Finances can become the deciding factor in which treatment a patient with cancer chooses to receive, where they receive it and if they can keep on that treatment regimen for an extended period of time.

It’s crucial for all patients to find the right treatment team and that may mean traveling further from home for days or even weeks. For patients with mesothelioma, being treated at a large academic cancer center is key since this disease is rarer than other cancer types.

Certain organizations across the country have financial assistance programs to help. For instance, Cancer

, the leading national organization providing free, professional support services and information to those affected by cancer, has a new program that exclusively offers assistance to patients with mesothelioma.

Once a patient is interviewed by phone and completes a financial application, they are eligible to receive a portion of grant money from the Mesothelioma Transportation Assistance Program that can be used for services such as air travel to a treatment facility, lodging and airfare.

Francine Shuman is thankful she qualified for this help as she has to travel from Augusta, Georgia, to Atlanta, to receive treatment at Winship Cancer Institute of Emory University, which requires driving two hours one way from her home to the cancer center, as well as staying overnight a few days in a hotel. “I’ve got bills to pay. I can’t afford it,” she says.

Shuman received a peritoneal mesothelioma diagnosis in February 2020 and after undergoing chemotherapy, she recently had surgery to remove the cancer that develops in the lining of the abdomen. She believes her cancer was caused by years of inhaling talcum powder that she used on her three daughters as babies. Talc is a mineral that can absorb moisture and because it’s found in close proximity to asbestos — a known carcinogen — in the earth, there is concern that talc can become contaminated.

After calling several organizations, Shuman finally connected with Cancer

and through the program, Shuman received a $1,000 grant for expenses. “I was told I would get the loan and I wouldn’t have to pay it back. And I just thanked the Lord because I didn’t know how I was going to get back and forth,” she says.

To initiate the process for the Mesothelioma Transportation Assistance Program, the person who received the diagnosis or a caregiver can call Cancer

’s HOPEline at 1-800-813-4673 or email Charlotte Ference, a social worker, at 

For more news on cancer updates, research and education, don’t forget to

Articles

Side Note

A new grant program offers financial assistance for patients with mesothelioma who must travel for cancer care.

Making Cents of Mesothelioma

KAREN “K” LATZKA, a non-small cell lung cancer survivor, says quickly found herself on the defensive following her cancer diagnosis. - PHOTO COURTESY OF: KAREN LATZKA

When Karen “K” Latzka developed a cough that wouldn’t go away, the Kaneohe, Hawaii, resident didn’t give much thought to her former cigarette smoking days. After all, it had been a decade since she last lit up. “I had forgiven myself for poisoning my body and was hiking and enjoying an active lifestyle,” Latzka says. “My lungs felt great!”

But in 2010 at age 46, Latzka learned she had stage 3 squamous cell lung cancer, a type of non-small cell lung cancer commonly seen in smokers. Still reeling from the diagnosis, Latzka quickly found herself on the defensive, constantly fielding the inevitable question that every person with lung cancer dreads: “Did you smoke?”

At first, Latzka shouldered the shame and blame ingrained in that question. “I thought I deserved people’s disdain, that my years of nicotine addiction meant that I wasn’t worthy of compassion,” she says. It was a very dark time for Latzka, and people’s reactions didn’t help.

Quickly, though, she came around to the idea that she didn’t deserve that burden. “No other patient with cancer is so overtly blamed for their disease in most every encounter after their diagnosis,” she says. “I deserved compassion.”

Smoking and lung cancer have been inextricably linked since the U.S. Surgeon General’s landmark report in 1964 detailed, for the first time, the now well-known health risks of tobacco use. “The valuable information in this report has saved thousands of lives by encouraging people to quit smoking and keeping others from ever starting,” says Carly Ornstein, national director of lung cancer education at the American Lung Association.

Unfortunately, according to Ornstein, an unintended consequence is that the findings cemented in the public’s mind the idea that only smokers get lung cancer. In reality, approximately two thirds of lung cancer diagnoses are in never smokers or former smokers, although the majority of these are former smokers. “The fact is that it is not always clear what causes a person’s lung cancer or any other cancer,” says Ornstein. “But, what is clear is that all patients with lung cancer deserve support.”

