Last week, we hosted an #patientchat on “Best Practices for Participating in a Patient Community” with Carly Flumer (@carlyflumer). The #patientchat community came together for an engaging discussion and shared what was their mind.
Patients and caregivers are often consumed in the weeks after diagnosis with learning medical jargon, interpreting data, and understanding their options. Lymphedema is one of many new terms they may hear, and their medical provider may not spend much time discussing this potential post-treatment affliction. Understandably, treating cancer is the priority.
However, lymphedema is a chronic, progressive, and incurable condition and the risk should not be ignored. If your cancer treatment involves removal or damage of lymph nodes, understanding lymphedema can go a long way preparing for and even mitigating the risks of developing a debilitating condition in the months and years following your cancer treatment.
Lymphedema is a lifelong disease. It cannot be cured. It most often involves swelling in arms or legs but can also affect the head, neck, trunk, and genital area. While some people are born with a genetic condition that leads to lymphedema, seven of the estimated 10 million Americans with lymphedema developed it as a result of cancer treatment.
It is caused when a person’s lymph nodes are removed or damaged. This impairs the lymphatic system causing lymphatic fluid to build up in the body. Pain and fatigue are common with lymphedema. Swelling can limit mobility and lead to structural change in the affected body part. Impairment of the lymphatic system can affect a sufferer’s immune system and cardiac or neurological health. Lymphedema sufferers are also at a higher risk for social isolation and depression.
There is a risk of lymphedema for any cancer patient who has lymph nodes removed or damaged, such as by radiation. While most patients do not develop the condition, medical experts do not yet understand why some patients develop lymphedema and others undergoing the same treatment do not.
Certain cancer patients are at a higher risk for treatments that result in lymphedema. The Lymphatic Education & Research Network offers these estimates for the percentage of patients by cancer type that develop lymphedema:
The risk of developing lymphedema never completely disappears after the loss of lymph nodes. Approximately 80-90 percent of those who develop it, do so in the first year after the loss of the lymph nodes. The remaining cases can develop even years after cancer treatment.
That’s why recognizing the signs of lymphedema is essential for a survivor who loses lymph nodes to cancer treatment.
There are several ways to monitor a patient for lymphedema including circumference measurements, bioimpedance spectroscopy (BIS), water displacement, tissue tonometry, perometer, or lymphangiography.
Circumference measurement is the most common tool because it’s inexpensive and easy to do. Patients undergoing lymph node removal should have preoperative measurements taken. Regardless of which monitoring strategy used, its important monitoring is overseen by a professional with training and experience with lymphedema.
If this monitoring is not part of your post-treatment or post-surgery plan, you can advocate for it. Monitoring is most crucial during the first year after removal or damage to the lymph nodes. Waiting for the patient to notice and report lymphedema symptoms like swelling, pain, or mobility limitations is not a good strategy. Medical monitoring can allow for earlier intervention and better outcomes.
Investigate what your insurance plan will cover for therapy, prosthetics, orthotics, and durable medical supplies. Compression garments are one of the most common treatment tools for lymphedema. Yet most insurance plans—including Medicare—do not usually cover them. Some plans limit the number of therapy visits or the types of therapy covered. Knowing what your insurance covers will prepare you should the need for treatment arise. Start by reading the Lymphatic Education & Research Network’s guide to insurance coverage for lymphedema.
While there is still much to learn about lymphedema, one thing is certain: the earlier after developing lymphedema you begin treatment, the better the results. While it is incurable, lymphedema progresses in stages. Specialized therapies can not only improve symptoms but also slow the progression of the condition, resulting in a better quality of life for the patient.
Patients who experience lymphedema induced swelling might notice that elevating the affected body part reduces swelling. A medical professional unfamiliar with lymphedema may even prescribe elevation. While this might reduce swelling temporarily, elevating an affected limb is not treatment.
Treatment can involve compression wrapping or garments, lymphatic drainage massage, and decongestive exercise. In extreme cases, surgery is sometimes an option. While there are ongoing clinical studies into lymphedema treatments, no studies have yet identified an effective medication for treatment.
Look for a therapist or other medical provider with training specific to lymphedema when creating a treatment plan. You may be able to find a Certified Lymphedema Therapist in your area from the Lymphatic Education & Resources Network. Or ask your oncologist for a referral.
Look for a licensed massage therapist with specialized training in manual lymph drainage. Sometimes referred to as lymphatic massage, this treatment differs from a traditional massage. Instead of manipulating soft tissue like muscles, fascia, and ligaments, the therapist works body areas where lymph nodes are located. They stimulate the flow of lymph with light, gentle pressure. Be aware, not all massage therapists are qualified to perform manual lymph drainage massage.
“While it is legal for a licensed massage therapist to perform lymph drainage, a practitioner who has gone through a certification program will have a greater knowledge of the scientific basis of lymphology, along with the physical handwork skills that are necessary to excel in this therapy,” explained LMT Nicole Anderson. “Most programs are around 135 hours for certification.”
Lymphedema can predispose a patient to skin breakdown, infection, and delayed wound healing. Meticulous attention to skincare and protection are essential to self-management of lymphedema. A small cut or even a sunburn can have significant consequences for someone with lymphedema. The body produces extra fluid to deliver infection-fighting white blood cells to an injury, but in a person with lymphedema, the lymphatic system will struggle to remove the extra fluid. The National Cancer Institute offers helpful guidelines for basic preventative self-care for people with lymphedema.
Other things that can exacerbate lymphedema include wearing restrictive jewelry or clothing. Excessive heat can be a problem and people with lymphedema are often told to avoid hot tubs and saunas. Alcohol can worsen symptoms. Air travel can also be a triggering event and people with lymphedema should consult with their medical provider before traveling. Sometimes special compression garments can be worn during travel to lower the risk of an adverse reaction.
Good nutrition and staying active are also important for mitigating the effects of lymphedema. Regular movement and maintaining muscle tone help lymph fluid circulate and drain. Weight gain makes monitoring and treating lymphedema more difficult.
The Lymphatic Education & Research Network and the National Lymphedema Network are both great resources for people with lymphedema or anyone who wants to learn more. They provide educational resources, information about clinical trials, access to local support groups, and the latest research into lymphedema.
Don’t let lymphedema catch you or a loved one by surprise. There is much a proactive patient can do to prepare for and respond to lymphedema. Odds are in your favor you won’t have to confront this condition, but if you do, a little preparation will have a positive impact on your quality of life.
Marcia Evans is a writer and communication manager with 20 years of experience in public affairs and advocacy. Her focus is on helping organizations create communication strategies that make meaningful connections with their followers. She writes in honor of her uncle, who lost his battle with small cell carcinoma in 2018.
Curing cancer is undoubtedly one of the biggest challenges of the 21st century. One can still not say for sure if the scientists would be able to find the cure for cancer by the year 2020 ends. Nonetheless, there is no denying the fact that the last two decades have seen significant advancements being made to cure cancer if not from the root, but at least after it has been diagnosed. Many technological advances have been made with more investments being made for the research and development of highly advanced equipment that can help from conducting tests, diagnoses, confirmation to providing a relatively easier solution to making it better.
