Category Archives: Conventional Methods

Chemotherapy, Surgery, Conventional Companions

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.

Mesothelioma Website Gives Virgil a Chance to Survive

Note: Virgil Anderson is alive today and receiving life-saving treatment because he found an organization that provided him with the information and support he needed. As we all share what we learn from our journeys with cancer, whether ours or another’s, we can give each other more options and genuine hope. Thank you, Virgil, for sharing this with us.

Virgil writes:

My story of illness and cancer is similar to the struggles of others: I was diagnosed at 50 with the devastating type of cancer called mesothelioma. I am now very sick and fighting for treatment and for my life. I am limited and unable to enjoy the activities I once did. Just breathing is difficult for me now, and I can blame all this on exposure to asbestos.

My message is an important one, and I want to educate people about the risks of exposure to asbestos. I want other people to know that prevention is important with mesothelioma and that early detection and diagnosis are crucial for effective treatment. Avoid asbestos, but if you have been exposed, get diagnosed and treated as soon as possible.

I grew up in the small town of Williamson, W.Va., and my story with asbestos began in high school. I worked in demolition, taking down buildings with tools and with my own hands. It was hard work and I was exposed to asbestos-laden dust. Disrupting asbestos in older buildings is one of the top ways people are exposed to asbestos fibers.

After that job I moved on to others, including working on cars. I tore out and replaced hood liners and made repairs to cars, including working with clutches and brakes. All of these parts contained asbestos. Without knowing the dangers or how to protect myself, I was again exposed to asbestos fibers.

Asbestos was once used extensively in so many applications, especially in the construction of buildings. The real dangers of inhaling or accidentally consuming this mineral were not known until the 1970s when regulations were finally put into place. Because I never knew the risks, I worked for years around asbestos and now I have mesothelioma.

I am now living with the consequences, as are many other older Americans. Mesothelioma sneaks up on you many years after asbestos exposure. I now have a hard time breathing and even walking. I spend much of my time in bed, unable to do normal daily tasks. My symptoms include chest pain, a terrible cough, and shortness of breath.

Treatment is limited for me. Treatment for mesothelioma is already difficult, but my cancer has spread to the lymph nodes so surgery is not an option. I am hoping to undergo chemotherapy, which may shrink the tumors and bring me some relief, but a cure for this disease just isn’t possible.

I hope that by sharing my story as far and as wide as I can that I will reach people who may still be able to take steps to prevent mesothelioma or to get screened and treated early. If there is any chance you think you may have been exposed to asbestos, do not wait to talk to your doctor about it. Monitor yourself for symptoms and get screening tests to catch this terrible disease early. My story should help others avoid a similar fate.

 

Get Thee to an ER

My bowels well up, and rest not; days of affliction have confronted me. 
Job 30:27, Darby (Christian) Bible Translation

From Dec. 12 to 14 I sat in my easy chair in pain, my bowels welling up, gassy, and juicy. My stomach kept emptying itself into the pot I kept handy. Hot water bottle, massage, playing healing sounds… all to no avail. Nothing could go down, nothing was coming out.
I finally called my doctor. “Get Thee to an ER,” he said.
When we hung up, my friend Laura Dailey, whom I had not seen in weeks, was parked on my driveway. What an angel she has always been for me. She promptly took me to the hospital.
The ER doc found a twisted small intestine on the CT scan, something I’d been warned could easily happen after my initial nine-hour cancer surgery in 2009. In 2011 I had an intestinal blockage that resolved, and in 2012 a hernia had been spotted on a scan, but my oncologist suggested I leave it alone unless it became a problem.
It had become a problem.
I texted my 19-year-old son to update him on my status. He dropped everything, went to my house to pick up a few more things, and came to the hospital to stay throughout my days of affliction. I feel so blessed.
A stiff yet flexible plastic gastro-intestinal tube was placed through my nose down to my stomach. I’d had one in 2009 for my first cancer surgery, but it was placed while I was under anesthesia. This time they placed it with me fully awake. One nurse said, “This is the worst torture we do to our patients.” I had to keep my head down and swallow a cup of water while the nurse struggled to get that hose down into my gullet. I gagged and coughed as it went down, then suddenly felt very cold and shook violently for several minutes. The severe throat pain began.
The next morning the surgeon said portions of the intestines had poked through the hole and could die if he didn’t operate. My sister, epidemiologist Dr. Roselie Bright, participated in the conversation by phone and urged me to move forward with the surgery, even though my abdomen had started softening. I opted for surgery.
There was no time to pick up the Surgical Support Series CDs from my psychotherapist. As a substitute, I repeatedly played tai chi Grandmaster Vince Lasorso’s “Relief” recording through my Wholisound Serenity Box using a new portable CD player Laura bought me for this purpose.
Laura alerted people via Facebook. Many thanks to all who supported and prayed for me!
It was another 12 hours—Thursday night—before I was wheeled onto the operating table. The surgeon updated my Superwoman abdominal scar with a 4-inch replacement.
With pain medication the tube was more tolerable, but talking still was quite difficult.           What a blessing to get that tube pulled on Saturday! That enabled me to get off daytime pain medication (which distressed the nurses) and then off all medication when I went home Sunday, 2.5 days before expected. My days of affliction are over and I’m recovering well. I am thankful for the miracles of modern medicine.

Thriver Soup Ingredient:
The nurses were distressed about my not taking daytime pain medication or taking home a pain prescription. “You need to stay on top of the pain,” I’ve been told. Well, I didn’t have pain. I only had discomfort. Part of the reason, perhaps, is because my inflammation level normally is extremely low (0.3 on a scale of 1 to 4). I keep it low with my diet. A lot of pain comes from inflammation, so without excess inflammation, injuries ares much more tolerable. If you are in pain, try reducing inflammation in your body by avoiding inflammatory foods, which can be measured with a blood test looking for C-reactive protein.

Happy Holy-days!

This past week’s blog wasn’t posted because I was sitting in the hospital with a painful gastric tube down my nose and no computer.

I remain free of evidence of cancer. I will blog about that in 2 weeks.

Two weeks ago I tried sending out the blog using a new browser and only half the blog emails were sent, so if yours didn’t arrive, please check “Achieving the Best Sarcoma Outcomes” http://thriversoup.com/2016/12/08/achieving-the-best-sarcoma-outcomes/. I always post when possible, and this week I will return to the original browser that usually sends the emails correctly.

Have warm and wonderful holy-days!

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.

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.