Genetic mutations may be to blame for certain lung cancer cases. Other potential risk factors include exposure to chemicals, such as asbestos, arsenic or secondhand smoke. The Centers for Disease Control and Prevention (CDC) estimate that radon, a radioactive, odorless gas naturally found in soil, contributes to 20,000 new cases of lung cancer every year, making it the second-leading risk factor for the disease.

Furthermore, even among smokers and former smokers, there’s mystery surrounding why some get lung cancer and others don’t. It’s not a simple cause-and-effect equation.

Regardless of whether there’s a history of tobacco use, people with lung cancer face stigma. A survey conducted by The Lung Cancer Project found that 3 in 4 respondents think negatively about patients with lung cancer. Sadly, this includes caregivers and health professionals. In another survey, from the American Lung Association, up to 45 percent of respondents felt that smokers who develop lung cancer either deserve it, should have known better or should have quit sooner.

This thinking doesn’t address the fact that anyone with lungs faces some risk of lung cancer. It’s true that smokers, both current and past, bear the heaviest burden of this life-threatening disease, but no one who has lung cancer is immune to the stigma that shadows it.

Studies have found that patients with lung cancer report higher levels of distress — both social and emotional &mdash; compared with other cancer groups. These findings are based on questionnaires and Distress Thermometer results. Patients with lung cancer also have more problems opening up and talking with loved ones and health professionals, perhaps because they feel responsible for their situation. As a result, relationships suffer.

High levels of shame and guilt can lead to feelings of isolation and despair. The stigma from the disease even keeps some people from seeking medical treatment or getting help for their depression. At a time when a shoulder to lean on is so crucial, many people close themselves off from the family and friends who most want to help.

San Diego resident Barry Davis knows firsthand how this feels. His typically rosy outlook on life shifted 10 years ago when he received a diagnosis of adenoid cystic carcinoma, a rare form of lung cancer, that was already guessed by his oncologist to be stage 3. “I was a 47-year-old avid runner who never smoked,” he says. Davis’ spirits sank even more when he learned that the five-year survival rate for lung cancer was less than 20 percent.

As Davis began radiation and chemotherapy treatments, he worried about how his diagnosis and care would affect his wife, daughter and loved ones. In a misguided attempt to protect those he loved, Davis started shutting them out. “Lung cancer packs a one-two punch: There’s a low survival rate, plus a widespread misperception that the disease is self-inflicted. Your first reaction is to ask everyone to leave you alone,” says Davis, who slipped into a state of depression for months after his diagnosis.

His wife, though, refused to let him wallow for long. “She knew that I was the type of person who benefits from taking action,” Davis says. “She signed me up for a 5K (run) fundraiser for Free to Breathe, a nonprofit organization dedicated to finding new lung cancer treatments. She coaxed me into getting involved with support groups, both local and online,” he says. Davis now regularly gives educational talks about lung cancer for his local Free to Breathe chapter.

Some degree of sadness and grief is to be expected following any cancer diagnosis. A loved one may need professional help for depression — perhaps in the form of counseling or antidepressant medications &mdash; if he or she stops participating in favorite activities, gives up on treatment or becomes easily irritated and angry, says Win Boerckel, lung cancer program director for CancerCare, a national organization based in New York City that provides free professional support services for people with cancer. “Patient navigators at treatment centers can connect patients and loved ones with local and online support resources,” he says.

Figuring out when to coax someone to talk and when to give them space is tricky. Also challenging is finding the right words to say. Here, lung cancer experts and those battling the disease offer these tips:

 Just about everyone knows some-one who has battled some type of cancer. Even if you have a “success” story to share — don’t. And especially stay quiet if the story doesn’t have a happy ending. “We’re already looking at a dismal survival rate for lung cancer,” says Davis. “We don’t need to hear horror stories about treatment side effects or people who didn’t make it.” Your mission is to spread hope, not fear.

 Unless you have a medical degree or training, don’t offer advice about herbal remedies or alternative treatments that you found online. “It’s fine to ask ‘What are you planning to do?’ But the next step is to listen and be a friend. Don’t play doctor,” says Davis.

 An open-ended “Let me know if there’s anything I can do” can overwhelm someone who is undergoing treatments. “Expecting someone who isn’t feeling well to give you instructions just adds to their burden,” says Ornstein. Instead, take the initiative. “A friend rang my doorbell one night, greeted me with a still-warm jar of homemade spaghetti sauce and a box of spaghetti, then turned around and left. It was perfect!” says Latzka. Consider calling your loved one from the grocery store and asking what items you can pick up, choose a day to do yard or house work, or serve as chauffeur for the day.

