Tislelizumab extends OS in advanced esophageal cancer

Tislelizumab extended OS compared with chemotherapy for patients with previously treated advanced esophageal squamous cell carcinoma, according to topline data released by the agent’s manufacturer.
Tislelizumab (BGB-A317, BeiGene) is humanized immunoglobulin G4 anti-PD-1 monoclonal antibody designed to minimize binding to Fc gamma receptors on macrophages.
The randomized phase 3 RATIONALE 302 trial included 512 patients from North America, Europe or Asia with advanced unresectable or metastatic esophageal squamous cell carcinoma who received prior systemic treatment.
Researchers assigned patients to tislelizumab or the investigator’s choice of paclitaxel, docetaxel or irinotecan. The trial met its primary endpoint, with results showing a statistically significant improvement in OS with tislelizumab in the intention-to-treat population. Tislelizumab exhibited a safety profile consistent with prior reports. Researchers observed no new safety signals.

“Esophageal cancer represents a significant unmet medical need with rapid progression and high mortality,” Lin Shen, MD, vice president of clinical oncology at Beijing Cancer Hospital and lead investigator for the RATIONALE 302 trial, said in a BeiGene-issued press release. “Recent years have seen a paradigm shift in advanced [esophageal squamous cell carcinoma] treatment from chemotherapy and radiation to immunotherapy. The positive topline results from the RATIONALE 302 trial demonstrated that tislelizumab may offer a new treatment option for those living with this devastating disease and bring hope to patients and their families.”

Complete results of the trial will be submitted for presentation at a medical conference and shared with health authorities.

“This is our fourth positive phase 3 readout for tislelizumab and the first from our large phase 3 program in gastrointestinal cancers,” Yong (Ben) Ben, MD, chief medical officer for immuno-oncology with BeiGene, said in the release. “With our ongoing evaluation of tislelizumab across multiple tumor types, we are working to provide clinical evidence and bring this potentially differentiated anti-PD-1 antibody to far more patients around the world.”

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Germline whole exome sequencing reveals potential role of hereditary predisposition in small cell lung cancer

A study presented today by Dr. Nobuyuki Takahashi of the Center for Cancer Research (CCR), National Cancer Institute (NCI), Bethesda, Md. at the IASLC World Conference on Lung Cancer Singapore demonstrates that small cell lung cancer (SCLC) may have an inherited predisposition and lays the foundation for understanding the interaction between genotype and tobacco exposure in exacerbating SCLC risk as well as potential therapeutic implications. Because tobacco is the dominant carcinogen, secondary causes of lung cancer are often diminished in perceived importance, especially in SCLC, the most lethal lung cancer. SCLC is almost exclusively related to tobacco and comprises 15% to 20% of all lung cancers.
The study was conducted by researchers at the NCI CCR including Drs. Takahashi, Camille Tlemsani, and Lorinc Pongor, and led by Dr. Anish Thomas of the Developmental Therapeutics Branch. To explore the genetic basis of SCLC, they sequenced germline whole exomes of 87 patients (77 with SCLC, 10 with extrapulmonary small cell) and compared these with an independent SCLC cohort and with cancer-free non-Finnish European individuals from the Exome Aggregation Consortium (ExAC) cohort. They also evaluated clinical characteristics associated with the germline genotype.

Among 607 cancer predisposition and SCLC-related genes, the researchers discovered 42 deleterious variants in 35 genes among 38 (43.7%) of patients. Identification of variants influenced medical management and family member testing in 9 (10.3%) patients. Six germline mutations were also found in the independent cohort of 79 patients with SCLC, including three of the same variants (MUTYH G386D, POLQ I421Rfs*7, and RNASEL E265X). By tumor whole-exome sequencing they confirmed the loss of heterozygosity of MLH1, BRCA2, and SMARCA4 genes.