According to the latest statistics published in the ACS Journal for cancer research and diagnostics, in 2020, there are an estimated 1.8 million cancer cases in the US alone. However, the cancer rate has increased since 1991 consistently declined throughout till 2017, bringing about a total of 29% decline. These figures estimate that if approximately 606,520 cancer deaths are going to occur in the US, it is 2.9 million fewer than what it had been like if no new advances would have been made.
Over the years, technology has played its part in greatly reducing these numbers. Let’s see what the new decade has in store to help tackle this disease.
Thus, here are the top twelve newest technological advancements being made in the name of curing cancer, diagnosing it accurately early on, and aiding in making it easier for the patients who are already suffering.
Believe it or not, but a genetic mutation of cells causes cancer. The healthy cells transform into tumor cells in different parts of the body to cause cancer. As simple as it may sound, cancer is much more complex. As each cell growth can be very different from any other, this disease has severity levels of many different types that each of which may require individual attention, care, and medication.
According to Sean Marett, who is the CBO of the German immune-oncology company BioNTech,
“Mutations are random. If you look at one patient’s tumor and compare it to another patient’s, it would be highly unlikely that there will be a match.”
This is the main reason why BioNTech is proceeding with the development of personalized vaccines that will cater to every different type of cell growth.
Cancer itself is gradually spreading, but the treatments of this disease put the person in a way more vulnerable position to adhere to pain. For instance, as a part of cancer treatment, there may come a situation where a single biopsy is not enough. There are many biopsies and re-biopsies required that put the patient in an uncomfortable position as it is a painful test performed through your back using your spinal cord. In such circumstances, a fluid biopsy would reduce the chances of going through the biopsy pain more than once by allowing to test the cancer cells through a single blood sample.
The first approval of this cell therapy for cancer was seen in 2018. The technology behind this therapy is known as CAR-T cell therapy, is responsible for taking the patient’s immune T-cells, and by using genetic engineering, the cells would target the specific cancer antigen. There is no denying the huge success and immense progress that the clinical trials of the CAR-T cells have shown. Especially for patients that have already gotten rid of cancer but relapsed after some time and have already consumed all other options of medication to no avail, this technology guiding the immune cells to do the job would work progressively.
Developed by Zoltan Takats of Imperial College London, this intelligent surgical knife is known as the iKnife, is a great tool to be soon incorporated in the surgical kit for oncologists. It works by integrating a rather traditional technology of electrical currents heating the tissue to make incisions. This allows precision, as well as minimal blood loss. And as the iKnife vaporizes smoke and analyzes it by a mass spectrometer, it detects chemicals in the biological sample for an accurate result and a successful surgery. Not only does this save time for the real-time identification of malignant tissue, but surgeons love the tool for saving their time as well by cutting the surgery time almost in half.
In the last ten years, where the technological advancements were paving the way, the associated research allowed the scientists to uncover that many of the answers that we are looking for may reside right within our body. One of those discoveries was learning that our own microbiome that is the collection of the microorganisms that live inside our body, plays a huge role not only for cancer but for overall many other health aspects.
According to Christophe Bonny, CSO of a French company responsible for developing microbiome medicines,
“Elements of the microbiome play a role in suppressing an overactive immune system in inflammatory diseases, and in boosting a suppressed immune system in cancers.”
Auto-Immune Deficiency Syndrome or AIDS became one of the more dangerous diseases sometime back in the last decade. However, by combining drugs that were developed to cater to different targeted diseases, it resulted in an overall major treatment success that was finally able to put a gap between the disease carriers. Now, applying the same trial and error logic to cancer, research was able to pick up that the same can be proven beneficial. New advancements made in the field of biology that utilizes computer models to predict which targeted medicines may work in the perfect combination to provide reduction for the cancer ailments.
Many major research companies like Foundation Medicine are focusing on the early diagnosis of the disease than the actual cure. They believe the cure resides with the chemotherapy only if we turn down the severity of the disease and diagnose it as early as possible. They are adamant about working through molecular cancer diagnostics to develop test batches and clinical trial drugs that work just to recognize a stage one cancer right as soon as it develops in the cell. They hope that over time this will become the standard testing procedure followed by the tried and tested chemotherapy sessions that may even reduce in the number given how early the disease is caught.
Radiology is already a successful domain in a lot of medical fields. However, without a doubt, future innovations are based on doing one successful technology work for interdisciplinary aspects. For instance, Magnetic Resonance Imaging or MRI machines is currently used for delivering gene therapy, but for the future, it can be a potential treatment for brain tumors. You can find related articles on the essay writers service that further elaborate on how multifunctional innovations would be the go-to technological aspect application for the future.
The initial steps that we take like extracting the tumor cells from blood and sequencing the DNA as fast as possible; the decision making part of choosing with which treatment to follow up is still complicated. Even the most expert oncologist is not on the level to make a blind call based off of millions of studies and clinical trials for keeping the billion genetic mutations that could happen in a human body. It is why artificial intelligence or AI is the next big thing even in a cure for cancer research and development. The algorithms can not only remember the mutations but program them through to come up with a treatment in minutes.
Now coming to how can you can ease the process of measuring your health and updates about your internal body organs. So in many cases, the parameters taken for that can already be a huge aid for cancer reduction for pain. The advanced sensor technology is developed across all boards. You can work by having it embedded, implanted, or even continue by digestible sensors. These sensors can be swallowed to go through your digestive tract and come around the other way by sensing and recording whatever temperature changes it felt.
Wearable technology is already a huge market domain for fitness and tech enthusiasts alike. It can become a great tool for measure pain, heartbeat, blood, sugar, and chemo levels for patients by just a band around their wrist. Not only will it ease the pain of multiple tests, disruptions, and medicines, but wearable technology will automatically record data and keep it safe for further use and analysis.
Lastly, cancer has seen many developments been made to its name for numerous to cure it, treat it, or just to provide even a little relief in pain. So the future holds many different opportunities as the technology advances for the already successful ways to become more precise and have a hundred percent guaranteed results.
Even if scientists and researchers are unable to find the complete cure for cancer by the end of the year 2020, there is still immense hope and gratification towards newer technology paving ways for the treatment and making it all the easier day after day for the patients who go through the unfortunate disease that is cancer.
Claudia Jeffrey is currently working as a Health Enthusiast & Writer at Assignment Assistance, UK’s favorite dissertation help providers. Being a part of bigger research teams at medical facilities for cancer, she has gained significant experience over time. For further reading, you can check out her blog, where she shares her knowledge and expertise with a network of audience.
Since the 1980s, doctors have tried to describe the stages cancer survivors normally go through. Most divide them into a version of the three stages described below:
Acute Survival (Living With Cancer) – Covers cancer diagnosis and any subsequent treatment. During this time, patients will undergo treatment and may be invited to participate in a clinical trial to study new cancer treatments. Sometimes services are offered to patients and their caregivers to address emotional, psychological and financial problems.