 After Kristi Kamada was diagnosed with lung cancer last year, a friend worried that she would annoy or upset her by asking how she was feeling. “Because my friend was open and honest, I was able to tell her that I wouldn’t mind if she asked me that question every day. It’s nice to know she’s thinking about me,” says Kamada, who lives in Anaheim Hills, California. Of course, not everyone will feel the same, which is why it’s important to ask when you’re uncertain.

 When someone first receives a cancer diagnosis, there’s a surge of support. But the cheerleading, meals and offers of help can wane over time. “It’s important to remember that people with lung cancer are going through long-term treatments that can be hard on the body and spirit,” says Boerckel. Every morning, Kamada gets a boost from an inspirational text sent from a friend. Another friend sends cards each week. “It is so uplifting to know that my friends are caring for me months after my diagnosis,” she says.

 Your mannerisms and nonverbal communication are every bit as important as your words. “It’s important to make eye contact when you’re talking about something as serious as cancer. When you look away you imply that you’re scared or uncomfortable,” says Cara Fairfax, a patient navigator and clinical social worker at the Douglas & Nancy Barnhart Cancer Center at Sharp Chula Vista Medical Center in Chula Vista, California. Also, don’t be afraid of silence. “Just sitting with someone, holding their hand, rubbing their shoulders or offering a comforting shoulder to lean on is extremely powerful and very much appreciated.”

Features

What to say and what not to say to a loved one impacted by cancer.

Speaking the Language of Lung Cancer

Surgical resection appears to be the most effective treatment for early stage non-small cell lung cancer. New research shows that patients with lung cancer facing a curative surgery may be able to help themselves ensure a better outcome with simple perioperative — care before, during and after surgery &mdash; rehabilitation techniques, including a slow exercise routine and breathing awareness exercises.

In fact, several recent studies determined that perioperative pulmonary rehabilitation improves ultimate functional capacity and reduces postoperative complications, as well as enhances recovery in operated patients. However, the optimal intervention tailored to patients with lung cancer, either pre- or post-surgery, has yet to be established.

For patients undergoing lung resection for cancer, it has been shown that stress, anxiety, depression and fear are associated with worsening quality of life following the surgery. Those same risk factors have been found to be associated with poorer outcomes in patients with chronic obstructive pulmonary disease (COPD) — a lung disease related to cigarette smoking that usually coexists with lung cancer.

There is an urgent need for additional high-quality studies to identify comprehensive rehabilitation interventions that can target not only the physical but also the emotional aspects of surgically treated patients with non-small cell lung cancer and COPD.

With that knowledge gap in mind, we completed a pilot study of a feasible two-week preoperative intervention that included an intervention intended for emotional balance: mindfulness.

Mindfulness is the awareness that arises from paying attention to the present moment. The practice of mindfulness has been associated with emotional well-being and better control of pain, which are two attributes known to be important in postoperative recovery. The intervention results suggested an improvement in important postoperative outcomes such as length of hospital stay and accelerated lung re-expansion, or less time with chest drainage.

The emphasis was not on the exercises used, per se — in fact, they were similar to those done in traditional rehabilitation programs &mdash; but on the level of awareness of the body and the breath while doing them. In other words, mindfulness.

Adding stress reduction to rehabilitation programs is not unique to preoperative rehabilitation; recent reports have indicated its beneficial effects in cardiac rehabilitation. But it is a relatively novel concept for lung surgery rehabilitation.

With funding from the National Institutes of Health and the National Cancer Institute in collaboration with the Alliance for Clinical Trials in Oncology, we are launching a large study that tests a mindfulness-based preoperative rehabilitation for patients undergoing lung cancer resection. Outcomes of the study will be daily quality of life after surgery, which will be measured by validated tools, as well as the length of hospital stay and number of postoperative complications.

With recruitment targeted at 200 patients, the study will be large enough to provide answers about how to promote wellness in the preoperative and postoperative states, as well as how to help reduce the burden of surgery. The intervention will include six to ten visits to the center in a two to three-week period before a patient’s lung resection.