Consistent with the contribution to potential cancer predisposition, patients with MLH1, BRCA2, and MUTYH germline mutations had multiple personal and family histories of cancer and lung cancers including SCLC. Unselected patients with SCLC in the cohort were more likely to carry germline RAD51D, CHEK1, BRCA2, and MUTYH mutations than healthy controls in the ExAC cohort. Pathogenic germline mutations were significantly associated with the likelihood of first-degree relatives with cancer or lung cancer (odds ratio: 1.82, 2.60, respectively) and longer recurrence-free survival following platinum-based chemotherapy (hazard ratio: 0.46, p = 0.002), independent of known prognostic factors including sex, stage, and age at diagnosis. Finally, they tested the therapeutic relevance of these observations in a SCLC patient with pathogenic BRIP1 mutation, who achieved a tumor response (-64% decrease in tumor size) with a combination treatment of a topoisomerase 1 inhibitor and a poly (ADP-ribose) polymerase inhibitor.

“The study opens new avenues for directed cancer screening for patients and their families, as well as subtyping and targeted therapies of SCLC, currently treated as a single entity,” Dr. Takahashi reported.

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Genetic analysis of symptoms yields new insights into PTSD

Attempts to identify the genetic causes of neuropsychiatric diseases such as post-traumatic stress disorder (PTSD) through large-scale genome-wide analyses have yielded thousands of potential links. The challenge is further complicated by the wide range of symptoms exhibited by those who have PTSD. For instance, does extreme arousal, anger, or irritation experienced by some have the same genetic basis as the tendency to re-experience traumatic events, another symptom of the disorder?

A new study led by researchers at Yale and the University of California-San Diego (UCSD) provides answers to some of these questions and uncovers intriguing genetic similarities between PTSD and other mental health disorders such as anxiety, bipolar disorder, and schizophrenia.

The findings also suggest that existing drugs commonly used for other disorders might be modified to help treat individual symptoms of multiple disorders.

“The complexity is still there, but this study helped us chip away at it,” said co-senior author Joel Gelernter, the Foundations Fund Professor of Psychiatry and professor of genetics and neurobiology at Yale.

For the study, the researchers analyzed the complete genomes of more than 250,000 participants in the Million Veteran Program, a national research program of the U.S. Veterans Administration that studies how genes, lifestyle, and military experiences affect the health and illness of military veterans. Among those participants were approximately 36,000 diagnosed with PTSD.

But instead of looking just for gene variants shared by PTSD patients, they also searched for variants that have been linked to three kinds of clinical symptoms that are experienced, to varying degrees, by those diagnosed with the disorder. These symptom groups, or “subdomains,” include the re-experience of a traumatic event, hyperarousal or acute anger and irritability, and the avoidance of people or subjects that might be related to past trauma.

While the researchers found underlying genetic commonalities among all three symptom groups, they also discovered specific variants linked to only one or two of the symptoms.

“We found a remarkably high degree of genetic relatedness between these three symptom subdomains. But we also wouldn’t expect them to be genetically identical, and they are not,” Gelernter said. “We found biological support for different clinical presentations of PTSD.”

The research also showed that some of these variants found in subgroups of patient symptoms are also linked to other disorders such as major depression. The results suggest drugs used to treat other disorders might also help treat PTSD.

“Our research pointed to some medications that are currently marketed for other disease states and could be repurposed for PTSD,” said co-senior author Murray Stein, Distinguished Professor of Psychiatry and Public Health at UC-San Diego.

Intriguingly, some of the variants linked to all PTSD symptoms have been associated with other neuropsychiatric disorders. For instance, PTSD-associated variants of the gene MAD1L1, which helps regulate cell cycling, have also been linked to schizophrenia and bipolar disorder.

“These observations and the recent finding of GWS [genomewide-significant] association with anxiety suggest that MAD1L1 may be a general risk factor for psychopathology,” the authors write.

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A potentially safer, more effective gene therapy vector for blood disorders

Researchers at Children’s Hospital of Philadelphia (CHOP) have developed a gene therapy vector for blood disorders like sickle cell disease and beta-thalassemia that is potentially safer and more effective than those currently used in gene therapy trials for those conditions. The vector, an engineered vehicle for delivering functional copies of the hemoglobin gene to correct a genetic abnormality, leads to the production of more hemoglobin with a lower dose, minimizing the risk of toxic side effects.

