Tag Archives: Leiomyosarcoma

How Can We Help Protect Ourselves from Covid-19?

How can we help protect ourselves from Covid-19 when our bodies are already vulnerable because of cancer?

Almost every disease in older adulthood is made worse by inflammation in our bodies, according to Chris Fagundes, an assistant professor of psychological sciences at Rice University. [1]

Inflammation appears to play a role in Covid-19. This virus turns deadly when the body overreacts to the invasion and creates a “cytokine storm.” According to Randy Cron, M.D., Ph.D., University of Alabama at Birmingham, “Cytokines are inflammatory immunologic proteins that are there to fight off infections and ward off cancers… But when they are out of control, they can make you very ill.” [2]

Therefore, perhaps a good defense against Covid-19, and cancer, is a good offense: reduce inflammation in the body.

In addition to my 26 tips for improving immunity to help prevent contracting the virus (which you can find on my blog, all from my book, Thriver Soup), I will next be offering dozens of tips for reducing inflammation in our bodies to help us all stay a little healthier.

Here is a primer on inflammation, which is one of hundreds of reflections I offer in Thriver Soup:

“When threatened by wounds, irritation, or infections, cells inflame to assist with the transition back to health. A molecule called nuclear factor-kappaB (NF-kB), which normally resides in cell cytoplasm, moves into the cell’s nucleus (hence the name ‘nuclear factor’) and generates redness, heat, swelling, and pain. When the body heals, the NF-kB molecules return to the cell cytoplasm.

“NF-kB, however, also provokes the genes involved in creating chronic inflammation, which generally does not help the body heal. Instead, long-term heat and swelling becomes an open invitation to cancer. One-sixth of all cancers are directly linked to chronic inflammation. Most, if not all, cancers have unusually high levels of active NF-kB. This protein is considered their missing link. Researchers, for example, found that NF-kB regulates the inflammatory cascade necessary for breast cancer cells to proliferate and metastasize.

“Fortunately, inflammation can be smothered through diet and supplements. NF-kB can be suppressed by phytochemical-rich spices, vegetables, and fruit. Antioxidants can block the proteins so they don’t move into cell nuclei. Vitamins C, D, and E, curcumin (found in the spice turmeric), the herb ashwagandha, pomegranate extract, garlic extract, ginger root, green tea, omega-3 fatty acids from fish oil, and isoflavones found primarily in beans can be effective cellular firefighters. I found such a diet helped reduce my discomfort during treatment, decreasing my need for pain medications.

“When brought back under control, NF-kB provides the body with important healing mechanisms…. Keep the chronic flames doused with an anti-inflammatory diet to help preserve your internal landscape.

Thriver Soup Ingredient:

“Ask your doctor to measure inflammation markers in your blood (C-reactive protein and albumin). ‘Patients with the lowest level of inflammation were twice as likely as the others to live through the next several years,’ according to long-term studies by oncologists at the Glasgow Hospital in Scotland.

“Talk to your oncologist about what anti-inflammatory foods and supplements work well with your treatment choices.”

Thriver Soup, Pg. 174

Other sources:

[1] [https://www.forbes.com/sites/daviddisalvo/2018/10/30/new-research-on-inflammation-shows-how-extreme-emotions-can-undermine-health/#4bc491af56f5]

[2] [https://www.forbes.com/sites/claryestes/2020/04/16/what-is-the-cytokine-storm-and-why-is-it-so-deadly-for-covid-19-patients/#6b77ed6460fc]

NLMSF’s “Tackling Leiomyosarcoma” at The James in Sept.

The NLMSF.org symposium “Tackling Leiomyosarcoma: A Team Approach” was brief and to the point, held in Columbus, Ohio, during September. Here Floor Backes, MD, at The James, talks about ULMS.  Thank you, Annie Achee and Mitch Achee, and all who made this program possible!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Joel Mayerson, MD, spoke about a surgical perspective on LMS of the limbs. Here he identifies the differences between benign and malignant tumors.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

And here is another informative slide:

 

 

 

 

Free Dedicated Helpline Coming Sept. 1 for Leiomyosarcoma Guidance

If you or someone you love has Leiomyosarcoma, you will soon be able to call a new helpline offering free counseling support. The designated phone number will go live Sept. 1, 2018, and is a collaborative effort between the National LeioMyoSarcoma Foundation and the Cancer Support Community. Operating hours will be Monday through Friday, 9 a.m. to 9 p.m. Eastern Standard Time. The phone number will be announced by Sept. 1. International rates apply.

Trained CSC professionals and counselors will provide information, counseling, and navigation services in both English and Spanish at no cost to callers.