Simple mind-body practices like meditation and body awareness will be part of the rehabilitation routine, as will walking and upper extremity exercises done in a very slow, attentive way. Patients will follow a dedicated video as they exercise to assure not only compliance but also uniformity of the intervention across the many sites — both small and large hospitals will be participating.

In essence, we are seeking to innovate by adding mindfulness to exercise rehabilitation. We hypothesize that it will improve overall wellness during and beyond the operative intervention, and that the comprehensiveness and patient-centeredness of the approach will also affect health care outcomes and become an accepted intervention prior to curative lung resection. We hope that this simple, yet profound, intervention becomes standard of care once rigorous science proves it to be beneficial.

Speaking Out

A recent study looked at a two-week preoperative intervention for lung cancer resection that included an intervention intended for emotional balance: mindfulness.

Adding Mindfulness: Innovation for an Optimal Preoperative Rehabilitation Before Lung Cancer Resection

DINA LEONARD, non-small cell lung cancer, recalls her experience with adjuvant chemotherapy. - PHOTO BY: TRACEY SPERO

When Dina Leonard had her first surgery for non-small cell lung cancer (NSCLC) in 2007, advice was still mixed as to whether post-surgery adjuvant therapy — be it chemotherapy alone or followed by radiation &mdash;  would help reduce the risk of recurrence. Adjuvant therapy is a term used for treatments intended to address residual microscopic tumor cells that could later spread, and that therefore, if successful, lower the risk of recurrence and death from cancer. In Leonard’s case, her tumor was isolated and smaller than 3 centimeters, so her surgeon and oncologist agreed that adjuvant chemotherapy wasn’t necessary. At age 41, Leonard, of Long Island, New York, was anxious to have the tumor removed, so she could get back to work as a graphic designer and to caring for her daughter, then three years old.

“The tumor was in the lower lobe of the right lung,” Leonard recalls. “They could take out a slice and it would be gone and we would be back to normal.”

When doctors removed another small, isolated tumor in 2009, they again agreed that adjuvant chemotherapy and radiation were unnecessary. Leonard — who had never smoked &mdash; enjoyed several years with no evidence of disease. But when the cancer came back in 2012, the rules had changed. Oncologists were beginning to understand then, as they know now, that adjuvant chemotherapy after tumor removal (resection) increases survival rates in operable NSCLC. Adjuvant platinum-based chemotherapy after resection is now standard procedure at certain stages. Meanwhile, ongoing studies aim to uncover additional therapies as well as ways to help identify the best candidates for each option.

“We need to find a better way to relay the benefit of perioperative chemotherapy to our patients,” says Jamie Chaft, M.D., a medical oncologist at Memorial Sloan Kettering Cancer Center (MSK) in New York City. “Supportive care for chemo-therapy side effects has gotten much better, and people aren’t getting nearly as sick as they did when [adjuvant chemotherapy methods] were [first] studied 20 years ago. So even a small reduction in the risk of recurrence may warrant treatment. We hope that with lung cancer screening and better drugs and drug delivery, with adjuvant chemotherapy now or immuno-therapy in the future, we can save more lives.”

Five-year survival rates for operable NSCLC with surgery alone depend on cancer stage and the person’s overall health. For stages 1 and 2, for example, when the tumor is completely removed, five-year survival rates range from 60 to 80 percent. Postoperative, or adjuvant, chemotherapy in operable NSCLC increases those five-year survival chances by about 5 percent.

In the biggest clinical trials that demonstrated the benefits of postoperative chemotherapy, most patients received cis-platin plus vinorelbine, and so, many doctors select that co-bination. But other drugs combined with cisplatin, such as Alimta (pemetrexed), the taxanes paclitaxel and docetaxel, and some vinca alkaloids, perform just as well.

“It’s not that the vinorelbine combination is the best; it’s just the one that was most rigorously tested,” says Taofeek Owonikoko, M.D., Ph.D., a medical oncologist at Emory Winship Cancer Institute in Atlanta.

Studies show that postoperative platinum-based chemotherapy brings the greatest benefits to patients with resected stages 2 and 3A NSCLC. The therapy doesn’t seem to impact significantly on long-term prognosis for patients with earlier stages of the disease, which for them is already quite good.

When Leonard had a recurrence in early 2012, she was stage 3A-N2, which means the cancer had spread to nearby lymph nodes. In this situation, patients might benefit from adjuvant chemotherapy followed by radiation of the lymph nodes after surgery.