“These results have many potential benefits for the successful treatment of patients affected by beta-globinopathies like sickle cell disease and beta-thalassemia, including a better dose-response, a minimized chance of clonal expansion and tumorigenesis, a reduced cost of therapy, and a potentially reduced need for chemotherapy or radiation before beginning gene therapy,” said Laura Breda, Ph.D., research assistant professor at CHOP and first author of the paper. “All of us in the CuRED Frontier Program at CHOP is dedicated to finding new and improved curative therapies for blood disorders, and we look forward to taking steps to move this vector into clinical trials.”

Sickle cell disease and beta-thalassemia are genetic blood disorders caused by errors in the genes for hemoglobin, a protein consisting of globin and iron-containing subunits that are found in red blood cells and carry oxygen from the lungs to tissues throughout the body. The disorders, sometimes referred to as beta-globinopathies due to mutations in the beta-globin gene, lead to serious health complications, ranging from delayed growth and jaundice to pain crises, pulmonary hypertension, and stroke.

Because children with beta-globinopathies have two abnormal copies of the hemoglobin gene—one from each parent—researchers have explored gene therapy as a potential breakthrough treatment. Using an engineered carrier called a vector to introduce a functional copy of the beta-globin gene, this therapy has the potential to restore normal hemoglobin production in patients with beta-globinopathies. However, there are challenges to this approach, including limited dose-response, dose-related toxicities, and the need in many cases for myeloablation, a procedure in which the bone marrow is suppressed via chemotherapy or radiation before gene therapy can begin.

In order to reduce unwanted side effects and increase the effectiveness of gene therapy for these conditions, the CHOP researchers developed a new vector using an engineered lentivirus, the same retrovirus used to create gene therapy vectors in ongoing gene therapy trials for beta-globinopathies. The lentiviral vectors currently in use all contain the human beta-globin gene along with its promoter; three so-called hypersensitive sites that are important for gene transcription; and a truncated version of intron 2, which does not code for proteins.

The CHOP researchers hypothesized that including the full intron, rather than a truncated one, in addition to other genomic elements that promote uniform expression of the beta-globin gene would enhance beta-globin—and thus functional hemoglobin—expression. Based on this hypothesis, the research team generated five novel lentiviral vectors by combining different additional genomic elements. As a benchmark, they also generated three vectors similar to those that have already been used in clinical trials, which they used to compare to their novel vectors.

Using a variety of in vitro and in vivo screening approaches, the researchers found that one of their vectors, ALS20, expressed significantly higher transgenic hemoglobin levels than other vectors currently used to treat beta-globinopathies. Compared with the three benchmark vectors, ALS20 produced 157%, 84%, and 40% more adult hemoglobin, which would have a greater clinical impact on patients, especially those who require higher hemoglobin production to become transfusion independent. ALS20 was also more powerful, with a lower dose providing higher hemoglobin production, which could reduce the need for myeloablation and possibly allow for in vivo delivery methods.

From a safety standpoint, ALS20 viral particles did not contain unwanted genomic RNA byproducts, and mice treated with ALS20 exhibited normal physiology without any proliferative disorders or cancerous formations compared with controls.

“Considering the body of evidence presented in this work, we believe that ALS20 is an outstanding candidate for the successful treatment of beta-globinopathies,” said senior author Stefano Rivella, Ph.D., Kwame Ohene-Frempong Chair on Sickle Cell Anemia and Professor of Pediatrics at CHOP. “Our vector may not only provide safer therapy with a reduced probability of genome toxicity and milder conditioning requirements, but it may also improve the efficacy and offer a competitive product for the gene therapy market.”

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What To Know About the Drug That Grows Thick Eyelashes

It’s rare for the same medication to be used for both medicinal and cosmetic purposes. But bimatoprost (also sold under the name brand Latisse®) pulls double duty. In addition to treating glaucoma, it can be used to grow and thicken eyelashes.

It’s effective for both purposes, but is it safe? Can it cause lasting changes to your eyes? The answer to both questions, according to ophthalmologist Julian Perry, MD, is yes.

“You must remember to follow the administration instructions as specified if you want to lower the risk of any side effects,” he says. “If you use it properly, you’re exposing the eye to only 5% of the drug as compared to the eye drop method used to treat glaucoma.”

Hormone-like effects

On its own, bimatoprost is a prostaglandin – a fatty acid that has hormone-like effects on the body. As an eye drop medication, it’s used to treat glaucoma by relieving the pressure inside the eye.