Prolonged survival (transient cancer): Post-treatment period during which the risk of recurrence is relatively high. Many patients are relieved that treatment has ended, but are concerned that they will not visit the oncologist regularly. During this stage, patients often visit the oncologist two to four times a year, depending on their circumstances.
Permanent survival (living after cancer): survival after treatment and long-term. Although two out of three survivors declare that their lives have returned to normal, a third affirms that they continue to have physical, psychosocial or economic problems. During this stage, most survivors are cared for again by their GP. Ideally, they have developed a long-term follow-up plan with the oncologist for their regular doctor to implement.
In addition to the physical effects of cancer, survivors experience psychological, emotional, and spiritual consequences. Many of them affect quality of life and can manifest many years after treatment. Here are some of the most common problems cancer survivors face:
Many survivors live in fear that the cancer will return at some point. In some cases, a major event, such as the anniversary of the diagnosis or the end of treatment with the oncologist, can trigger these feelings. Fear can be good if it encourages you to discuss your health changes with your doctor, but it can also cause unnecessary worry. Knowing your own body will help you distinguish between normal changes and more serious symptoms.
Grief is the natural result of loss. In cancer, losses refer to health, sexual desire, fertility, and physical independence. To overcome your pain, it is important to experience all of these feelings. Support groups and psychological assistance can help you deal with these problems.
It is estimated that 70% of cancer survivors experience depression at some point. Depression can be difficult to diagnose in cancer survivors, since the symptoms are very similar to the side effects of cancer treatment, such as weight loss, tiredness, insomnia, and inability to concentrate. In a 10-year follow-up study, symptoms of depression have been found to be associated with shorter survival, so seeking treatment for depression is essential.
Cancer survivors who have suffered amputations, disfigurements, and loss of organs such as the colon or bladder often have to overcome their problems to relate to themselves and to others. A negative body image and low self-esteem can affect the survivor’s ability to maintain relationships with their partner, which will have important consequences on their quality of life. Good communication is essential to maintain or regain intimacy after cancer. Consult a doctor if problems persist.
Many survivors feel that life takes on new meaning after cancer and renew their commitment to certain spiritual practices or organized religion. Research indicates that spirituality improves quality of life through a strong social support network.
Some people feel guilty about surviving cancer when others don’t. You may be wondering “Why me?” Or reevaluate your goals and ambitions in life. If you have a prolonged feeling of guilt, a psychotherapist, a member of the clergy, or a support group can help you express your feelings.
Possibly the biggest challenge cancer survivors face is how others react to their disease. Friends, coworkers, and family members may feel uncomfortable when discussing the diagnosis of cancer. They can keep silent, avoid you, or pretend that nothing has happened. Others may use humor to try to distract you and not think about your situation, instead of offering to talk about your problems. Cancer can be a long-lasting disease, so it is essential to overcome communication barriers.
Social and professional reintegration can be accompanied by many fears: concern about being exposed to a higher risk of infection, lack of enough energy to reach the end of the workday and anxiety about not being able to think clearly due to the so-called “neurological impairment by chemotherapy “or memory loss. In overcoming a life and death situation, many cancer survivors feel alienated from people who have not had the same experience and turn to other survivors for support and friendship.
You may be reluctant to reveal to your bosses and colleagues that you are receiving cancer treatment for fear of being treated differently or even losing your job and health insurance. This creates an atmosphere of uncertainty that contributes to emotional stress. Again, honest communication with your colleagues will help you overcome these feelings.
About the author: Diane H. Wong is copywriter at write essay for me service. She is also a professional nutritionist and plans to start her own blog to share her knowledge with others.
When I was diagnosed with cancer, I thought “This is all on me. I’m going to get through this on my own.” I didn’t want to burden anyone with my new “problem.” I had my family, of course, but even then, I didn’t wear them down with upcoming medical bills. In my mind cancer equaled a solo journey.
It wasn’t until late into my journey as a cancer patient that I found that I needed others. I needed a community of people like me who were going through the same thing I was. A group of people that I could call a “second family.” Searching for “thyroid cancer groups” on Google led me to Thyca, Inc., an organization specifically for thyroid cancer patients. They offer face-to-face support groups in my area, which I still try to attend. In these groups, we’re able to freely share what we’re going through as a cancer patient and provide support to one another. Additionally, I found a group on Facebook that was specific for my type of thyroid cancer which provided even greater benefit, as we know that all cancers are different. In this group, we also share our experiences, but in a virtual format. In this way, more patients are able to come together to create a larger network of people with whom to connect and learn from.
Finding these online and in-person support groups provided me an outlet for which I could share my ups and downs and often find them reciprocated. Additionally, I learned information about what to look for in and how to communicate with an endocrinologist, a special type of physician for thyroid cancer patients. I learned about the different blood work levels to monitor in a language that made sense to me and not the scientific jargon I usually heard from my doctor. Most importantly, I found people who “get me.”
However, I was hesitant to share everything, even little bits and pieces of what I was going through and what I was feeling. Sharing data online can be scary, especially health data. That’s why it’s important to find websites and organizations that have confidentially and/or privacy policies in place and monitor people’s behavior. Look at what other patients are saying. How revealing are they being? Are they displaying appropriate behaviors (ex. helpful vs malicious)? If you feel uncomfortable, report it!
“Finding your tribe” is something I wish I had done earlier in my journey. I wish my doctors would’ve told me about support groups. As I’ve learned, a chronic illness is not something you go through alone, much less cancer. Having a group, whether it be large or small, face-to-face or virtual, can provide immense benefit for both emotional and mental health.If you’re struggling through your health journey alone and feel like you need someone to talk to or even provide a listening ear, find your community. Find “your” people. A simple Google search helped me, but there are a number of organizations to look out for. Here are some of my favorites I found as a cancer patient:
– Inspire (chronic conditions, including cancers)
– Our Odyssey (rare diseases, including cancers)
– Facebook groups (general and specific to the type of cancer)
– Twitter (find groups using hashtags)
– American Cancer Society (search for support groups)
– Stupid Cancer (virtual and in-person support groups)
– Cancer Support Community (all cancers)
– Cancerfighter.com (all cancers)
Don’t miss the Best Practices for Participating in a Patient Community Empowered #patientchat Friday 4/3 at 1pm ET | 10am PT with Carly!
Carly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University in Health Communication and received her Bachelor’s from George Mason University in Health Administration and Policy. While being diagnosed with the “C” word at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her health outcome, she looks to advocate for other cancer patients through education, research, and health literacy.
The Importance of Living in the Moment from Patient Empowerment Network on Vimeo.