“Involvement of the lymph nodes around the root of the lungs and the center of the chest means there’s a higher risk that the cancer will come back. Giving radiation following surgery and chemotherapy when there is involvement of central lymph nodes seems to further reduce the chance of cancer coming back and ultimately improves survival,” Owonikoko says.

Leonard had her right lung removed and then received four rounds of cisplatin plus docetaxel, a platinum-based chemo-therapy combination, followed by a 20-day course of radiation.

Limited evidence suggests that postoperative chemotherapy might also offer benefits to some patients at stage 1B, but results are mixed. Patients at stage 1B whose tumors are larger than 4 centimeters seem to be the best candidates, according 31to Owonikoko. With lower stages, the very small improvements in recurrence rates have to be balanced against the side effects —  it is hard to draw a precise, firm line to decide who should, and who should not, get adjuvant chemotherapy.

Of course, disease stage alone doesn’t determine whether adjuvant therapy is the right choice. A patient must be healthy and strong enough after lung surgery to withstand chemotherapy, which can have harsh side effects such as anemia, fatigue, vomiting, nausea and hair loss. Traditionally, doctors recommended that therapy start within six to nine weeks of surgery. However, a later start, for patients who are not well enough in six weeks, fortunately doesn’t have a negative effect on prognosis, according to a recent study in JAMA Oncology.

“There was a common perception that chemotherapy given outside of that window was not as likely to work, and that’s a problem because a fair number of patients recover slowly from lung cancer surgery,” says Daniel Boffa, M.D., a thoracic surgeon at Yale School of Medicine’s Smilow Cancer Hospital in New Haven, Connecticut, and senior author of the study. “Often, patients and their oncologists are put in a situation where they struggle to balance recovery from an operation with the urgency to get chemotherapy.”

The study, which Boffa co-authored with Yale visiting research scientist Michelle Salazar, M.D., found that adjuvant, multiagent (more than one drug) chemotherapy was just as beneficial to eligible candidates who started it 18 weeks after surgery as it was to those who started seven weeks post resection. Patients who started on the later end of the spectrum still had better overall survival rates than patients who had surgery alone.

“We’re not saying that it doesn’t matter when you give chemotherapy, because our study could miss a subtle benefit to giving chemotherapy earlier. We’re saying it’s OK to give chemotherapy later if for some reason you weren’t able to get it during that traditional window,” Boffa says.

“It is difficult to gauge how many patients could benefit from this flexibility in chemotherapy timing,” adds Boffa. “Whether it is 50 or 5,000, I have little doubt there will be people who will live longer because of this observation, which should be credited to the American College of Surgeons and the American Cancer Society. They co-sponsor the National Cancer Database, which made the study possible.”

Adjuvant chemotherapy can benefit women and men of any age who are healthy enough and at the appropriate stage. Older age should not deter an adequately strong person from adjuvant therapy.

Doctors hope one day to have a test to determine the odds that a patient would benefit from a given treatment before it is offered. For instance, patients with tumors that express a protein called ERCC1 might not benefit from chemotherapy. However, tests for the protein are not extremely reliable as they frequently yield both false positives and negatives. Researchers continue to search for other biomarkers that might aid in treatment decisions.

The benefits of adjuvant chemotherapy in NSCLC come with risks of unpleasant side effects and toxicity. Leonard admits that the four cycles of cisplatin plus docetaxel made her pretty sick. “The side effects were as expected,” she recalls. “Extreme fatigue, nausea, loss of appetite and hair loss.”

Leonard and her husband, Tom, a tireless member of her care team, learned to anticipate and plan for her best and worst days. “She’d have a week of feeling bad,” he says. “Then a week of feeling better, then a week of feeling well.”

“But by the end of 2012,” she notes, “I had gotten most of my strength and stamina back and just resumed periodic CT scans.”

Neutropenia (low white blood cell count) is the most common side effect of adjuvant chemotherapy. When accompanied by fever, the condition is called febrile neutropenia. Besides these, the symptoms Leonard experienced — nausea, vomiting, extreme fatigue or weakness &mdash; are among the most common side effects. The treatment might also cause constipation and neuropathy (painful, numbing nerve damage). A rare side effect is loss of platelets, known as thrombo-cytopenia, which can cause bruising and slow the blood-clotting process.

