Navy Veteran Pursues Mesothelioma Immunotherapy Trials

Calling Jim and Pam McWhorter the “outdoors type” would be an understatement.

The couple traveled regularly, enjoying hiking, camping and kayaking. In August 2014, they hiked 2,000 feet to the summit of Mount Washburn, a prominent mountain peak within Yellowstone National Park.

Eighteen months later, their lives changed when Jim got sick and was eventually diagnosed with pleural mesothelioma in May 2016.

“Today, he can barely walk two miles on a flat trail,” Pam told Asbestos.com from their home in Canton, Ohio. “Quality of life really takes a hit when cancer strikes.”

Jim, a 20-year Navy veteran, has kept a positive outlook through everything. A pleurectomy and decortication (P/D) and four rounds of chemotherapy removed all visible tumors until May 30, 2017, when the cancer returned in full force.

A CT scan revealed new spots on his left lung, lymph glands and liver. The cancer was now inoperable.

Jim was able to get into a clinical trial at Dana-Farber Cancer Institute in Boston, testing a combination of the immunotherapy drugs durvalumab and tremelimumab.

For the first few months, the results were extremely positive. The cancer had stabilized.

Unfortunately, a CT scan on Dec. 5 revealed new tumor growth, enough to remove Jim from the clinical trial.

That hasn’t stopped Pam, however. She is busy searching for other options, including getting Jim in contact with specialists at the National Institutes of Health Clinical Center in Bethesda, Maryland.

“I am already making connections to see if he qualifies for other trials, and as a fallback we go for more chemo to shrink the tumors until we do find a better immunotherapy treatment,” Pam said. “We’re attacking this like a warrior and not settling for less than the best.”

Pam and Jim McWhorter during a zip-line adventure in 2013.

Pam and Jim McWhorter during a zip-line adventure in 2013.

In the meantime, Jim continues to push himself. Although there are no planned trips to national parks in the near future, he continues to climb mountains, figuratively, every day.

“Walking helps tremendously with breathing,” Jim said. “I can’t express that enough. [Mesothelioma] patients need to get out and work those lungs. Right now, I’ve been trying to get up to my two miles a day of walking. I keep pushing it.”

A Frustrating Journey to the Truth

The McWhorters’ path to a mesothelioma diagnosis was long and frustrating, a common issue for patients with the rare, asbestos-related cancer.

Jim’s primary care doctor and doctors at his local VA clinic had never seen mesothelioma before and wrote off symptoms as less-serious conditions.

It all started in September 2015, when Jim tripped over something in the basement of their home and caught himself in the doorway. Thinking he may have hyperextended his chest muscles or possibly cracked a rib, Jim went to the VA for an X-ray.

He was told the X-rays came back clear. It wasn’t until March 2016, during an unrelated pharmacy visit, he would find out the scans revealed a telling sign of what was to come.

“They noted on his medical records that there was thickening on the outside of the left lung and diagnosed it as COPD, but they never told him,” Pam explained. “So we were alarmed that they diagnosed him with something potentially life threatening but never let him know.”

A few weeks earlier, Jim had received a pneumonia shot and became very ill, with trouble breathing and intense pain under his left ribcage.

Another chest X-ray revealed a buildup of fluid around his left lung. After a CT scan, doctors removed the fluid.

Six weeks after the drainage, the fluid returned and doctors said an infection had built up. Another CT scan was given, and what was meant to be a routine decortication to remove the infection discovered what appeared to be tumors.

Doctors again said there was nothing to worry about, even after Pam suspected it may be mesothelioma.

Pam and Jim didn’t see the CT scan results initially, which is something she urges other mesothelioma survivors to push for.

“The doctors are telling us it’s just an infection — three doctors, including our family doctor, and the surgeon,” Pam said. “We got the CAT scan report after his surgery, and on that report from April, it said ‘Nodular thickening, suspect for mesothelioma, doctors should take immediate action.’ Three doctors missed or completely ignored that warning. If we had seen that warning, we would have taken a different path with surgery or sought out a specialist.”

Becoming Their Own Advocates

If the drawn-out diagnostic process taught the McWhorters anything, it was the importance of being your own advocate.

“We know mesothelioma is very specific and very hard to treat, and nobody here knows anything about it,” Pam said. “That taught us a lesson that you have to be your own advocate for your medical care. You have to request the documents, read it yourself and become versed in the medical terminology, so you can make better decisions.”

After the tumors were finally tested, the pathology report revealed it was pleural mesothelioma with the epithelioid cell type.

Pam was able to get Jim into the Cleveland Clinic to see a mesothelioma specialist and a thoracic surgeon.

