A rare disease, also known as an orphan disease, is any disease, disorder, illness, or condition that affects fewer than 200,000 people in the United States. Although the disease may be rare, patients and families share a common struggle. For more facts and statistics about rare diseases, please check out NORD’s Rare Disease Fact Sheet.
This year’s global theme ‘Bridging Health and Social Care’. Focusing on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day. In the United States, the official symbol of rare diseases is the zebra for its black and white stripes, which are central to its uniqueness.
Rare Disease Day is for every, and below are some ways to participate:
Share your own story of life with a rare disease
Check out different graphics to post on your social media accounts
Share posts from other people and organizations to increase awareness
Join in on a local Rare Disease Day event
Raise awareness on social media (#ShowYourRare, #ShowYourStripes, #RareDiseaseDay, #Pledge4Rare, #CareForRare)
Your health is influenced by viruses and bacteria, your genes and your environment – which are not all within your control. But lifestyle factors also play an important role in developing and preventing illness. Have a look at some simple steps you can take to significantly improve your health and prevention of cancer, cardiovascular disease, diabetes, and other age-related disease.
1. Reach and Keep A Health Weight
Reaching a desirable body weight is a huge first step in improving your health and resistance to preventable degenerative diseases such as cancer, cardiovascular disease, diabetes, periodontal gum disease, macular degeneration, and other age-related maladies.
You can find many charts online that calculate your body mass index (BMI) based on your height and weight. To fall in a healthful range, your BMI should be between 18.5 and 24.9. Reducing your body weight decreases the stress on your cardiovascular system and also lowers your risk to heart disease, since fatty tissues contain high levels of reactive oxygen species called free radicals. These free radicals age your cardiovascular system, cause deposits of plaque in your arteries, and damage your DNA, resulting in several types of cancer.
Therefore, having a lower body mass and less fatty tissue reduces the number of free radicals in your body, which in turn reduces the aging of your body and improves your protection against these degenerative diseases.
2. Begin a Regular Exercise Program
After consulting your physician or healthcare provider, you should start a regular exercise program. You don’t need to run a marathon or workout 8 hours in the gym every day. Just a sensible exercise program that includes aerobic exercise (which stimulates the cardiovascular system) and anaerobic (muscle-strengthening) exercise. And remember, you don’t need to do it all at once. Most health experts recommend 30 minutes of vigorous exercises three times a week. Your exercise program could include walking, hiking, running, aerobics, playing vigorous sports such as tennis and golf, and workouts in the gym. By exercising, you will burn calories that otherwise would be accumulated as body weight and reduce your BMI. Aerobic exercises also have the added benefit of suppressing your appetite.
3. Improve Your Diet
All of you know what happens to apples once they are sliced – they turn brown due to oxidation from free radicals. A common way to prevent this oxidation process is to pour lemon juice onto the slices, thereby keeping the apple slices looking fresh. Lemon juice contains vitamin C, an antioxidant that neutralizes free radicals and prevents damage to the apple slices. Similarly, this is the exactly what happens in the human body: free radicals are generated, causing aging of our bodies and age-related diseases such as cancer and heart disease.
As you probably guessed, our bodies also produced protective antioxidants that minimize damage from free radicals. How many antioxidants do our bodies produce ? Well, the levels depend on many factors: our genetics, our diet, stress levels, and such factors as sun exposure, radiation, exercise, and others. As it turns out, our diet is hugely influential on levels of these valuable antioxidants. And generally speaking, our Western fast-paced lifestyle with fast food diets increases our risk of getting cancer, heart attacks, strokes, diabetes, and other age-related diseases. Our bodies simply were not designed to eat the mass quantities of fried, fatty, and sugary foods we now consume. However, there is an answer to preventing the scary degenerative diseases. We need to replace these unhealthy fatty and sugary foods with raw food such as fresh fruits and vegetables since these are all foods contain high levels of natural antioxidants.
4. Have Your Body Antioxidant Level Scanned
Until about 8 years ago, it was almost impossible to know the actual state of our immune system and how well we were preventing degenerative diseases. Prior to that time it was possible to submit a blood or tissue sample to be subjected to an expensive and time-consuming laboratory analysis called HPLC to determine body antioxidant levels. However, due to cost factors and the fact that almost no one wanted to submit a painful and invasive blood and tissue samples to determine their antioxidants scores, very few people had much of an idea of how healthy they actually were.