In most cases, within about nine months, patients feel like they did before they started chemotherapy, a pattern Leonard followed. Nerve pain, however, can linger.

In rare cases, about one percent of the time or less, a complication during chemotherapy can result in death. “Patients at greatest risk for toxicity and death are those with significant other illnesses,” says Owonikoko. “That’s why you want to care-fully screen patients to make sure they are able to withstand the potential side effects of treatment.”

Because adjuvant chemotherapy for NSCLC isn’t perfect and doesn’t guarantee a cure, researchers continue to explore treatments that might work better, with fewer side effects, and to probe into better ways to predict who will respond well to which treatment.

Immunotherapy, medication that helps the immune system fight disease, has brought benefits to patients with many different types and stages of cancer. Researchers are beginning to explore the potential benefits of four such drugs — Opdivo (nivolumab), Keytruda (pembrolizumab), Tecentriq (atezolizumab) and durvalumab &mdash; as adjuvant therapy in operable NSCLC. Each of these drugs is a type of PD-1/PD-L1 check-point inhibitor, which means they release the brakes on the immune system so it can mount an attack against the cancer. Initially, the adjuvant studies will examine the effects of these drugs in addition to chemotherapy, not in lieu of it.

“While these studies are underway and actively enrolling patients around the world, the nature of adjuvant investigation is that it requires recurrences to define success or failure, so the results aren’t anticipated for many years,” says Chaft.

Each of these drugs is also currently under investigation as a treatment option for advanced, inoperable lung cancers.

Targeted therapies, medications that disable a specific genetic mutation in the tumor that helps it grow, might also be a viable adjuvant therapy in operable NSCLC. Different tumors express different cancer-promoting mutations; therefore, researchers are testing medications aimed at various targets.

In the currently recruiting ALCHEMIST trial, for example, researchers test lung tumors after removal for expression of epidermal growth factor receptor (EGFR). Those whose tumors test positive receive an EGFR-blocking drug, Tarceva (erlotinib). If study participants have a gene mutation called an ALK rearrangement, which also promotes cancer growth, they receive a drug that targets that: Xalkori (crizotinib). Among the people who have neither one of those tar-gets, half will receive immunotherapy in the form of a PD-L1 inhibitor and half will not. All tumors will be examined for additional mutations that could be future drug targets.

“It’s a great study that combines both what we know about genetic abnormalities and their role in personalized adjuvant therapy, as well as a learning phase to identify future targets for treatment by genetically profiling surgically managed tumors,” Boffa says.

Leonard’s tumors express a cancer-promoting element most often seen in breast cancer called HER2. Ten years after her initial diagnosis, she is not disease-free, but the cancer now seems to be well controlled with the HER2-targeted drug Kadcyla (adotrastuzumab emtansine) that she receives through a clinical trial at MSK.

Since she began receiving infusions of the drug, periodic CT scans have shown significant shrinkage of the cancer lesions. She manages the fatigue that the medication causes and presses on.

“I’m tired, but I have a 13-year-old daughter,” says Leonard. “I have places to take her and things to do. I want to enjoy my husband and daughter as much as I can. They get me through it, no question.”

How patients with operable non-small cell lung cancer are faring after tumor resection.

Adjuvant Therapy: Should You Receive It?

NINA BEATY, a small cell lung cancer survivor, says she is alive because of immunotherapy.

Nina Beaty was one of the last patients to enroll in a clinical trial testing immunotherapy for the treatment of small cell lung cancer (SCLC) in May 2015 at Memorial Sloan Kettering Cancer Center (MSK) in New York City, where she resides. Now, she credits the trial for saving her life. The trial tested the drug Opdivo (nivolumab), an immune checkpoint inhibitor that blocks a pathway in cancer cells called PD-1, which is a protein that prevents T cells from recognizing and attacking cancer cells.

In Beaty’s case, within four weeks of initiating treatment with Opdivo, the 63-year-old woman’s tumor had shrunk by almost half. Now, nearly two years later, she continues to do well.

“When my oncologist saw my results, she was amazed,” Beaty recalls. “She gave me a huge hug out of sheer joy when sharing the news. I’ll never forget that moment of celebration for all of us in the room.”

Immunotherapy treatments, another class of drugs called PARP inhibitors and a DLL3-targeted antibody-drug conjugate called Rova-T (Rovalpituzumab tesirine) are among a group of new therapies showing early promise in clinical trials for the treatment of patients with SCLC, a disease that has had little improvement in prognosis in the last 25 years.