“They only gave me six to 12 months to live,” Jim said. “The doctors said if they did the pleurectomy, it would extend my life by two to four months. My prognosis wasn’t very good, and I quit listening to it.”

After not getting the answers they were looking for, the McWhorters searched outside their home state, connecting with Dr. Joseph Friedberg at University of Maryland Greenebaum Cancer Center in Baltimore.

“He agreed to do the surgery and said ‘I’m not going to give you a prognosis — it’s not up to me how long you live — I’ll give you the best chance to make it through this disease, but it’s between you and your God how long you live,’” Pam recalled. “Another lesson in all this is to not be afraid to cancel your appointments and change doctors at the last minute.”

The surgery lasted seven hours. Doctors described the tumor as an orange rind that had entirely encased Jim’s left lung. It was three-quarters to an inch thick in diameter and up to two inches in some places.

“Dr. Friedberg said it was the largest tumor he had ever seen, and he had done over a hundred of those surgeries,” Jim said. “It was large enough to fill a two-liter Pepsi bottle.”

After returning home, Jim received multiple rounds of chemotherapy. He went about 11 months without any signs of recurrence before the cancer returned.

The McWhorters pursued proton radiation therapy before finding the immunotherapy clinical trial at Dana-Farber.

“I knew immunotherapy was something they were working on, but it seemed very far out of reach for us,” Pam said. “I kept it in my background, but I never thought we would qualify.”

When Jim was dismissed from the Dana-Farber study — after scans showed new tumor growth — Pam immediately started looking for other immunotherapy clinical trials.

“We are not sitting still, but digging into other options,” Pam said.

Military Asbestos Exposure Put Jim on Alert

During his stint in the Navy, Jim served on the USS Francis Marion, a Paul Revere-class attack transport. The ship was launched in 1954 and commissioned by the Navy in 1961 — a period when asbestos use was rampant.

In 1978, Jim served on the Francis Marion when the ship was involved in a collision, releasing asbestos dust from the bulkheads.

For about six weeks, Jim and a small crew walked through this asbestos-contaminated environment without protective equipment, unknowing of the dangers.

“After about six weeks of showing contractors around the ship, the Navy came in and taped everything off, confirming the dust was asbestos,” Pam said. “By then, though, it was too late.”

And that wasn’t his only run-in with the toxic mineral. Jim worked as a gunner’s mate, working on the electrical systems of the guns aboard ships. He also worked with hydraulic pumps and was once in charge of lighting the boilers in the boiler room of a ship — one of the most high-risk areas for asbestos exposure.

The ships needed to be fireproof, so virtually everything included asbestos.

“The mattress ticking, the pillow ticking, even the curtains on the racks, everything was laden with it,” Jim said.

At the time, however, Jim wasn’t aware of the dangers of asbestos, like so many other service members.

“This was all after the fact,” he said. “It was too late then.”

Jim, mindful of his history of asbestos exposure in the military, was always conscious of what could happen to him.

He has taken the punches and keeps fighting. His focus now is being a mentor to other patients going through similar battles.

“We had someone mentoring us in the beginning, who’s actually doing very well and has become a good friend,” Pam said. “So now, Jim is seeing it as an opportunity to pay it forward. What we’d like to do is help other veterans navigate the red tape and get the treatment and resources they need.”

Top 10 Mesothelioma Survivor Stories of 2017

Statistics don’t lie, but they don’t tell the whole story of mesothelioma either.

Mesothelioma is a terrifying diagnosis, and because of its rarity, new patients often have no idea who to turn to for advice and perspective. At The Mesothelioma Center, our mission is to raise awareness of the dangers of asbestos and support those diagnosed with asbestos-related illnesses any way we can.

This includes sharing the inspirational stories of mesothelioma survivors and their caregivers. We never cease to be amazed by the spirit and resilience of the cancer survivors we hear from.

Survivors tell us their stories in the hopes of bringing hope to others just beginning their journey with mesothelioma, and we are deeply grateful for the opportunity to take part by sharing those stories with you.

These are the survivor stories that resonated with our readers the most this year.

Mesothelioma Survivor Playing Guitar, Touting Medical Marijuana

When Jim Huff was diagnosed with pleural mesothelioma, the thought of debilitating chemotherapy side effects did not appeal to him. Instead, he has been energized by his success with medical marijuana, buying him time to learn how to play the guitar.

“There are days I forget I’m even sick,” he said. “The doctors have just told me to continue doing whatever I am doing because it’s working now.”

Find out how Jim has benefitted from CBD and THC oil.

Mesothelioma Survivors Unite to Celebrate Remission

Trina West-Clark and Raeleen Minchuk were diagnosed with peritoneal mesothelioma on the same day, but 13 years apart.