It should be noted however that this fatty acid can cause light irises to become darker over the years. For example, it can cause permanent brown discoloration of the iris over months or years of use. Another side effect is known as periorbital fat atrophy – a hollowing-out appearance of the eyelids. This fat atrophy is permanent and can be severe, so you should stop using it immediately if you notice symptoms.

In an eyelash grower, however, bimatoprost’s function and effects are slightly different.

How an eyelash grower works

Before application, wash your hands and face, removing any makeup. The solution is used once nightly and is placed at the roots of the upper eyelashes with a single-use applicator. It works by creating more hair follicles during the hair-growing cycle.

Latisse is approved by the U.S. Food and Drug Administration (FDA) for use on the upper eyelashes only. It may spread to the lower lashes as you blink, but the primary effect will be on the upper eyelashes only. Don’t worry if any medication gets into your eye, Dr. Perry says, as it’s used to treat glaucoma and is unlikely to cause damage.

Results usually appear within two months. If you stop using eyelash grower, your eyelashes will gradually return to their original state.

Safe for most users

The FDA approved Latisse for eyelash growth in 2008, and it’s deemed safe for adults. Because bimatoprost is the main ingredient, if you have glaucoma and are already treating it with medication, consult your ophthalmologist before using Latisse, Dr. Perry says.

In particular, mention if you’re already using latanoprost or travoprost. Using these drugs in combination with Latisse can increase treatment side effects.

Side effects can fade with this use

While bimatoprost’s side effects are permanent used alone, when used in eyelash grower they can fade when you stop using the product, Dr. Perry says. Patients can experience eyelid itching, dry eye, eyelid darkening and bloodshot eyes. Eye and eyelid swelling, as well as some allergic reactions, are possible, according to the FDA.

More significant reactions include increased eyelash growth in the corners of the eyes and excessive eyebrow growth if the medication touches them.

Report any eye pain, infection or vision changes to your ophthalmologist immediately, Dr. Perry says.

Eyelash grower and contacts

If you wear contacts and want to use Latisse, you should know that the FDA warns that your contacts can absorb the product, which can discolor your contacts. Remove your contacts before you apply the solution, and wait 15 minutes before putting them back in.

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How to Talk and Listen to Someone With Cancer

It can be hard to know what to say or how to act when someone you know and love has cancer. Maybe it’s your spouse, a coworker or a neighbor. But no matter what, it’s important to say and do the right things in order to offer support to the person.

Cancer care nurse Josette Snyder, RN, MSN, AOCN, says there is such a thing as “cancer etiquette.”

Cancer etiquette is interacting with someone with cancer in friendly, empathetic and appropriate ways. It’s showing that you acknowledge what he or she is going through — both physically and emotionally. It’s the awareness that cancer can affect everything in that person’s life.

You should respect, too, that everyone responds differently to events and experiences. People may not respond the way you would — and that’s OK. Accepting this can go a long way in talking with and helping someone you care about who has cancer.

Here’s what to keep in mind.

Cancer Etiquette: Do’s

  • Do be connected. Simply be there for the person. You don’t have to fill spaces with talk. Your physical presence lets them know you’re there. Silence is OK too if you don’t know what to say.
  • Do listen actively. Give them your full attention and make full eye contact. Never judge what they say, just listen. It often helps to summarize back what they say to be clear and show you’re on the same page.
  • Do help them restore a sense of control in their lives. Encourage them to return to doing the things they enjoy, which can help them get back some of the things they feel they lost. Their world has changed. If it’s possible, it can make all the difference to return to familiar routines — driving, exercising, doing chores or shopping.
  • Do apologize if you say something wrong. At one point you’ll likely put your foot in your mouth, which you may sense right away. Or the person may tell you. If so, simply apologize, humbly and without defensiveness.
  • Do imagine trading places. How would you like to be treated if you had cancer? You’d likely want to be treated as you always have been — you’re the same person, after all. You’d like people to not patronize you, but you need them to acknowledge the reality and sometimes the pain and stress of your situation and treat you with empathy and compassion. You’d want them to listen.