Small cell lung cancer, the most aggressive form of lung cancer, is named for the small, oval-shaped cancer cells seen under a microscope. It accounts for about 10 to 15 percent of all lung cancers in the United States.

Unlike non-small cell lung cancer, it spreads earlier and is often diagnosed at a time beyond the point where surgery could be considered — leaving chemotherapy as the only standard option. SCLC usually starts in the bronchi, and then quickly grows.

“In the patients who come to see me in clinic with SCLC, they describe having developed symptoms quickly, with a significant change in their normal activities in a short period of time,” says Lauren Averett Byers, M.D., assistant professor in the Department of Thoracic/Head and Neck Medical Oncology at The University of Texas MD Anderson Cancer Center in Houston.

Most lung cancers do not cause any symptoms until they have spread, but some patients with early lung cancer do have symptoms. Among the most common symptoms seen in patients with SCLC are worsening cough, shortness of breath and labored breathing. However, SCLC can also be diagnosed incidentally on chest imaging with patients experiencing no symptoms at all, as was the case with Beaty. The disease occurs more commonly in people with a history of smoking, but there are rare cases in individuals who have never smoked. Once SCLC is discovered, it is typically classified as either limited stage — disease confined to one side of the chest &mdash; or extensive stage &mdash; where tumors have spread to the opposite side, or beyond the chest.

Patients with limited-stage disease, representing about 40 percent of all diagnoses, can be treated with radiation to the chest, chemotherapy or surgery, and have a median survival of 16 to 24 months. In patients with extensive-stage disease, the disease has become too sizeable for radiation treatment, Byers explains. These patients are usually treated with chemotherapy alone, and have a median survival of between 6 and 12 months.

Due to the high rate of brain metastasis, a technique called prophylactic cranial irradiation (PCI) is a standard treatment for all patients with SCLC who respond to chemotherapy. PCI has been shown to improve survival to a significant degree in patients with either limited or extensive stage disease. However, it may be best to use in younger patients, because some study results have shown PCI-related neurotoxicity, such as dementia or walking disturbance, more frequently in older patients.

When Beaty learned about her SCLC, she was diagnosed with limited-stage disease and underwent traditional treatment with platinum-based chemotherapy and radiation. Her cancer responded to treatment, but within a year her follow-up imaging scans showed that her original tumor was growing back, and the disease had spread to other parts of her body.

“SCLC is a type of cancer that responds well initially to chemotherapy and radiation,” Byers says. “Often we see a lot of shrinkage from the treatment and patients notice an improvement in symptoms, but the challenge remains that for almost all patients, the disease is going to come back at some point.”

Only about 10 percent of patients with SCLC remain disease-free two years out from the start of therapy.

Knowing that she was running out of options, Beaty’s doctors referred her to MSK to enroll in a clinical trial testing experimental therapies.

For years, researchers have sought more effective treatments for patients whose SCLC has progressed after their initial treatment, says Charles M. Rudin, M.D., Ph.D., chief of the Thoracic Oncology Service at MSK.

Currently, topotecan is the only FDA-approved therapy for recurrent SCLC. The chemotherapy drug has been shown to improve overall survival, quality of life and symptom control, compared with best supportive care.

“A number of other drugs are currently being used for these patients that have been adopted by the National Comprehensive Cancer Network guidelines, including drugs like temozolomide, and, more recently, a combination immunotherapy regimen of the drugs Opdivo and Yervoy [ipilimumab],” Rudin says.

The combination of Opdivo and Yervoy has been tested in several other solid tumors and has shown improvements in outcomes for certain patients.

To treat her cancer, Beaty was enrolled in a trial for patients with SCLC who had their tumors progress after prior therapy. Called CheckMate-032, it tested Opdivo alone or in combination with Yervoy, which is a different type of immunotherapy called a CTLA-4 inhibitor. Beaty was treated on the Opdivoalone arm. Published results of the CheckMate-032 study showed that both Opdivo alone and with Yervoy had antitumor activity in patients with relapsed SCLC.

These results were similar to those from another trial also testing Opdivo with or without Yervoy that also showed that Opdivo alone or in combination with Yervoy was associated with antitumor activity and durable responses.