Minchuk arranged to commemorate her three-year survival mark by joining West-Clark as she celebrated 16 years of mesothelioma remission with a trip to Lake Louise in Alberta, Canada.

Lean how Trina’s story inspired Raeleen to fight.

15-Year Mesothelioma Survivor Living Life by Design

Alyssa Hankus started showing symptoms of peritoneal mesothelioma at age 12 and was diagnosed at 15, making her one of the youngest to ever be diagnosed with the asbestos-related cancer.

Her high school experience was anything but normal, but she persevered and went on to earn a degree in interior architecture. Now 30, she looks forward to starting the next chapter of her life.

Read about how Alyssa defied the odds.

12-Year Mesothelioma Survivor Lives for Others

Chris and Judy Gibney waited years to build their dream home in the countryside, but when Chris was diagnosed with pleural mesothelioma, he thought he might never get the chance.

With the help of an expert medical team and his family’s support, however, he has lived to complete the construction of their dream home and see several grandchildren be born.

See how Chris exceeded all expectations during treatment.

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Are you or someone in your family a mesothelioma survivor or caregiver? Tell us how this cancer has impacted your life.

Share Your Story

‘Mesothelioma Warrior’ Refuses to Back Down

Judy Goodson met her peritoneal mesothelioma diagnosis with rare confidence, having already survived non-Hodgkin lymphoma. After two years of surgery and chemotherapy treatments, she was determined to get back to work.

“I often joke with my friends that mesothelioma whispered in my ear, ‘You can’t handle me,’” she said. “And I told mesothelioma, no, you can’t handle me.”

Read more about Judy’s uncommon optimism.

Mesothelioma Survivor Credits Unconventional Treatment Plan

When Ruth Phillips was first diagnosed with peritoneal mesothelioma in 1999, she received the same grim prognosis of eight to 12 months to live from three different cancer specialists.

Determined not to give up, she and her husband made alternative medicine their shared passion and found a combination of options that has worked for her.

Learn how Ruth has super-charged her immune system.

Survivor Overcomes Mesothelioma with Proton Therapy & Faith

Yvette King found her calling as a cancer survivor, using her story to inspire others and encourage them to become their own advocates.

She endured weeks of chemotherapy so she could qualify for a major surgery to remove a lung, followed by physical therapy so she could begin a highly specialized form of radiation therapy.

Find out how Yvette has navigated her treatment journey.

Family Grows Through Mesothelioma Survivor

Tamron Cox-Little thought her first pregnancy might be her last when doctors discovered cancer in her abdomen during a routine prenatal ultrasound.

Because the peritoneal mesothelioma was caught at such an early stage, however, she was able to make a full recovery. After going through surgery, chemotherapy and radiation, she went on to amaze her doctors by having three more children.

Read about how Tamron rebounded from treatment better than anyone expected.

Tamron Cox-Little was diagnosed with peritoneal mesothelioma at just 21. An ultrasound during her first pregnancy alerted doctors of her cancer.

Thrill-Seeking Mesothelioma Survivor Has Will to Live

When Cindy Christopher was diagnosed with peritoneal mesothelioma, she had her family’s longevity on her side — as well as a top cancer center with an inventive new approach to treatment.

More than a decade later, she is still working hard, riding motorcycles and pursuing her passion for roller coasters. “I chose the best possible surgeon,” she said, “and I told him definitively, I will be your best patient.”

Learn how Cindy’s determination brought her through recovery.

37-Year Mesothelioma Survivor Grateful for Alternative Therapy

Jerry Lampe might be the country’s longest-living mesothelioma survivor, and he continues to be as surprised as anyone he is alive and well.

He credits a controversial treatment called Immune Augmentation Therapy, which he received in the Bahamas from 1980 to 1985. Since then, he has lived an active life, grateful for every new day.

Read more about Jerry’s miraculous survival.

Honoring Loved Ones with Mesothelioma During the Holidays

The holidays mark a magical time of year that allows us to share our joy with friends and family.

It is a time of cheerful reflection on the blissful memories of the year gone by, filled with jingle bells and silent nights.

Perhaps it is the silent nights that produce such struggle and strife for families facing illness and loss.

For families dealing with mesothelioma or enduring a bereavement, the holidays may usher in a season of sadness and grief. They may face tough times ahead and holiday celebrations seem to further complicate things.

Gift-giving may add additional burden to already strained finances. Some may find difficulty in welcoming guests, wrapping presents and sharing in the holiday spirit.

Sometimes the reality of winter holidays sharply contrasts the images of holiday bliss with which the media bombards us. The season can be extremely difficult for families who have worries.