Cancer etiquette: Don’ts

  • Don’t say “I know exactly how you feel” or compare them to other people you know who’ve had cancer. Every situation is different, so you can’t know what they’re dealing with. Their reactions to chemotherapy and other treatment are their own. Saying this negates what they’re feeling and puts the focus on you.
  • Don’t just tell them “you look great!” as this well-intentioned remark may only negate their feelings. They may be struggling inside and not feel great at all. And don’t say, “You’ve really lost weight” in an effort to make them feel good. People going through cancer treatment want to maintain their weight.
  • Don’t say “God never gives you more than you can handle.” You don’t always know where other people are spiritual. You’re imposing your belief system and values on them. That makes it about you, not them.
  • Don’t tell — ask. Ask them what they need and how you can help. Don’t tell them what you’re going to do to help. Empower them to make the decision, another way to help them restore some control into their lives.

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Sleeping With Obstructive Sleep Apnea and Narcolepsy

Although sleep is as important to health as nutrition and exercise, many of us shortchange this critical physiological need. Most adults tend to get 30-60 minutes less of the sleep needed to be well-rested. This deficit is further complicated by circadian rhythm disruption due to shift work, pandemic-related life changes, and even the semiannual clock shift required by daylight savings. Even more concerning is the inability to get adequate rest due to chronic sleep disorders.

 

Dozens of sleep disorders have been identified, almost all of which can be improved with treatment. Many sleep issues, such as short-term insomnia, can be resolved on their own or with a bit of attention to sleep hygiene. Severe or persistent symptoms, including daytime sleepiness, snoring, and movements during sleep should be discussed with a primary care provider. Certain sleep disorders are best evaluated and treated by a sleep medicine specialist who often requires a sleep study for diagnosis. Although many people are reluctant to seek medical attention in fear of being exposed to COVID-19 in offices, inconvenient sleep laboratory tests, or uncomfortable treatments, testing and treatment alternatives are available. It should be noted that the risk of seeking care is minimal compared to the health risks of untreated sleep disorders.

What is a Sleep Disorder?

Sleep disorders are conditions that involve changes in sleep patterns, such as sleep quality, duration of sleep, and timing. These changes affect the overall quality of life. Examples of sleep disorders include obstructive sleep apnea (OSA) and narcolepsy.

What is Obstructive Sleep Apnea (OSA)?

The most common sleep disorder that requires medical attention is obstructive sleep apnea (OSA). The most common symptoms of OSA include snoring, gasping or choking while asleep, and excessive daytime sleepiness. In other cases, the first signs of OSA may include insomnia, restless sleep, sexual problems, sleep-related headaches, or clenching/grinding of the teeth. OSA can develop at any time, but often frequents those who are older. It currently affects more than 20% of adults. The main risk factor in adults is obesity while the most common cause in children is large tonsils. Genetics also play a large role. Diagnosis typically requires a sleep study where the breathing is monitored. However, home sleep apnea tests are often performed instead. This test is more convenient and less expensive than an overnight test in the sleep laboratory. Untreated OSA increases the risk of drowsy driving accidents, hypertension, diabetes, heart problems, such as atrial fibrillation, stroke, and dementia.

What is Narcolepsy?

Narcolepsy is a sleep disorder that causes excessive sleepiness and fragmented nighttime sleep. Excessive dreaming that may spill over before/after a sleep period with dream-like hallucinations, sleep paralysis, or cataplexy (transient loss of muscle tone triggered by laughter or other strong emotion) are also signs of narcolepsy. This disorder can be severe. It usually begins during the teenage years and can be lifelong. Although much less common than OSA, proper diagnosis in the sleep laboratory is vital as there are effective and rapidly evolving treatments available.

How are Obstructive Sleep Apnea (OSA) and Narcolepsy Treated?

Treatment with the nightly use of a continuous positive airway pressure (CPAP) machine and a mask has proven to be highly effective. Alternatives may include an oral appliance fitted by a dentist, upper airway surgery, or Inspire, a device that implants a nerve stimulator under the tongue to keep the airway open. When obesity is the cause, long-term weight management should always be emphasized and may be curative.

Getting Back to Normal

If you’re living with a sleep disorder, keep calm. Sleep disorders are common and can be treated with a specialist’s care and a few lifestyle changes. For those who are struggling with weight management, consider starting a well-balanced, nutritious diet accompanied by daily physical exercises. Remember to take note of any abnormal sleep patterns. Contact your primary care physician or a sleep specialist who can assess you and help optimize your sleep health.