Jeff Bushnell and Summer Golden, MPN Network Managers at the Patient Empowerment Network share the importance of truly living in the moment. Summer shares how Betty Boop, her pink poodle, was diagnosed with lymphoma. Fortunately, Betty was able to pull through, emerging as resilient. Both Jeff and Summer were inspired by Betty Boop, to redefine what it means to live in the moment. They both share how living in the moment has allowed them to cope with Summer’s diagnosis of Myelofibrosis.
What activities keep you living in the moment? Share it with Jeff and Summer! question@powerfulpatients.org
Technology has changed medicine as we know it. Not only have surgical and diagnostic procedures been revolutionized in incredible ways, but so has the communication process between doctor and patient. The days of having to sit in a crowded waiting room to seek advice from a doctor are long over, as remote patient monitoring software is making it easier than ever before for doctors and patients to communicate from afar. Long-distance communication is as beneficial to doctors as it is to patients, especially in times when social isolation is required because of infectious disease or in the case of natural disasters.
By communicating via a dedicated application, the risk of person-to-person contamination is reduced drastically which I of immense benefit to patients with compromised immune systems. It also allows patients and doctors to honor appointments regardless of unforeseen circumstances such as out-of-town travels and other obligations. There are a number of quality applications available that boasts superb features such as crystal clear audio and video transmission and even multiple-provider integration. Apart from enabling patients to get remote medical assistance, these applications also permit medical practitioners to attend to more patients in a day and even keep to irregular working hours with increased ease.
Medici is a popular U.S.-based, HIPPA-compliant application that connects doctors and patients through video chat and text. One of the biggest appeals of Medici is that it does not merely function as an online hospital but rather connects patients with their own doctors. Through the app a doctor is able to diagnose ePrescribe, bill, and eRefer from anywhere in the world. A patient can easily set up a useful network of doctors, therapists, dentists, and even veterinarians and get diagnoses, advice, and prescriptions issued without leaving home. The Medici platform has proven to be especially beneficial during the cold & flu season as well as during periods of extreme weather. The Medici app can be downloaded for free via the Apple App Store or Google Play Store.
The innovative MeMD application allows patients to connect with physicians, nurses, and physician assistants in order to save time when dealing with minor health concerns ranging from bronchitis and diarrhea to anxiety and eating disorders. The specialists consulting on MeMD can also write prescriptions for medications as permitted by the various state laws. These prescriptions can be collected from the patient’s nearest participating pharmacy. Apart from issuing prescriptions, MeMD also offers subscribers 24/7 service access and real-time video examinations and will readily assist in finding a participating pharmacy nearby. At present, the cost of a MeMD consultation is in the region of $60, and the app is available for download from both the App Store and Google Play Store.
Technology is making long-distance communication between doctors and patients easier than ever before. For the first time ever it is possible to be diagnosed and issued with a prescription without having to leave the house.
As the coronavirus outbreak continues its relentless spread, the impact of the pandemic is being felt across the globe. We are facing a critical time of fear and uncertainty individually and in our communities.
COVID-19 will affect us all to varying degrees – physically, emotionally, socially and psychologically.
You may notice an increase in some of the following feelings:
Both The Centers For Disease Control and Prevention (CDC)[1] and The World Health Organisation (WHO)[2] have responded to the psycho-social impact of coronavirus by releasing guidelines for those whose mental health is being negatively impacted.
In addition to these guidelines, many patient leaders are providing information and support to their communities through their social media channels. To quote board certified coach, Nancy Seibel (@NancyLSeibel) “those of us who have had cancer and other serious health challenges know something about how to self-calm and cope with uncertainty. We know a lot about life being upended; uncertainty; living with but not in fear. It’s a hard-won gift, one that we can share with others.”
While this is naturally a worrying time, there are many things we can do to mind our mental health and boost our immunity and well-being at this time. Being proactive about how you handle this crisis can help to keep both your mind and body stronger. I hope you will find the following tips helpful and reassuring as you navigate your way through this time of global crisis.
While many of the things that surround this crisis are outside of your control, you can still focus on those things that are within your control. Hand washing, staying at home, limiting unnecessary travel and contact with others are steps we can all take to decrease our personal risk and protect others. If you’re a cancer patient, currently undergoing treatment, you are in a high-risk group because cancer treatment compromises your immune system[3]. Follow the advice for High Risk Patients outlined on the Centers for Disease Control and Prevention (CDC) website.[4]
That said, the reality of life as a cancer patient has probably prepared you for this moment better than most. As breast cancer survivor, Diane Mapes, wrote in a recent Fred Hutch [5] article, “For the immunocompromised and those with disease, social distancing and uncertainty are a way of life.”
In a world of 24/7 rolling news and social media updates, it’s easy to get drawn into speculation and hype. “It’s ok to be scared,” says breast cancer survivor, Karen Murray (@MurrayKaren), “but don’t let fear take hold.” Rumors, myths and falsehoods can take on a life of their own if we let them, but as patient advocate, Nancy Stordahl[6] reminds us, “calmness is contagious too.”
Keeping a realistic perspective of the situation based on facts is important at this time. Avoid media outlets that build hype or dwell on things that can’t be controlled. Stick to respected sources of information on the coronavirus and how to handle it.
If you’re unsure about something you’ve read or heard, check it on the International Fact-Checking Network (IFCN) at the Poynter Institute[7]. If you’re concerned about whether you may have COVID-19, the Cleveland Clinic[8] has a free screening tool to find out your risk level, based on your symptoms and travel. Additionally, Intermountain’s COVID-19 Symptom Checker[9] is an easy to use, digital tool to help people get important information about COVID-19, assess their risk, and navigate to the most appropriate care setting. “These are scary times, for sure,” points out Nancy, “but knowledge is power. Learn what you need to in order to keep you and your loved ones safe.”
The constant stream of social media updates and news reports about coronavirus could cause you to feel extremely stressed. If the constant drip feed of live news and social media is making you anxious, limit your exposure to news outlets. I’m not suggesting you totally ignore important news updates – it’s essential to keep yourself informed. But you can reduce your anxiety by reducing the amount of time you expose yourself to the news. Limit your media consumption to a certain amount of time each day. According to WHO, minimizing the amount of news you watch can be beneficial in helping people keep calm and positive. The organization also suggests we “find opportunities to amplify positive and hopeful stories and positive images of local people who have experienced Covid-19.”
It’s important to pay attention to your self-care needs, especially during times of stress. Eating a healthy, balanced diet, avoiding excessive alcohol and stimulants, getting plenty of sleep, practising relaxation techniques, such as breathing exercises and meditation, and taking daily exercise are key ways to stay physically and psychologically healthy during stressful times. Oncoplastic breast cancer and reconstructive surgeon, Dr Tasha Gandamihardja (@DrTashaG) also suggests you “do little things that give you joy e.g. watch a favorite program or read a favorite book.”
Don’t put too much pressure on yourself at this time, advises metastatic breast cancer patient, Julia Barnickle (@JuliaBarnickle). “On days when I don’t have the energy to do much, I tell myself ‘just do one thing.’ If I feel like doing more, that’s great, but I never feel guilty about only being able to do one thing. So I choose the one thing that feels most important, whatever it is,” she says.