It might be unimaginable to deal with a seasonal celebration for someone who doesn’t feel like getting out of bed.

Finding Meaning in the Season

When grief and pain overshadow the happiness of the season, it might be helpful to find ways to draw meaning from the holiday.

Families can view special occasions as opportunities to honor their heroic loved ones battling cancer and memorialize those no longer living.

They also may find it refreshing to abandon the commercialization and the hustle and bustle of a traditional holiday celebration. When families face the crisis of dealing with cancer or loss, holiday traditions may become painful reminders of the way things used to be.

Incorporating a few changes can make a holiday a bit more endurable for struggling families.

Honoring Those Battling Illness

Cancer patients are among the most courageous and tenacious people one might ever encounter. They have the ability to stare down adversity while maintaining their commitments to their families.

There are times when they lay aside their personal worries and fears to support their loved ones.

Holiday celebrations offer a perfect opportunity to express love and gratitude for loved ones fighting an illness.

Unique hand-crafted keepsakes, kind words and thoughtful cards or letters might be ways to tell your loved one how you feel.

Some notions of love and admiration might include:

  • Storytelling: A family gathering is a great time to tell the story of your loved one, from your personal, thoughtful perspective. Narrate the tale of how your loved one has given you hope, shown you kindness and impacted your life. Add cherished family photos and music to complete the thoughtful tribute.
  • Propose a Toast: Whether you’re sharing hot chocolate, warm apple cider or a glass of wine, composing a toast is a thoughtful way to honor your loved one. Just as family members might toast a newlywed couple, each person might say a few meaningful words to express their love and devotion for the loved one battling an illness.
  • Share a Sincere Conversation: Holidays usually draw loved ones together in the same location. Use the opportunity of togetherness to express how you really feel. Sit together and give your loved one your undivided attention. There is no substitute for looking into the eyes of a loved one and sharing your heart.

Memorializing a Loved One

The holiday season can be a painful reminder that someone you love is gone.

Feeling sadness is a normal part of bereavement and might be even more pronounced during the holiday season. Most families celebrate the holidays together, so when the season rolls around again, it can be helpful to find ways to memorialize lost loved ones.

Incorporating thoughtful memorials into holiday celebrations allow family members to move on by carrying the memory of a lost loved along with them.

There are plenty of creative ways to celebrate a loved one during the holidays, including memorial candles and holiday ornaments. Families can create keepsakes to symbolize loving memories within their seasonal decorations.

Making crafts with loved ones is a healing way to spend time together during the holiday season, as well.

Some thoughtful ideas include:

  • Memory Candles: Crafting candles is an easy-to-make keepsake that symbolizes the family’s love and remembrance. Using coffee beans, potpourri or essential oils might help capture a fond aromatic memory of your loved one. Lighting the candle during a holiday symbolizes a family’s eternal love for one another.
  • Keepsake Ornaments: Placing a personalized ornament on the Christmas tree is a way to incorporate loving memories into a holiday celebration. Family members can create ornaments using photographs, handwritten notes or spiritual quotes. Making them together allows people to share funny or touching stories about their loved one.
  • Hand-Sewn Memories: Families can repurpose a loved one’s old or tattered clothes into meaningful holiday decorations. Family members can use the fabric from an old shirt to craft heart-shaped ornaments for the tree or string them together to make a decorative garland.

Dealing with the holiday season is taxing for families who already have more worries than they can handle. After learning of a cancer diagnosis — or losing a loved one — most people don’t feel up to celebrating the season in the same ways they once did.

Starting new traditions is a way to cherish old memories and create new ones.

Holidays aren’t just about giving gifts and pretty decorations. They are also about families sharing their love in tough times.

Exercise and Friendship Ease Mesothelioma Survivor’s Journey

David Doust is a well-known and respected figure at the Mandurah Seniors and Community Centre, located about an hour south of Perth, Western Australia.

Each Monday, he travels roughly 30 miles to Waroona, where he participates in and helps to organize an exercise class for people with mobility problems.

From Tuesday through Friday on most weeks, you will find him taking part in hour-long exercise classes or taking a 5-mile trip with other walkers around the town.

This amount of exercise for anyone in their 70s is quite remarkable. But for Doust, 74, a mesothelioma survivor, it is amazing.

Doust’s journey with the asbestos-related cancer began in early 2016 when he experienced shortness of breath, or dyspenea. Wrongly diagnosed with pneumonia, he underwent a pleurodesis to remove excess fluid from around the lungs and was soon back to his exercise routine.

His love of sport and competition also saw him taking part in several marathons, including the City2Surf event in Sydney, where he again experienced persistent dyspnea.