Medical advice is not provided, and must be directed back to the patient’s oncology care team. Information provided on clinical trials and genomic/genetic testing must always be further discussed with your oncologist/oncology care team.

Cancer Support Helpline services include, but are not limited to:

  • Connecting callers to local or national resources, transportation services and other local programs where patients live, providing direct coordination support to patients
  • Short-term cancer counseling and emotional assistance
  • Treatment decision planning in support of the oncological care team
  • Financial navigation and counseling regarding the costs of cancer and its treatments
  • Specialized information on finances / financial planning guidance
  • Clinical trials navigation/information and search assistance
  • Genetic/genomic information assistance
  • Access to an online distress screening program, CancerSupportSource®
  • General information about the Cancer Support Community

For questions, please contact Annie Achee at annieachee@aol.com.

NLSMF also has created a new website about life changes: https://nlmsflifechange.wordpress.com/

It is better to have loved and lost, on Mother’s Day

… O evil day! if I were sullen / While Earth herself is adorning / This sweet May-morning; / And the children are culling / On every side / In a thousand valleys far and wide / Fresh flowers; while the sun shines warm, / And the babe leaps up on his mother’s arm:— / I hear, I hear, with joy I hear!

“Ode on Intimations of Immortality,” Recollections of Early Childhood by William Wordsworth (1770 – 1850)

 

Flowers from TristanMy heart melted whenever my son Tristan brought me flowers he had culled.

When he was nearly three, he joyfully handed me discarded artificial blossoms. He asked me to smell them, so I did.

I asked, “What do they smell like to you?”

He plunged his face into the bouquet and breathed in. He looked at me with all seriousness. “Cheerios.”

For me, nothing has been more wondrous than raising my boys. Even with the exhaustion, the frustration, the terror, the powerlessness. The sorrow.

My motherhood began later in my life than for most mothers. A week after the due date, an ultrasound indicated my firstborn was twelve pounds.

Um, he wasn’t coming out naturally, even though I had a great midwife.

Sighing, I scheduled a C-section.

I had another week to wait. I was reminded of the words of Jesus when he broke bread with his disciples for the final time: This is my body which is broken down for you; This is my blood which is shared with you. Greater love has no one than this, than one lay down her life for her friends.

Or for one.

A baby boy named Tristan.

“Congratulations,” my doctor said after the surgery. “You’ve given birth to a two-month-old.” Tristan looked enormous beside the normal-sized babies.

I loved this precious new being with every breath. I held him at every opportunity. I sang to him, talked to him, read to him before we even left the hospital.

I wrote in my journal: “When I look at this baby, I don’t see a child; I see an extension of myself. I feel a bond that is stronger than death. It really hurts my soul to see him cry. I love being able to nurse him—to feed him with living water from my innermost being. To nourish and sustain him with my body. To give to him from my life’s blood, for it takes blood to make milk.

“Now I know what a mother’s love is. It has nothing to do with how the child turns out or how smart or gifted he is. All that matters is his happiness.”

When Tristan was a week old, I held him in my arms while I rocked. I cried for half an hour—a slow, silent, teary cry. I never wanted him to be hurt, so I prayed for his protection.

How prophetic. He could not find happiness for himself. He did not have the protection he needed.

It is said it’s better to have loved and lost than to never have loved. At the National Leiomyosarcoma Foundation national conference in 2015 I spoke briefly about losing Tristan two months earlier. A woman came up to me, her eyes brimming with tears, her voice tremulous. She had lost her daughter a decade earlier to leiomyosarcoma. The pain of losing a child can come up anytime, anywhere, and produce copious tears. Time does not erase the agony. Would she trade this desolation for never having her beloved daughter? Never. No, never. I know that love and am grateful for the 19 years I shared with Tristan.

And the bond of love continues beyond the grave. It is deathless. (And as I write this, the song “We’re Walking in the Air” randomly plays on Pandora—it’s one of the songs played during Tristan’s memorial service. He is with me, even now… His essence is deathless. His presence is present. His love lingers.)

Even without this precious child still embodied to celebrate Mother’s Day with, I would be remiss to be sullen. I loved being his mother for 19 years; even in the darkest hours, I loved him with all my heart. He knew. And he still does.

So I will celebrate with my living son, my second-born, who soon will have lived longer than his older brother. He delights me with his humor, his insights, his love. He is the treasure of my life.

I have much to celebrate.

Thriver Soup Ingredient:

Please share this post with mothers who have lost their children. Thank you.

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.

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.

Immunotherapy as a cancer treatment

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.

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.