Electrical stimulation can help people who are too weak to exercise

Exercise can benefit people who have, or are recovering from, a serious illness, including cancer. The problem is, people who are very ill often have muscle weakness and other side effects that prevent them from being physically active. It’s a catch-22 situation.

Fortunately, there may be a technological solution, and it goes by the rather unattractive name of neuromuscular electrical stimulation – or NMES, for short. You may have seen this type of gadget advertised on TV, promising you a six-pack without having to do a single sit-up. All you have to do is strap a belt, studded with electrodes, around your middle and let the electrical impulses do the work. Each time a shock is delivered, the muscles contract, as they would through regular exercise.

NMES may seem newfangled, but the concept is actually very old. The ancient Greeks and Romans were the first to identify the medical potential of electrical stimulation, using electrical fishes to generate shocks to help with pain relief. Pain treatment moved from natural electricity to man-made electricity in the 18th and 19th centuries with the development of the first NMES devices.

Nowadays, we don’t just use these devices for pain relief, but for rehabilitation too. Research shows that it may help minimize the loss of muscle mass and increase strength in the leg muscles when exercise isn’t possible.

A major benefit of these devices is that they can be used at home, without the supervision of an exercise specialist.

How it works

The handheld devices make muscles contract by delivering electrical impulses to the muscle. The “shocks” are usually delivered via pads studded with electrodes. These pads adhere to the skin and are controlled by the portable unit. Electrodes are usually placed on large muscles, such as the quadriceps in the legs.

The intensity of the stimulation can be increased and decreased by the patient. As the person gradually increases the intensity of the stimulation, they will feel and see their muscles contract.

To help with muscle strengthening, impulses are delivered in cycles so that muscles are contracted for a short time before relaxing. Common strategies use a five-second contraction followed by a ten-second relaxation period before repeating. Sessions last anywhere from 15 minutes to an hour.

Who benefits?

NMES has been shown to benefit people with spinal cord injury, chronic obstructive pulmonary disease (COPD) and those who have undergone orthopedic surgery. It has also been shown to help with muscle strengthening in healthy people and high-level athletes.

However, data from cancer studies has been less convincing. Patients are willing to use these devices, so adherence isn’t an issue, but few studies have convincingly demonstrated that NMES can improve muscle strength in cancer patients. This might be because they aren’t able to reach a high enough training intensity.
 However, research has shown that through continued use and progressive increases in intensity, people can become accustomed to the sensation, helping reach intensities that may be of benefit. This suggests that longer periods of use may improve its efficacy in this group of patients.

It’s not just about strength

Muscle strengthening is just one way that NMES may benefit those unable to exercise voluntarily. Exercise guidelines typically recommend that people complete not just muscle strengthening exercises but also aerobic exercise.

Unfortunately, common NMES use for muscle strengthening does not allow for the training of the aerobic system. However, advances in technology have allowed for new ways of delivering the impulses, mimicking exercises such as brisk walking or cycling.

Researchers have shown that this technology can improve aerobic fitness in healthy people, as well as in people with COPD and chronic heart failure. The contractions produced are more rhythmical and continuous than traditional methods and mimics shivering. Sessions last around 45 minutes and can be done at home and unsupervised by an exercise professional, which makes it an attractive tool for those patients who aren’t meeting health guideline recommendations.

Being capable of possibly meeting the current exercise guidelines puts NMES in a position to provide support to patients who may benefit from exercise but due to their illness are not able to.

NMES should not be promoted as a long-term alternative to normal exercises, such as walking or resistance training, however, but it could provide support to large numbers of people and help alleviate some of their symptoms, such as fatigue and muscle weakness. These devices are uniquely placed to bridge the gap between immobility and voluntary exercise participation.

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Cancer survivors urgently need funded rehabilitation care

There are now more than 17 million cancer survivors in North America and this number is expected to increase to close to 30 million by 2040.

This is without a doubt a good news story, reflecting an impressive 27 percent drop in the number of people dying from cancer over the past 25 years. However, it is important to recognize that cancer care does not stop after treatment ends.