Build regular exercise into your day. There’s an abundance of scientific evidence showing how important fitness is for mental health: so during this very stressful time, it’s even more important. The closure of gyms at this time doesn’t of course mean you can’t keep fit. Going for a walk or hike (if you aren’t self-quarantined) watching a workout video online, practicing yoga or walking up and down stairs in your home are all ways to keep active and fit. Cancer researcher, Emily Drake (@EK_Drake), has seized on this time as an opportunity to learn to run. “I’ve never been a runner,” she explains, “ but with gyms and yoga studios closed – online just doesn’t work for me – I need to get out.”
Registered dietitian, Cathy Leman[10] recommends you mix and match from these 29 foods each day to boost your body’s stress busting powers.
Your daily routine may be affected by the coronavirus outbreak in different ways. But according to WHO, people should try to stick to their daily routines as much as possible. “Ensure that you create a realistic and helpful daily routine and structure to your day, and stick to it, “ recommends psychotherapist, Karin Sieger.[11] “Have regular times for getting up and going to bed as well as meal times.”
For those of us who are working from home maintaining a routine can be challenging. The temptation to sit in pajamas all day is real. Try to stick to a working routine as much as possible – this includes structuring your day with regular breaks (try working in 45-60 minute chunks of focused work followed by a short break), minimizing distractions, stopping for lunch, getting some fresh air, avoiding staying in the same position for prolonged periods of time and keeping hydrated.
While “social distancing,” is hypothesized to flatten the curve of the contagion,[12] it’s not without costs. Research shows that social support is vital for our mental and physical health. According to WHO, individuals in isolation are one group that may feel the impact on their mental health the most. To combat the loneliness of self-isolation, the organization advises people to “stay connected and maintain your social networks”.
Maintaining strong connections will help you to feel supported, but since face-to-face in-person support is limited we need to find other ways to connect and receive support. Patient advocate, Terri Coutee (@6state) recommends utilizing online platforms. “Call/text family members often and talk about fun times together,” she suggests. Social media and social messaging apps are a boon at this time. Patient advocate, Siobhan Feeney (@BreastDense) says she is “so grateful for my social media friends in many countries as we share the burden of this pandemic.” In addition, individuals who are self-isolating can also use QuarantineChat,[13] a new app that aims to connect people who are quarantined and may not have close family or friends to call. [14]
Doing something creative can help improve your mood when you feel anxious or low. Creative activities can also increase your confidence and make you feel happier. This is because creative hobbies often completely absorb your attention, helping you to temporarily forget negative thoughts. Carolyn Thomas (@heartsisters) shares this lovely idea for creating together with friends: “my paper-crafting friends and I are having our first ever virtual card-making workshop together via the miracle of video chat…. We each have a number of springtime birthdays coming up among our families and friends, so we’ll be creating springtime-theme birthday cards today.”
Looking for some more creative ideas? From baking to blogging, journaling to jigsaws, Sara Liyanage, author of Ticking Off Breast Cancer, has compiled a bumper list of distractions[15] for you to try. Also check out PEN’s own Activity Guide here. Experiment until you find something that suits you.
Nancy Seibel recommends shifting your focus to giving and receiving kindness. “You’ll be worried, anxious or fearful at times. That’s a natural response to what’s happening, “ she says. “Accept those feelings compassionately. See if there’s anything to learn from them. Then shift your attention. Focus on what you’re grateful for. Walk. Ride your bike. Write. Dance.” She recommends starting with your own self-care, before expanding it out to others. “Calm and center yourself with meditation, deep breathing, knitting – whatever soothes you. Then support others. Spread a contagion of joy, love and kindness! That’s what will get us through this turbulent time.”
One of the things that is helping me right now is to tell myself that this reality is not forever. Patient advocate, Liza Bernstein[16] reminds us that while “for now, #COVID19 feels like the entire world’s permanent reality… [but] within that, there are moments, nuances, and joy. There is hope, a delicious piece of chocolate, or a beautiful flower, or a hilarious meme, of if you’re lucky, a dog to play with, a loved one to hug (if you’re in the same home and healthy!)… or whatever floats your boat.”
The spread of coronavirus is a new and challenging event. Most people’s lives will change in some way over a period of days, weeks or months. But in time, it will pass. My wish for you today, especially if you are feeling anxious, alone, or fearful, is that you can find something to hold onto in this moment. To quote psychologist and breast cancer and SCAD survivor, Elizabeth McKenzie[17], “In this moment, as I write this, I have all that I need. I have my breath. I have my mind. I have my family. I have friends. I have shelter. I have clean water and good food. I have the nearby woods in which to walk. Not all moments are like this but right now it is.”
At Home Self-Care Tips for Parents During a Pandemic
[1] CDC. Coronavirus Disease 2019
[2] WHO. Mental Health and Psychosocial Considerations During
COVID-19 Outbreak In January 2020, The WHO declared the outbreak of a new coronavirus disease to be a Public Health Emergency of International Concern.
[3] Fred Hutch. Coronavirus: what cancer patients need to know
[4] Centers for Disease Control and Prevention. Are You at Higher Risk for Severe Illness?
[5] Fred Hutch. Lessons from cancer patients in the time of coronavirus
[6] Nancy’s Point. What Can Cancer Patients (or anyone) Do to Protect Themselves & Others During the COVID-19 Pandemic?
[7] The #CoronaVirusFacts / #DatosCoronaVirus Alliance unites more than 100 fact-checkers around the world in publishing, sharing and translating facts surrounding the novel coronavirus https://www.poynter.org/coronavirusfactsalliance.
[8] Cleveland Clinic. Find Out Your COVID-19 Risk
[9] Intermountain Healthcare. COVID-19 Symptom Checker.
[10]Dam.Mad. About Breast Cancer. Eat These 29 Foods to Help You Manage Stress
[11] Karin Sieger. Coping With Difficult Times.
[12] Live Science. Coronavirus: What is ‘flattening the curve,’ and will it work?
[13] https://quarantinechat.com
[14] Quarantine is the separation and restriction of movement of people who have potentially been exposed to a contagious disease to ascertain if they become unwell, so reducing the risk of them infecting others. This differs from isolation, which is the separation of people who have been diagnosed with a contagious disease from people who are not sick; however, the two terms are often used interchangeably, especially in communication with the public. The psychological impact of quarantine and how to reduce it: rapid review of the evidence
[15] Ticking Off Breast Cancer. Ways To Distract Yourself During Self-Isolation.
[16] It’s The Bunk. It’s #Covid19 – Start Where You Are
[17] My Eyes Are Up Here. All I Need
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
Last week, we hosted an Empowered #patientchat on “Cyber Hygiene: What Is It and Why Does It Matter?” with Casey Quinlan (@MightyCasey). The #patientchat community came together for an engaging discussion and shared what was their mind.