The fluid had returned.

Upon returning to Perth, he underwent another pleurodesis. This time the fluid was sent to pathology.

Doust will never forget the day his lung specialist called to inform him he had acute lymphatic leukemia and pleural mesothelioma — both attributed to his history of asbestos exposure.

Although deeply shocked by the double blow to his health, Doust had no doubt his time spent in the asbestos mining town of Wittenoom was the cause.

Where It All Began

The realization came with regret. While living in the town, Doust was aware of mesothelioma, but had not feared for his health.

He knew a good number of people who lived in the town for many years without illness, including a friend who resided there for more than 50 years and was perfectly healthy.

Additionally, he believed his nonsmoking habit and healthy lifestyle made him immune. It was sad to accept the town he loved so much had turned out to be his enemy.

Wittenoom, the small town situated approximately 870 miles northeast of Perth in the Pilbara region of Western Australia, was a mining stronghold for more than two decades. At one point, it was the only place in the country mining blue asbestos.

The operation was shut down in 1966 following the emergence of serious health risks, but another decade passed before authorities realized the blue dust spread throughout the town was potentially deadly.

In 2008, the government declared the town a contaminated site.

A Real-Life ‘Spider-Man’

Doust moved to Wittenoom in 1977 to work as postmaster — the last official postmaster of the now-infamous town — a position he held for three years before transferring to Paraburdoo and later to Donnybrook in the south of the state.

Retiring from the postal service in 1985, he returned to Wittenoom — this time to stay. After a few months working in the local garage, Doust opened his own business, Dave’s Gorge Adventure Tours, offering a range of guided tours into the Karijini National Park and surrounding gorges.

A lover of physical exercise, Doust relished the opportunity to keep fit while sharing his love of the area with the multitude of tourists that came to the town.

It wasn’t long before he earned the reputation as the best guide in the area. Affectionately known as “Spider-Man” because of his agility climbing cliffs, Doust ran his business for 13 years.

He could not have been happier.

Doust reluctantly closed his business and relocated to Perth after escalating concerns for public health saw the government begin preventing tourists from entering the town.

Fourteen years after leaving Wittenoom, Doust remained extremely fit. Still into running, he competed in several marathons.

In 2014, he was one of the oldest Australians to walk the Kokoda Track, a 60-mile hiking trail.

Staying Active Despite Diagnosis

Since his mesothelioma diagnosis, Doust has undergone two rounds of chemotherapy, both resulting in a mini stroke that left him hospitalized.

But even that wouldn’t hold him down.

Within weeks, Doust was back at the senior center taking part in exercises classes and enjoying other activities with his friends, who pray for him and offer support whenever needed.

Doust is quick to admit he couldn’t do it without them.

He is also grateful for the many services provided by the center, including a variety of healthy meals that come from the fully staffed kitchen. Never married, he lives alone and has no interest in cooking. Most days he eats a hearty lunch at the center and a simple bowl of soup — often provided by caring friends — at home later in the evening.

Fortunate to suffer no pain, Doust carries on in much the same way he always has. Mesothelioma has not changed his enthusiasm for life or his willingness to help others.

This year, like many before, he travelled to Chang Mai in Northern Thailand to an elephant nature park, run by the Save Elephant Foundation, a nonprofit organization dedicated to providing care and assistance to Thailand’s captive elephant population.

David Doust regularly travels to Northern Thailand to volunteer for the Save Elephant Foundation.

David Doust regularly travels to Northern Thailand to volunteer for the Save Elephant Foundation.

Here, along with fellow volunteers, he helps to care for the elephants. His chores vary, sometimes menial but never boring.

The opportunity to gain the trust of the majestic animals brings such joy it transcends all thoughts of illness, and it gives a sense of wonder that remains long after he returns to Australia.

For Doust, the only medicine he needs is good friends, plenty of exercise and a positive attitude.

“Try to do the things you would normally do,” he said. “Be active, and above all, keep up your friendships.”

Immunotherapy Summit Highlights Future of Cancer Treatment

In an eye-opening moment at the Cancer Research Institute’s Immunotherapy Patient Summit on Dec. 9, an informal poll revealed the selectivity and other challenges presented by clinical trials.

The audience was asked if they had been diagnosed with cancer. Roughly 90 percent of a near-capacity ballroom raised their hands. That group was then asked if they had ever participated in a clinical trial.

Only a few hands remained raised.

The goal of the summit was to dispel some of the misconceptions of clinical trials and connect cancer patients to a research study that could significantly extend their life.

For nearly 65 years, the Cancer Research Institute (CRI) has supported efforts to develop new and effective immune-based strategies to treat and prevent cancer.

