a ride on a beautiful white horse sporting a unicorn horn.

That seems like some pretty sweet medicine to me.

Thriver Soup Ingredient:

For fun, add a little unicorn magic to your chemotherapy experience. Place a unicorn on a home altar, wear a unicorn pendant, or cut out a picture of a unicorn and tape it to the chemotherapy infusion bags or your water bottle. Then ask for the blessing of healing unicorn-like unction in your experience to reduce the side effects of the poisons.

Sources:

Everitt G. Doctors and Doctors. London: Swan, Sonnenschein, Lowrey & Co; 1888, as found in “The Use of Unicorn Horn in Medicine,” The Pharmaceutical Journal, 18 Dec. 2004, by William Jackson, referenced Aug. 11, 2016, from http://www.pharmaceutical-journal.com/news-and-analysis/features/the-use-of-unicorn-horn-in-medicine/20013625.article

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

http://abcnews.go.com/Health/girl-celebrates-end-chemo-magical-unicorn-ride/story?id=26275119

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

Getting Hit Below the Belt

Minding the Body, , ,

 beltWe cannot change anything unless we accept it.

C.G. Jung, Modern Man in Search of a Soul

 

We cannot change something if we are not aware that something is amiss. Awareness of our bodies is critical—especially when it comes to cancer. Awareness of, and then acceptance of anything amiss can be life-saving. The earlier a dis-ease is caught, the more easily it is healed.

September is Gynecologic Cancer Awareness Month, created to help everyone become more aware of women’s cancers below the belt.

Symptoms can include unusual periods, bleeding after menopause, pelvic pain or pressure, a rapidly growing uterine fibroid; even back pain or bloating. Here is a chart outlining the symptoms for these various cancers: http://www.cdc.gov/cancer/gynecologic/basic_info/symptoms.htm . Learn the symptoms and watch for them. If they crop up, please go see a gynecologist.

During 2001 I had a dream in which I was warned I could get punched in the gut. Eight years later I had stage 4 uterine sarcoma. This year about 59,000 women will be diagnosed with uterine cancer, and one in six will pass from it.

Ovarian cancer is the second most common gynecologic cancer, affecting about 21,000 new patients. And about two-thirds will pass from the disease because it’s usually caught when already spreading.

Cervical cancer comes in as the third most common, with 12,000 new cases identified. About 4,000 will lose their lives to it.

Vulvar cancer will be diagnosed in about 5,000 women, and about 1,000 will succumb; and 4,070 will be diagnosed with vaginal cancer, which will claim about 1,000 lives.

Watch for symptoms. Be aware. If you notice something, accept that it is there. Get it checked. It could save your life.

Thriver Soup Ingredient:

Knowledge is power—patient power, says Annie Achee, president of the National Leiomyosarcoma Foundation. If you hear a woman talking about symptoms of gynecologic cancer, please suggest getting them checked by a physician.

Sources:

http://www.foundationforwomenscancer.org/about-gynecologic-cancers/

American Cancer Society, Inc.