With the novel coronavirus rapidly spreading across the U.S, anxiety amongst those who are in the higher risk category is rising up. And with good reason, as there are many things that remain uncertain in regards to what the future hold for the medical system and especially for those who rely on it for reasons other than COVID-19.
While not everyone will get sick, just like in the case of influenza, there are people who are definitely more at risk of developing serious complications. People who are older, especially those who are over 70 and people with underlying health conditions, such as chronic lung diseases, cardiovascular diseases, diabetes, and cancer appear to be at higher risk for major complications. That includes admission to intensive care and even death. A recent study designed to understand the effects of COVID19 in relation to underlying diseases, analyzed 1590 cases in China, out of which patients with a history of cancer. Out of the group, 5 patients had lung cancer, 4 had received chemotherapy within the past month and 12 were cancer survivors with only routine follow-ups.
By comparison with non-cancer patients, the study observed that they were more susceptible to have severe complications that required invasive ventilation or led to death, with 7 (or 39%) out of the total 18 patients with a cancer history ending up in intensive care. However, the study also noted that patients with lung cancer did not have a higher probability of developing severe complications than patients with other types of cancer. Patients with cancer are in a high group risk because of their systemic immunosuppressive state that is caused by treatments such as chemotherapy. This is because, in the scenario that a cancer patient gets infected with COVID-19, the organs are practically getting attacked on two fronts rendering the body too weak to fight for maintaining a proper function of vital organs. Despite the fact that the novel coronavirus is labeled as an acute respiratory syndrome, it seems that more deaths have been caused by multiple organ dysfunction than respiratory failure.
For those currently undergoing chemotherapy, radiation, immunotherapies or any other active treatment for cancer, the risks of severe complications in case of getting infected with the novel coronavirus are very real. But these risks extend even beyond the period of active treatment, as the effects of these therapies don’t finish with the last round. These therapies are associated with reduced immunity and not just that, as they are very invasive. While chemotherapy kills cancer cells and it’s essential in battling cancer, it can also damage healthy cells, weaken the heart muscles, it can interfere with the body’s ability to produce healthy blood platelets as well as red and white blood cells and it can harm the kidneys.
People have already been advised to isolate at home and avoid contact with others as much as possible, but what happens with those who need to go to hospitals in order to receive the much-needed treatment? Their risk of getting infected is likely to increase. Dealing with infections while undergoing chemotherapy can lead to a potentially life-threatening complication called sepsis (an overwhelming body response to an infection that can cause tissue damage and organ failure) as your immune system is damaged and the number of white blood cells is very reduced, making it impossible to fight infection. The highest risk for infections is in the period after a chemotherapy session, between 7-12 days, when your white blood cells are extremely low and the body is extremely fragile. This period varies depending on which chemotherapy drug you are being treated with.
There are also a few other risk factors that could make it more possible to develop a severe reaction to an infection while white blood cell count is low:
It’s extremely important that if you develop any symptoms that resemble the ones of COVID-19, to call your doctor as soon as possible. But as it can be extremely dangerous for patients with a cancer history or chemotherapy to catch any kind of viral infection, you should try as much as you can to respect the recommendations of doctors and other health officials, especially considering how fast the virus is spreading.
Family is very important and avoiding them is a difficult task, but if someone in your household is sick or presenting specific COVID-19 symptoms, social distancing is extremely important. Be sure to have them sleep in a separate room, wear gloves around the house and a mask, constantly disinfect some areas of the house and wash your hand regularly. It’s also extremely important that if you need to go to the hospital for treatment, to not bring a sick family member with you.
Caregivers should be extra careful when it comes to hygiene and take all the necessary actions to protect cancer patients. Constantly follow the CDC guidelines on how to protect from the novel coronavirus and try to avoid any contact in case you start developing symptoms.
In terms of what you can do to help better your immune system, one of the first things you can do is make sure you get enough sleep. Sleep deprivation can severely suppress the immune system, so at least 6 (but ideally 8) hours of sleep a night can be vital.
Exercise can also help boost the immune system. Since going outside is not a good idea right now, you can try some yoga exercises or something that will get your heart pumping. Good nutrition is also very important, as 70 to 80 percent of our immune system is in the gastrointestinal tract and it’s directly impacted by what we eat. A balanced diet with fruits and vegetables is one of the best measures you can take to help your immune system.
Gregory A. Cade is the main attorney at Environmental Litigation Group P.C, a law firm dedicated to helping cancer victims who have developed the disease as a result of occupational exposure to toxic chemicals recover rightful compensation from those who put them at risk.
The drip-drip-dripping of the sink in the radiology room echoed loudly in my brain as I waited for the pathologist. I just had a biopsy done for two spots on my neck—one suspected to be cancerous. “A nodule,” my primary care physician had previously explained at my annual physical. The radiologist had comforted me, casually saying, “I wouldn’t worry, though. There’s only a ten to fifteen percent chance.”
In just a few minutes, I would be given my fate.
In January 2017, I was diagnosed with thyroid cancer. I met my surgeon five months later. “What you have is called a papillarycarcinoma,” he said. “Doesn’t cancer come from tumors?” I thought. I looked up some terms in the National Cancer Institute’s Dictionary of Cancer
The dictionary helped, but why weren’t these words explained to me by the doctors? It sounded like all the terms were being used interchangeably, and my brain was already feeling corrupted by the diagnosis—I was struggling to comprehend my diagnosis.
My bewilderment grew as I tried to understand how the thyroid hormones, T3 and T4, worked together with thyroglobulin (a biomarker), and the pituitary gland located in the brain. I understood what hypothyroidism vs. hyperthyroidism meant, but only because I knew the symptoms of each, and would be able to tell my doctor if I was experiencing any of them.
I was told by multiple doctors that I had the “good” type of cancer, and I felt hopeless and quite stupid for asking them to repeat what they had just said, or for asking them to explain a term or biological process in a different way.
Coincidentally, I had just started my fourth month of graduate school in a program focused on health communication—one of my first classes was writing for health communicators. That’s where I learned that, as of 2003, when the U.S. Department of Education measured health literacy of various populations across the country
It only gets worse for people living in poverty, the elderly, and racial minorities.
So how can we create health literacy equality among all populations?
The answer lies with patient advocacy and patient empowerment.
The doctor-patient relationship has changed significantly—for the better. Where once a patient relied on their doctor for information, to learn about a condition or a symptom, today, patients are finding this information online—and bringing their knowledge to appointments. They’re asking questions about their health and treatment paths. Some are even looking for answers about things that the doctor may not have heard of…yet!
As a health care professional, are you:
Most importantly, are you taking the time to listen to the patient’s concerns, and addressing them in a clear, understandable manner?
When doctors and health care providers take time to engage with them, patients feel more empowered to take charge of their health, and to become their own advocates. When the fearful become fearless is when real change happens.
Carly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University in Health Communication and received her Bachelor’s from George Mason University in Health Administration and Policy. While being diagnosed with the “C” word at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her health outcome, she looks to advocate for other cancer patients through education, research, and health literacy.