The nonprofit organization is at the forefront of what many researchers and oncologists consider the future of cancer treatment: Immunotherapy. The most recent summit, held in Tampa, was the fourth stop in a five-city educational series, bringing experts in the field of immunology to cancer patients searching for the latest treatment options.

Immunotherapy uses your body’s immune system to help fight disease. Immunotherapy drugs such as pembrolizumab (Keytruda) and nivolumab (Opdivo) have shown promising results in mesothelioma clinical trials, and numerous survivors credit immunotherapy for living far beyond their initial prognosis.

The goal of CRI is to make immunotherapy more accessible to patients of all cancers and increase the amount of patients eligible for clinical trials.

“Only between 3 and 8 percent of patients who are eligible to enroll in clinical trials ever do,” Brian Brewer, director of marketing and communications at CRI said at the Tampa summit. “That’s something we at the Cancer Research Institute want to change. It’s why we have this educational series and it’s why we work so hard to connect [patients] with clinical trial options.”

Immunotherapy at Forefront of Emerging Treatments

The buzz surrounding immunotherapy is at an all-time high, but the science behind the therapy dates back to the 1890s when Dr. William Coley developed a treatment based on provoking an immune response to bacteria.

“The idea that we can now manipulate the immune system is unequivocal, and the tumor effect is also unequivocal,” said Dr. Philip Greenberg, head of the Program in Immunology at the Fred Hutchinson Cancer Research Center in Seattle.

Greenberg explained there are 40 to 50 billion T cells in the human body, and there are roughly 1 billion different receptors. T cells use these receptors to recognize cells and distinguish healthy cells from foreign cells, such as cancer cells.

However, many cancer cells can deceive T cells into thinking they are healthy cells. Immunotherapy drugs essentially unmask the cancer cells and empower our body’s T cells to recognize and attack malignant cells.

Today, more than 2,000 immunotherapies are currently in preclinical or clinical development, according to a recent survey from CRI.

Most immunotherapy drugs on the market today target the inhibitory molecules PD1 and CTLA-4, but researchers are currently testing dozens of other molecules in clinical trials.

“We’ve just reached the tip of the iceberg,” Greenberg said.

Dispelling Myths About Immunotherapy

In one of the standout sessions at the Tampa summit, Brewer listed off common misconceptions about immunotherapy and clinical trials.

Some common myths include:

  • Participants in a clinical trial may only receive a placebo or sugar pill instead of a treatment. This is only the case in trials where there is no standard of care available. “If there is a treatment available that could potentially benefit you, ethically, you will receive some form of treatment,” Brewer said.
  • Immunotherapy trials are only for those out of options. While this once was the case — with immunotherapy given only to patients with advanced metastatic cancers — the therapy is now used in early stages of certain cancers. “We expect that trend is going to continue,” Brewer said.
  • Patients must travel to large hospitals for trials. Many immunotherapy trials are available at smaller hospitals and clinics around the country as well as large regional cancer centers.
  • Once you’re in a trial, you can’t get out. This is never the case, according to Brewer. You are a volunteer in a clinical trial and at any point can decide the trial is not right for you and cease treatment.

Clinical trials can be a great resource for people diagnosed with rare cancers such as mesothelioma, because it gives them access to experimental treatments that otherwise are not widely available.

Immunotherapy clinical trials are also cost-saving for many patients, as the drugs themselves — which can cost tens of thousands — are often covered by the sponsor.

Resiliency on Display at Patient Summit

Aside from the informative lectures from experts, the thing that stood out the most from the Tampa summit was the resiliency of the patients in attendance.

They were there not because they had nothing better to do with their Saturday, but because they saw the summit as another opportunity to learn and explore other treatments for their cancer.

“Get knowledgeable and be your own advocate,” said Karen Koehler, a chronic lymphocytic leukemia survivor who credits immunotherapy for saving her life and getting her back on the golf course.

I sat at a table with two colon cancer patients, one at stage 3 and the other stage 4. They shared more than a diagnosis — they shared a thirst for life and a determination to live.

“Life is fun,” one of them eloquently put.

At lunch, I met a melanoma survivor who has embraced alternative therapies, and I chatted with another attendee about treatments available in Colombia and Panama.

Everyone at the summit had a different story and varying diagnoses, but a similar goal: To exhaust every resource available to extend survival.

The summit provided that opportunity to many of the survivors in attendance, connecting them with patient navigators to find eligible clinical trials.

Koehler and other survivors shared their immunotherapy journey to inspire and motivate other patients.

“For us, with the trial, there was no fear at all,” Koehler said. “We just knew it made so much sense to use your own body to help itself.”