Although many cancer survivors are able to recover and get back to normal functioning, many others suffer toxic side-effects of treatment. These include fatigue, neurocognitive impairments, and psycho-social challenges such as anxiety, depression, and changes in relationships.

These side-effects can leave survivors disabled. They can interfere with their ability to work, engage socially and carry out simple daily tasks such as preparing meals, shopping, bathing, and dressing. Indeed, research has shown that having a medical history of cancer at least doubles an individual’s likelihood of poor health and disability.

This poses significant and pressing challenges to our health systems. The limited resources for cancer care have traditionally been directed to the treatment of new cancers and reducing mortality.

It is time for cancer care to expand the focus and include improving functioning, well-being and recovery.

Swelling, fatigue, social isolation

A recent national study conducted by the Canadian Partnership Against Cancer polled more than 13,000 people who had completed cancer treatment. It found 80 percent of patients reported physical challenges, 70 percent reported psychosocial challenges and 40 percent reported practical challenges such as returning to work after treatment ended.

Lisa, a busy 56-year-old mother of two college-aged children who worked full-time as an administrator in an office, is one example of someone who has experienced these challenges. Lisa was diagnosed with stage II breast cancer after it was detected on a mammogram and confirmed by a biopsy. She had a mastectomy, followed by chemotherapy and radiation therapy. When Lisa finished treatment she was told to come back for a follow-up appointment in three months.

Lisa developed fatigue during her treatment and started to have a heavy feeling and some swelling in her arm. She hoped that this would go away once her treatment ended, but two months later she still felt tired and had no energy and the swelling in her arm had increased. She felt pressure to get back to work and she was increasingly feeling socially isolated because she had no energy to get out and see her friends.

She started feeling anxious and not sleeping well. But Lisa didn’t tell anyone she was suffering. She felt she should be happy she survived. She wondered if this was just normal and to be expected.

Survivors left on their own

For people like Lisa who are affected by persistent side-effects of cancer and treatments, rehabilitation can play an important role. Rehabilitation for cancer survivors is similar to rehabilitation from other conditions (for example after a heart attack or stroke) and there is good evidence demonstrating the benefits of cancer-specific rehabilitation interventions for quality of life and physical functioning.

Based on this growing evidence base, there are now consensus‐based guidance statements on rehabilitation. Despite this, there is little to no funding for outpatient rehabilitation for patients after cancer treatment. Integrated comprehensive cancer rehabilitation programs are still the exception rather than the rule across North America.

As a result, cancer survivors often feel left on their own to manage the long-term consequences of cancer. As cancer rehabilitation researchers Julie Silver and Laura Gilchrist describe it: “The medical system creates a situation where high-functioning individuals are given life-prolonging treatments and then left to struggle with how to recover from the toxic adverse effects of these therapies.”

In Lisa’s case, at her three-month follow-up appointment, her oncologist referred her to a lymphedema specialist to help manage the swelling in her arm (on a fee-for-service basis) and recommended that she start exercising to help with the fatigue.

This was good advice given the current evidence, but Lisa had no idea how to start and was so tired and distressed that she felt overwhelmed. She also didn’t know what exercise to do and if it was safe given her lymphedema.

Multidisciplinary teams leading the way

Lisa is not an isolated case. She would have greatly benefited from a multidisciplinary rehabilitation team that could have helped her begin a safe and progressive exercise program, address her mood and sleep issues and make a successful return to work plan.

Some emerging rehabilitation programs are leading the way and offering examples of what could be the standard of care for cancer survivors. At the Princess Margaret Cancer Centre in Toronto, patients who have identified impairments are referred to the Cancer Rehabilitation and Survivorship Program which offers a lymphedema service along with one-on-one consults with the rehab team to address issues such as return to work, physical function, and neurocognitive changes.

The program also offers an eight-week group rehabilitation program that combines exercise and education and is soon to launch an online program for patients to access from home. The demand for this program has grown by close to 30 percent each year, yet the funding for this program comes from the Princess Margaret Cancer Foundation rather than health-care funding. Patients from outside of Princess Margaret do not have access to these services and often pay out of pocket for access to rehabilitation specialists who may not have specific cancer training.