It’s Patient Empowerment Network’s (PEN) mission to improve health literacy, by helping you find credible health sources and make the best decisions for you and your loved ones.
The coronavirus (COVID-19) has officially been declared a pandemic by the World Health Organization (WHO) and it has created a frenzy of information. Details about the virus are spreading rapidly from every news outlet and being discussed worldwide.
Misinformation can lead to panic and fear, while credible information can help allay your fears. But, how can you identify trustworthy information? Let’s review steps to recognize quality sources to help reduce anxiety during this confusing time.
Referred to as an “infodemic” by the World Health Organization, it is an over-abundance of information – some accurate and some not – that makes it hard for people to find trustworthy sources and reliable guidance when they need it.
Telemedicine is the practice of medicine via technology to get care from a distance. Your healthcare professional can be in one location and use a video-chat technology (i.e. Skype, Zoom, etc.) to deliver care remotely. Given these uncertain times, more medical centers maybe offering this option to prevent further spread of the virus. The benefits of a virtual office visit include:
To see what’s available to you, reach out to your doctor either via your Patient Portal or phone and follow your medical center closely via the web or social media. It’s likely they will be working to raise awareness of this option when it becomes available to patients. The bottom line: if you can avoid visiting an emergency room or hospital, take advantage.
There are many tried and true methods for preventing the spread and contraction of illness, such as washing your hands often, avoiding touching your face, and keeping frequently touched surfaces disinfected. For more tips and details on prevention, visit the CDC Website here: https://www.cdc.gov/coronavirus/2019-ncov/about/prevention.html.
Health Content Collective was founded by Thea Burris and Jamie Machala, and provides communications services to the healthcare community. Health Content Collective has fostered long-term relationships with numerous academic medical centers, key opinion leaders, and advocacy groups. Coupled with more than 30 years of involvement in healthcare education & marketing, we have a comprehensive and specialized understanding of the unique needs of the medical and patient communities.
Last week, we hosted an Empowered #patientchat on “Removing Barriers to a Successful Patient-Provider Relationship”. The #patientchat community came together for an engaging discussion and shared what was their mind.
As with many other cancers, leukemia is not a singular disease. There are many types of leukemia, and while it is a common childhood cancer, leukemia actually occurs more often in older adults. Leukemia is the most common cancer in people under the age of 15, but it is most likely to affect people who are 55 or older. There are more than 60,000 cases of adult leukemia diagnosed each year, and it is more common among men than women.
Leukemia is a broad term that describes cancer of the blood or bone marrow. It starts when the DNA of developing blood cells are damaged and the bone marrow makes abnormal cells. The abnormal blood cells are the leukemia cells which grow and divide uncontrollably. Unlike healthy cells that follow a life cycle, the leukemia cells don’t die when they are supposed to so they continue to build up, eventually overcrowding the blood. They crowd out normal white blood cells, red blood cells, and platelets so those normal cells can’t grow and function. Eventually, there are more cancer cells than healthy cells in the blood. The type of leukemia is determined based on which blood cells are affected by the abnormal cells. Leukemia usually affects the white blood cells, called leukocytes, but can occur in other blood cells. There are four main types of leukemia: chronic, acute, lymphocytic, and myelogenous.
Leukemia that grows slowly is called chronic leukemia. The cancer cells form very slowly so the body can also continue to form healthy cells, but over time the cancer cells continue to grow and the leukemia worsens.
Acute leukemia grows very quickly and gets worse really fast. It has been identified as the most rapidly progressing cancer, and it can develop and grow in a matter of days or weeks.
Lymphocytic leukemia forms in the part of the bone marrow that makes lymphocytes, which are white blood cells that are also immune cells. Chronic lymphocytic leukemia (CLL) is most common in older adults and makes up about 25 percent of adult leukemia cases. It is more common in men than women and is very rare in children. Acute lymphoblastic leukemia (ALL) also affects older adults, but children younger than five have the highest risk of developing it.
Myelogenous leukemia forms in the bone marrow cells that produce blood cells, rather than forming in the actual blood cells. Chronic myelogenous leukemia (CML) accounts for about 15 percent of all leukemia cases in the United States. CML develops mostly in adults and is very rare in children. Acute myelogenous leukemia (AML) is a rare cancer that develops quickly with symptoms of fever, difficulty breathing, and pain in the joints. It can be caused by environmental factors, and develops more often in adults than children, and more often in men than women.
There are also several less common types of leukemia. Most of these types are chronic, and each year in the United States, about 6,000 cases of these less common leukemias are diagnosed.
There are several risk factors linked to leukemia. There are environmental factors and genetic reasons why some people might develop leukemia. Some of the factors can be controlled while others can not. Age, smoking history, and exposure to hazardous chemicals are all possible risk factors. Other risk factors may include exposure to chemicals or medical treatments, personal health history, and family history. Some of the possible risk factors need more study to determine a definite link to leukemia, but being aware of your potential risk is important.
If you were exposed to chemotherapy or radiation therapy for another cancer you have a higher chance of getting leukemia later in life. Also, children who took medications to suppress their immune systems, such as after an organ transplant, may develop leukemia. Exposure to chemicals such as benzene and formaldehyde, often found in cleaning products, hair dyes, and embalming fluid, may also increase your risk of developing leukemia. Smoking and exposure to workplace chemicals like gasoline, diesel and pesticides could also be a risk factor.
There are several syndromes, conditions, and genetic disorders that can also increase leukemia risk. Li-Fraumeni syndrome, a hereditary disorder, is linked to leukemia, and children with Down syndrome have a two to three percent increased risk of developing acute myeloid or acute lymphocytic leukemia. Other genetic disorders that increase leukemia risk are Fanconi anemia, and dyskeratosis congenita (DKC). The inherited immune system conditions ataxia-telangiectasia, Bloom syndrome, Schwachmai-Diamond syndrome, and Wiskott-Aldrich syndrome also increase the risk of leukemia. Risk is also increased in patients with a history of blood disorders such as myelodysplastic syndrome, myeloproliferative neoplasm, and aplastic anemia. There are also viruses, such as the human T-lymphotropic virus (HTLV-1), linked to leukemia.
Family history can also play a role in the development of leukemia. Having a sibling with leukemia is a risk factor, and having an identical twin with leukemia gives you a one in five chance of developing it yourself.
There are no known ways to prevent leukemia; however, being aware of risk factors and attempting to reduce them could help. Studies have linked leukemia to smoking and obesity, so quitting smoking and having a healthy body weight could help prevent leukemia. In addition, avoiding heavy exposure to dangerous chemicals might decrease your risk.
There are no reliable early screening methods for leukemia and, especially in chronic leukemia, the symptoms may not be very noticeable early on. Symptoms such as fatigue and fever may not be alarming at first, and could be mistakenly attributed to other causes. Acute leukemia symptoms come on faster and are typically more noticeable. All types of leukemia can have similar symptoms, but the symptoms each individual patient has can help determine the type of leukemia. Any symptoms should be checked by a doctor.