Emergency Planning for Mesothelioma Caregivers

A few years ago, a significant snowfall left my family without power and with a limited supply of food.

My husband was without his diabetes medication for several days.

Some people might welcome the serenity of a beautiful blanket of fresh snow, but a caregiver without access to a patient’s medications might have a different perception of such a weather event.

During the storm, our roads were impassible, hindering access to my husband’s medicine.

After spending a few days without the diabetic supplies he needed, we decided to plan for the next time we found ourselves in a weather-related situation.

Mesothelioma patients may have immediate needs, especially during emergencies. Weather events and natural disasters can be unavoidable, but planning ahead reduces vulnerabilities in such conditions.

Take a Patient’s Individual Needs into Consideration

There is no shortage of information about emergency readiness on the internet.

A quick Google search yields hundreds of tips for planning ahead of wildfires, extreme weather and other disasters. The problem some caregivers face is understanding how to prepare for the specific needs of a patient.

The National Cancer Institute (NCI) offers emergency planning tips for cancer patients and their families. Caregivers may find it useful to incorporate some of these suggestions into their emergency care plans.

It is imperative to take a mesothelioma patient’s individual needs into consideration when planning for emergency situations.

Patient-Specific Considerations

According to NCI, emergency planning for cancer patients and their families should focus on the patient’s well-being.

People undergoing chemotherapy and other cancer treatments may have a compromised immune system, making them even more vulnerable during disaster situations.

Find an Immunotherapy Clinical Trial

Get free help finding a clinical trial using Keytruda for mesothelioma patients.

Find a Clinical Trial

Having a plan and access to medical information is essential for emergency accommodations for cancer patients.

The NCI suggests patients and caregivers discuss ways to access medical information in the event of an emergency. Many doctors offer online portals, or databases, which give patients access to their medical data from anywhere.

Despite having electronic access to medical information, the NCI still suggests having a paper copy of crucial information.

Some hard copy documents the NCI suggests keeping include:

  • Oncologist Information: It is beneficial to have the address and phone number of the treating oncologist. In disaster situations, patients may have to see a different doctor who might need to consult with the patient’s regular oncologist.
  • Specific Diagnosis: A disaster might limit or prevent communication between health care providers. If an emergency physician cannot access a patient’s medical information, knowing a specific diagnosis is a practical starting point.
  • Current Medications and Cancer Treatments: Patients and caregivers may find it difficult to recall each medication and the specifics regarding chemotherapy or radiation treatments. If electronic access isn’t possible, it is vital to have a hard copy handy for emergency professionals.
  • Clinical Trial Information: It is useful to carry a paper copy of information regarding participation in clinical trials. Emergency doctors may need the clinical trial number, the location of treatment administration, types of treatment administered, and contact information for the principal investigator.

Cancer patients have oncology-related needs caregivers must consider when planning for crisis situations. However, a loved one’s medical needs are just one element of a system of primary needs caregivers should address when creating an emergency plan.

Building an Emergency Care Kit

The U.S. Department of Homeland Security developed the website Ready.gov to help families plan ahead for crisis situations. They suggest creating a kit of basic supplies to use during an emergency event.

Whether planning for a natural disaster or just a power outage, caregivers should think ahead to keep their loved one as comfortable as possible.

Creating an emergency kit is an easy way to organize enough supplies to sustain your family for a couple of days.

Some suggested items to include in your kit:

  • Water: It is essential to include enough drinking water for each person in your family. A person will need one gallon per day and enough water for three days.
  • Food: Be sure to stock three days’ worth of non-perishable food items such as canned goods as well as other foods that have a water-tight seal. It is also useful to include a can opener and eating utensils.
  • Radio: A battery-operated communication device is important to keep informed about the current situation and future instructions. It is also a good idea to include extra batteries.
  • Cell Phone: Disaster events sometimes hinder communication. Having a cell phone, chargers and backup batteries can help keep families and loved ones connected during difficult times.
  • Flashlight: Having a flashlight is very handy during power outages. It is a good idea to stock extra batteries, too. Depending on the type of event, restoring electricity can be a long and challenging task.
  • First-Aid Kit: Even a simple first-aid kit can make a huge difference in emergency situations. Talk to your doctor about specific items you should include for you and your loved ones.

Preparing for emergency situations requires a personalized assessment of a family’s specific needs.

In my family’s kit, I included items necessary to meet our needs for several days. I added glucose tablets and peanut butter to help stabilize my husband’s glucose levels. I also included a few coloring books and a deck of cards to occupy our children.

