Tag Archives: sarcoma blog

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.

Achieving the Best Sarcoma Outcomes

Achieving the best outcomes with sarcomas 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. Angela Hirbe, assistant professor of medical oncology at Washington University School of Medicine, spoke first, and said, “We know the best sarcoma outcomes are achieved by multidisciplinary teams.”

Dr. Brian Van Tine, Sarcoma Program Director, Siteman Cancer Center, said there are about 40 sarcoma doctors in the United States and they meet once a year to talk about what’s coming and what’s working. “We’ve dedicated our lives to doing something about these poor outcomes compared to other cancers. It is a world-wide community of sarcoma doctors that is still quite small. It’s a tight community.”

He added that in-house clinical trials are investigator-initiated. Dr. Van Tine, for example, would use institutional funds for an in-house clinical trial, so he would be limited in what he can do.

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.

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.

Trumping Donald by Creating Beauty

I’m going to make everything around me beautiful. That will be my life.

Elfie Dewolfe, 1859?–1950

 

A friend who was upset about the recent U.S. presidential election read to me the above quote by an American actress and interior decorator. She now is taking this message even more closely to heart.

Others are deeply upset by the election of Donald Trump. One friend cried, feeling that her entire life’s work on behalf of women suddenly was stripped away.

Hidden Voices: Biblical Women and Our Christian Heritage
Hidden Voices: Biblical Women and Our Christian Heritage

A blog reader identified this response as a “time of stress for women.” She wrote, “I had hoped that you would speak yet again for those Hidden Voices.” She was referring to my first traditionally published book about women from the Christian Bible who had been silenced for millennia and only now are being heard with the respect they are due.

“Just know that we value your voice, which can console and comfort in facing the unknown future (culturally, socially, politically, in terms of faith, family, etc.),” she added.

Among the unknowns are how peace and justice issues in our nation could be affected. One response has become the creation of a Women’s March on Washington scheduled for Inauguration Day, Saturday, January 21, 2017, from 10 a.m. to 4 p.m. at the Lincoln Memorial, 2 Lincoln Memorial Circle, NW, Washington, D.C. As of today, according to the national Facebook page, 96,000 people are “going.”

Look on the internet and you can find many protests against the election of Donald Trump. If you feel so inclined, these might be a way for you to make your voice heard.

Another outcome that is feared is the loss of medical insurance currently made possible for many through the Affordable Care Act, especially among those with pre-existing conditions—like cancer patients.

I know I would have passed away long ago if I had not had the conventional medical care I needed.

Naturally, this is extremely frightening for some.

Yet we always have options. If there’s anything I learned in psychotherapy, it is that I don’t have to play victim anymore. I have choices I can make. Even author Viktor Frankyl (1905 to 1997), father of logotherapy, had choices while interred in totally controlled Nazi German death camps. And he survived.

I recall a family member who, just a few years ago, did not have medical insurance for surgical removal of large kidney stones. So he got on the phone and called one provider after another, obtaining their price points and then asking the next ones if they could do better.

He got major surgery done for about $5,100, a whopping 83% savings, using the phone and the free-enterprise system.

One cancer patient chose to have her surgery done in India. It cost less to fly over and even do a little vacationing there than having the surgery done in the United States. She was happy with her results.

It’s so easy to experience resignation and take on a co-dependent victim stance. To get out of these moods, I have a practice of stopping the mental stories and instead paying attention to these energy-in-motion (e-motion) sensations of hurt, fear, and powerlessness as physical experiences in my body. When processed in a healthy way, I then rise up into textures such as peace, no-thing, and/or gratitude. My body lets go of the stress and I can make better decisions. This powerful healing process is explained in the “Mapping the Emotions” section of Thriver Soup, pp. 183-235.

Once I complete the map, I am able to do as Elfie Dewolfe says and “make everything around me beautiful.”

Thriver Soup Ingredient

How can you make your life more beautiful right here, right now? I focus on making the world a better place through my blog, speaking, and writing. I’d love to hear what you are doing to make the world a more beautiful place so these ideas can be shared with others.

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.

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.

Chemotherapy Clinical Trials

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

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.