The most common symptoms of leukemia are:
Leukemia can cause several serious complications due to the nature of the disease and treatment. Complications such as life-threatening infections can occur when white blood cells are damaged or reduced. When white blood cells aren’t fully functioning, the body can’t properly fight infections, so any infections a leukemia patient gets, such as urinary tract infections or pneumonia, can become very serious. Low platelet counts make bleeding in areas such as the brain, the lungs, and the stomach or intestines very dangerous, while high white blood cell counts can cause leukemia cells to spill over from the blood into other organs possibly causing respiratory failure, stroke, or heart attack.
There are other complications that are related to specific types of leukemia. Notably, the development of secondary cancers and blood cancers are more likely in CLL patients. Another complication of CLL is called a Richter transformation in which the cells can transform into an aggressive form of lymphoma. Kidney failure can be a treatment-related complication of AML or ALL.
Leukemia can’t be diagnosed based solely on symptoms, but if leukemia is suspected, in a general exam, the doctor will look for an enlarged spleen or liver and take a blood sample. Further diagnostic testing may include a bone marrow test where a long needle is used to extract marrow from the center of a bone (usually the hip). The bone marrow test will help determine if the patient has leukemia and the type of leukemia.
Staging is used to identify the size and location of cancer in the body. Typically cancers have four stages with Stage I usually indicating the cancer is in one location and is not very large. Stage IV indicates the cancer has grown large and spread far from the original location. Most leukemias aren’t usually staged because they are in the blood and therefore have already spread throughout the body. Instead, leukemia can be considered untreated, active, in remission, or recurrent. The exception is CLL, which can spread through the lymph nodes or the blood or bone marrow, so it does have three stages.
The earlier treatment starts for leukemia, the better chance of remission. However, thanks to some exceptional advancements in leukemia treatment medications, doctors are often able to take the time they need to come up with the best treatment plan for each individual with leukemia, even in cases of acute leukemia if life-threatening complications are not present. When coming up with a treatment plan, doctors consider the patient’s age, overall health, and most importantly, the type of leukemia the patient has.
Leukemia treatment options vary for each type of cancer:
Watchful Waiting is used when treatment for slower growing leukemias, such as CLL, may not be necessary;
Chemotherapy is the primary treatment for AML, and sometimes a bone marrow transplant is needed;
Targeted therapies are medications that are tyrosine kinase inhibitors which target cancer cells, but don’t affect healthy cells. Targeted therapies have less side effects. Many CML patients have a gene mutation that responds very well to targeted therapy;
Interferon therapy is a drug that acts similar to a naturally occurring immune response which slows and then stops the leukemia cells. This therapy can cause severe side effects;
Radiation therapy is often used in ALL to kill bone marrow tissue before a transplant is done;
Surgery to remove the spleen may be necessary, depending on the type of leukemia;
Stem cell transplant is effective in treating CML and is usually more successful in younger patients. After chemotherapy or radiation or both are used to destroy the bone marrow, new stem cells are implanted into the bone marrow so noncancerous cells can grow.
Treatment for acute leukemia can take up to two years. It is usually done in phases. In the first phase the goal is to use chemotherapy for several weeks to kill the cancer cells and put the patient in remission. The second phase is designed to kill any remaining cancer cells using chemotherapy or stem cell transplant or both. The treatments and their side effects can be pretty harsh for older patients so researchers have been focusing on finding targeted therapies for acute leukemia, which have fewer side effects. Researchers are also hoping CAR T-cell therapy, which uses the patient’s own immune system to treat cancer, could be an eventual replacement for stem cell replacement therapy in older ALL patients. AML is more aggressive and often harder to treat, but several new targeted medications have been approved to treat AML. Researchers continue to look at other targeted therapy options and other drugs for AML.
In some cases of chronic leukemia, a stem cell transplant might be required, but the main treatment is oral medications that patients will probably take for the rest of their lives. Some research is investigating whether or not patients could potentially stop taking the medications at a certain point.
CML treatments have really advanced and there are now several drugs that target the abnormal protein that causes CML. Thanks to these targeted medications CML patients now have a close to normal life expectancy and a 90 percent five-year survival rate. Clinical trials are looking at using targeted therapies to treat CLL as well and CAR T-cell therapies are also being considered for CLL treatment.
Leukemia represents 3.5 percent of all new cancer cases in the United States, and it is the seventh leading cause of cancer death. The outlook for leukemia patients depends on which type of leukemia they have, their overall health, and their age. Leukemia is more likely to be fatal in older patients. The average age of those who die from leukemia is 75. However, the many advances in treatment options and medications, such as targeted therapies, have created a better prognosis for many. Leukemia has a 62.7 percent five-year survival rate, and some people with leukemia can now achieve complete remission.
Sources
Felman, Adam. “What to Know About Leukemia” Medical News Today, medically reviewed August 28, 2019, https://www.medicalnewstoday.com/articles/142595. Accessed March 9, 2020.
Raymaakers, Karen. “Symptoms of Leukemia” Verywell Health, medically reviewed November 1, 2019, https://www.verywellhealth.com/leukemia-signs-and-symptoms-2252435. Accessed March 9, 2020.
“Adult Leukemia: What You Need to Know” Dana-Farber Cancer Institute, updated December 5, 2019, https://blog.dana-farber.org/insight/2019/11/adult-leukemia-five-things-you-need-to-know/. Accessed March 9, 2020.
Wang, Eunice. “How Fast Does Leukemia Develop” Roswell Park Comprehensive Cancer Center, October 4, 2018, https://www.roswellpark.org/cancertalk/201810/how-fast-does-leukemia-develop. Accessed March 9, 2020.
“Reducing Your Risk for Leukemia” Canadian Cancer Society, https://www.cancer.ca/en/cancer-information/cancer-type/leukemia/risks/reducing-your-risk/?region=on. Accessed March 9, 2020.
“Risk Factors for Leukemia” Canadian Cancer Society, https://www.cancer.ca/en/cancer-information/cancer-type/leukemia/risks/?region=on. Accessed March 9, 2020.
Stöppler, Melissa Conrad. “Leukemia” MedicineNet, medically reviewed September 11, 2019, https://www.medicinenet.com/leukemia/article.htm. Accessed March 9, 2020.
“Leukemia Screening” Moffitt Cancer Center, https://moffitt.org/cancers/leukemia/diagnosis/screening/. Accessed March 9, 2020.
“Leukemia — Patient Version” National Cancer Institute, https://www.cancer.gov/types/leukemia. Accessed March 9, 2020.
“Cancer Stat Facts — Leukemia” National Cancer Institute Surveillance, Epidemiology, and End Results Program, https://seer.cancer.gov/statfacts/html/leuks.html. Accessed March 9, 2020.
“Advances in Leukemia Research” National Cancer Institute, June 25, 2019,https://www.cancer.gov/types/leukemia/research. Accessed March 9, 2020.