Cancer rehabilitation should not be viewed as a frill add-on but rather an essential part of cancer care. The increasing number of cancer survivors, along with the growing evidence documenting the lasting effects of treatments, serves as an urgent call to action — to invest in the recovery and well-being of cancer survivors and help them get back to life after cancer.

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How rehab helps heavy drug and alcohol users think differently

Around 16,700 Australians stay in residential rehabilitation centers each year, most commonly for problems with alcohol, amphetamines and opiates.

Rehab is a structured, drug- and alcohol-free environment. Residents participate in the same daily and weekly routines and activities, including educational and therapeutic groups and individual counseling sessions. Household chores, cooking, exercise, education and recreational activities fill the time.

Some rehabs have as few as 12 residents at one time, others have as many as 60. Programs last from six weeks to 18 months, with eight weeks the average in Australia.

Our recent study of 12 rehab residents in Australia found the safe, structured environment and the support of others going through the same experience was key to helping residents change their thinking about drug and alcohol use.

Safety and routine

We asked people what program elements they thought were important. They most often talked about the safe environment, structured routines and staff support. As one woman explained, “I love my room, it’s my space. I am safe there.”

Living in a group environment with strangers while fighting mood swings and cravings is tough. The staff maintained the routines and monitored the group dynamics but they also responded to individual needs for support: I’ve had down days and they’re (staff) pretty quick to pick it up. I’m not the sort of person that likes to talk about emotions and let it out, but they’re pretty quick. The times I’ve been down, they pick it up pretty quick.

Living in a group environment is part of learning how to manage without using drugs. Critical changes that study participants attributed to the program were about dealing with their own and others’ emotions: I think, what I’ll take away is to understand that that’s the person I am and I’ll manage it. To understand my feelings, like when I am angry, to get away from the situation and take a breath and understand my feelings, I guess. Just understand what I’m feeling. If I’m angry, I know there are other options than to go use or drink.

A new way of living

Most participants described the shared experience of everyday life without drugs or alcohol for an extended period as particularly important. One woman said: we’d sit around laughing our heads off and actually we’d say we’ve probably never laughed so much in our lives. We were just sitting around with no alcohol, no drugs and just making do with what we’ve got.

For many, that change was unexpected: There was no drugs or alcohol involved and pretty much the first time since I was a young teenager, I realized you can be happy. I don’t know. It was just a bit of a change in life.

Rehab programs are not usually designed around a specific type of drug or individual. The same therapies are applied to everyone.

The group content used in the rehab we studied included health and well-being education and psychological therapies intended to help people deal with triggers and make decisions around drug use.

 

However, the most important thing for most people was a daily, group-based reflection on personal values which helped create a different view of themselves as, say, a mother or friend. As one man said: so it makes me look at myself like I’m forgiving and humility, and really looking at me and going, okay, well, I’m not such a crap person, because I’m an addict. I’ve got some good values there.

Possibility of relapse

Fear and anxiety about relapse after leaving rehab were common. People felt vulnerable to resuming drug use despite gains made during the program and their desires to remain substance-free: I’m getting a bit anxious, knowing that I’m going. I’ve been here, wrapped in cotton wool for two months, and being released back into the big, wide world, I’m scared that I’m going to relapse.

Few study participants had the support to cope in the future. Friends and social groups were limited because past connections usually involved drug use: That’s going to be the hardest thing for me, seeing old mates and them asking if I want some. That’s the hardest part. You are who you hang around. It’s sad to say, but I’ve started hanging around some pretty ordinary people. You think they’re your friends but they’re not.

Maintaining change after rehab is a challenge and few supports are available.

Relapse rates are high. Most people use drugs in the year after treatment. Between 40% and 60% return to substance dependence.

The downsides

Several people described being fearful of what would happen when they got there. Others described conflicts between residents and lack of contact with children as challenges they faced.

The cost can also be an issue. The center we studied charged A$240 a week for all facilities including therapeutic programs. But private rehabs are also available and can cost as much as A$30,000 a month.

Rehab fills the day and provides intensive support for people but that doesn’t exist when they go home.

Community support programs like counseling, employment and drug-free social and recreational programs, which bring safe family members and friends back into the picture, could reduce relapse.

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