The KEYNOTE-028 trial tested another immune checkpoint inhibitor, Keytruda (pembrolizumab), in patients with advanced-stage SCLC that is positive for PD-L1, a ligand on the immune and tumor cells that normally binds to the drug’s target. About one-third of patients treated with Keytruda in the study had their tumors respond to treatment.

While they show promise, immunotherapy drugs can cause serious side effects, and patients on these treatments need to be carefully monitored. Nonetheless, in most patients, they are well tolerated, with severe side effects seen less frequently than is typical with chemotherapy, according to Rudin. Many toxicities that do occur are specific to treatment with immunotherapies and the stimulation of the immune system.

Although these side effects can be serious, they can usually be managed in patients with close follow-up, he adds.

“The real excitement with immunotherapy, in my mind, is when we do get responses, they can, in some cases, be quite durable,” says Rudin, who treated Beaty on the CheckMate-032 clinical trial. “Nina is coming up on two years of treatment. She has an excellent quality of life and a continued remarkable response.”

However, most patients with SCLC, like those with many other tumor types, unfortunately do not currently respond to immunotherapy. In the CheckMate-032 trial, the objective response rate was only 10 percent for patients treated with Opdivo alone, and about 21 percent for the combination group. For those patients who do respond, clinicians do not yet know the optimal duration of immunotherapy treatment. For example, Beaty has been told that she may need to continue to undergo immunotherapy infusions in the foreseeable future.

“We do have patients who have had to go off of immunotherapy because of adverse effects whose tumors have remained in remission, in rare cases for many years,” Rudin says. “We are always a bit afraid to quit when patients have good success and tolerance to a drug.”

Researchers continue to conduct studies of immunotherapy treatments in order to identify which patients will respond to therapy and to find ways of getting more patients to respond.

Another exciting area of research for patients with SCLC is the use of PARP inhibitors. A PARP inhibitor is a drug that blocks an enzyme in cells called poly ADP ribose polymerase, which helps repair DNA when it becomes damaged. For patients with cancer, blocking PARP may help keep cancer cells from repairing their damaged DNA, consequently causing the cancer cells to die.

“In early studies, we found that SCLC has high levels of the protein PARP, and when we block it with a drug that inhibits PARP, that small cell dies,” Byers says.

One preclinical study conducted by Byers and colleagues showed an equal decrease in growth of SCLC cells using a PARP inhibitor as is seen with standard chemotherapy. When used together, the two approaches may work even better, says Byers. In another recent study, Byers, Rudin and colleagues tested a PARP inhibitor called veliparib. Patients with previously treated SCLC were treated with the chemotherapy drug temozolomide with or without veliparib. The combination increased response rates almost threefold compared with chemotherapy alone.

“We also found biomarker testing that could help us predict who would get the most benefit from a PARP inhibitor,” Byers says.

She and colleagues at MD Anderson Cancer Center, as well as several other cancer centers, continue to design and launch clinical trials investigating PARP inhibitors in patients with SCLC, along with tests to identify patients mostly likely to respond, in the hopes of getting at least one PARP inhibitor approved for the standard care of patients with relapsed SCLC.

Research into immunotherapies, PARP inhibitors, and other new treatments continue to provide promising new approaches to the treatment of SCLC, and hope to patients living with the disease.

Beaty acknowledges that she has beaten the odds by surviving almost two years since her SCLC spread outside of her chest. As a way of giving back, she has applied her background as an art therapist to work with patient support groups that help provide guidance and support to other patients with SCLC.

One of the most encouraging resources she found is a group called Imerman Angels, which provides one-on-one cancer support. Through the group’s website, patients can fill out a support request form where they can enter information such as their diagnosis, age and gender. They are then matched with someone to speak with, who has dealt with the same or similar diagnosis, about their personal diagnosis and journey.

“As a newly diagnosed person, you hear that the average survival is 3 to 6 months, and you look to find other patients with a similar experience as you and discover that there aren’t many around,” Beaty says. “A couple of weeks after contacting Imerman Angels a man called me and said he had SCLC and had survived two years. Hearing that surviving two years was possible made me burst into tears. It was the first time that I was given some hope and realized that I might have a future after all.”

Now, Beaty is the survivor, and she credits it all to immunotherapy.

Treatment options on the horizon offer hope to patients with small cell lung cancer.

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