Mesothelioma caregivers might add a few thoughtful items to ease patients through a difficult time. Some might find it helpful to include lip balm, calming essential oils or lotions. Little things have the potential to provide significant comfort during crisis events.

Emergency preparedness presents an opportunity for caregivers to think ahead. Life happens in real time, and emergency events seem to occur at the most inopportune times.

Planning can make an emergency less impactful on any family.

37-Year Mesothelioma Survivor Grateful for Alternative Therapy

Jerry Lampe often does his morning prayer in front of the bathroom mirror, lifted by the visual reassurance — and continued surprise — that he is alive and well.

Then another great day begins.

Lampe, 75, might be the country’s longest-living mesothelioma survivor, a beacon of hope who defied the odds of those diagnosed with the debilitating cancer.

Miracles do happen.

“I say my prayer of thanks for the privilege of another day,” Lampe told Asbestos.com. “It’s my way of not forgetting reality, but I often ask myself why [I am still alive]?”

Lampe, who lives near Kansas City, was diagnosed 37 years ago with peritoneal mesothelioma, discovered during a bowel obstruction surgery that turned into a six-hour cytoreduction to eliminate all visible signs of cancerous tumor cells.

Treatments Limited in 1980

The discovery was shocking, prompting post-operative consultations at M.D. Anderson Cancer Center in Houston, Memorial Sloan Kettering Cancer Center in New York and Roswell Park Cancer Institute in Buffalo, New York, where he heard a similar refrain each time.

They all told him, in different ways, the mesothelioma tumor cells likely would return with a vengeance, giving him six to 12 months to live.

This was 1980, well before peritoneal mesothelioma therapy had advanced where it is today. He was offered systemic chemotherapy, which he rejected after considering the short-term debilitating side effects and the lack of long-term effectiveness.

“I studied it, and found that patients who received treatment had a much rougher time, sooner than those who didn’t take treatment,” he said. “So I went home, figuring I’d just spend time with my wife and two children.”

The kids were 11 and 5 at the time.

Immunotherapy Treatment in the Bahamas

Lampe, who worked in the health care industry, had a friend who suggested the Immune Augmentation Therapy (IAT) Clinic in Freeport, Bahamas.

The controversial cancer-care clinic opened just three years before, treating cancers with the philosophy of restoring, revitalizing and fine-tuning a patient’s own immune system to fight off the tumor growth.

There was no radiation, surgery or chemotherapy there, only daily injections of a protein mixture made from the blood of healthy donors, individualized to augment a patient’s own immune system.

It was run by founder Dr. Lawrence Burton and medical director Dr. John Clement.

“I remember we asked [Burton] if he thought he could help me, and he said ‘I don’t know. We’ve never treated [mesothelioma] before,’” Lampe said. “For me, it was worth the try.”

Lampe stayed for five weeks of treatment initially, getting four to 10 injections daily. He typically would stay at the clinic for seven days, return home, and go back every eight to 10 weeks for more immune system adjustment.

He followed the routine from 1980 to 1984.

IAT Operated Outside of US Regulation

Although the theory behind the treatment was a precursor to today’s more accepted immunotherapy, IAT worked outside any regulation or oversight from the U.S. medical community.

Established oncologists often scoffed at mention of the clinic, and there was no scientific evidence proving it worked. Patients such as Lampe, though, believed it saved their lives, even while the U.S. Food and Drug Administration lobbied to close it.

Lampe helped Clement author a report in a British medical journal, detailing an improved survival rate for cancer patients who underwent treatment at the Freeport clinic.

“I don’t have any better explanation [why I’m alive today], other than divine intervention,” Lampe said. “I didn’t need proof beyond the fact I’m here today.”

Lampe left the clinic in 1985 and never returned. And neither did the mesothelioma tumors.

“It would be hard for me to give advice or recommendation to anyone else because so much has changed,” he said. “There is no way to prove now what it did or didn’t do for me back then.”

A changing philosophy, poor management and continued skepticism within the medical community essentially drove IAT out of business earlier this year.

Living an Active Lifestyle

Lampe starts each day with a prayer and an optimistic outlook. He retired a year ago from the physical therapy business.

He lives in rural Missouri on an 80-acre farm, much of which he rents to tenant farmers. Lampe often drives the Kubota tractor around the property, cutting grass and making sure all is well.

Lampe also teaches a class at nearby University of Saint Mary, along with another physical therapist.

Although he believes strongly in the theory of immunotherapy and strengthening the immune system to fight disease, Lampe stops short of offering any assurances for other mesothelioma patients.

“[IAT] built up my immune system, and I survived,” he said. “It seems like a short, logical road to conclude reasonably that it worked then. But that’s ancient history.”