All of this changed with the development and release of a small, portable machine that painlessly and inexpensively scans the palm of the hand to arrive at a skin antioxidant score. Also, this skin antioxidant score has been proven through hundreds of independent studies to prove a measure of overall body antioxidant scores. So wha this means is that for the first time we can now determine our body antioxidant scores non-invasively to see how well we are resisting aging processes and protecting ourselves against cancers and cardiovascular disease. But even more importantly, we can now quantitatively measure the changes we make in our lives such as reduce stress, improve diet, exercise, and environmental factors. This is certainly groundbreaking in that we can take steps to prevent these types of diseases. The antioxidants found in green tea make it one of the healthiest beverages which produce powerful effects in your body. The beneficial effects of it include improved brain function, loss of excess fat, reduced risk of cancer, and many other unbelievable benefits.
5. Take Dietary Supplements
Science has allowed us to take plants and concentrate their naturally occurring antioxidants into pill form so that we can vastly increase our antioxidant levels. Most of you are aware of vitamin and mineral supplements that promise to raise our antioxidant levels, however, until the advent of skin antioxidant scanner, no one could effectively know how well the supplements actually raise antioxidant levels nor would the manufacturers guarantee that the supplements were effective. Now that we have the scanner, we can answer these questions quantitatively. Moreover, we can also design supplements that are proven to raise body antioxidant scores and result in disease protection along with a money-back guarantee that your scores will increase.
6. Take Genetic Expression Supplements
Some of you may be aware that the US government poured billions of dollars into the Human Genome Project that was completed in the year 2000. this project allowed for the sequencing of genes contained in our DNA. It is these genes that produce (express) in a pattern that make each one of us the unique and individual that we are. Accordingly, many companies have identified single or groups of genes that Express these proteins in the attempt to determine which genes are responsible for certain characteristics and life processes. then we can influence these genes to change their activity, and therefore, our characteristics. While we cannot change our genes, we can indeed change their expression. One advanced company has identified 52 genes and our mitochondrial DNA involved with cellular energy processes that are responsible for natural aging processes.
A fitness enthusiast since her early childhood days and has always believed in the benefits of a healthy lifestyle. Her mission is to teach people to lead a healthy life and raise awareness on the importance of general health, wellness, and fitness.
https://powerfulpatients.org/pen/wp-content/uploads/Disease-Prevention.png600600Ellianhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngEllian2019-02-27 16:58:512019-09-02 12:28:436 Effective Ways to Prevent Degenerative Diseases
At this point in the year many of us have already given up on our New Year’s resolutions, but if your resolution was to lose weight this year, it might be time to revisit it, especially if you are a young adult. A study reported by cnn.com reveals that obesity-related cancers are increasing among the 24 to 49 year old age group, and the risk is increasing at progressively younger ages. There are six cancers that showed increases in younger adults — colorectal, endometrial, gallbladder, kidney, pancreatic, and multiple myeloma. These cancers are traditionally found in people in their 60s and 70s, but now the risk of these cancers in millennials is almost double what it was for baby boomers when they were the same age. More information about the study and the connection between obesity and cancer can be found here.
The increase in cancer rates in younger adults is alarming, but being able to detect the disease at an earlier stage increases the chance for survival. Pancreatic cancer is a cancer that is difficult to diagnose early. It is almost always diagnosed at an advanced stage and about 95 percent of people diagnosed with it will die of it. Now, Norwegian researchers may have a clue into better understanding pancreatic cancer which could eventually lead to earlier diagnosis, reports sciencenordic.com. The researchers learned that there may be a connection between blood type and pancreatic cancer. People with blood type A have a slightly increased pancreatic cancer risk and people with blood type O seem to have a slight protection from the disease. The differences in risk are small, but the data is consistent to studies in other countries and may provide insight into better understanding the disease. Researchers hypothesize that intestinal flora, the immune system, and digestive enzymes may play a role in the contraction of the disease and give researchers a direction for further study. Learn more here.
While not on the list of cancers being found more often in younger adults, prostate cancer remains the most common cancer among men. Typically, it can be successfully treated, but the cancer often spreads making more aggressive treatment necessary. Unfortunately, there’s been no way of knowing when or if the cancer will spread — until now. There’s a specific gene responsible for the spread of prostate cancer, reports medicalxpress.com, and a study at Rutgers University has found it. The NSD2 gene, which indicates when patients are at high-risk for the cancer to spread, was found through a computer algorithm. Researchers were able to turn off the gene in mice and prevent the cancer from spreading. Being able to identify when the cancer may spread will allow for more targeted treatment and prevention. Also, it might be possible to use the algorithm for other cancers as well, which is good news for everyone. More information about the NSD2 gene and the computer algorithm can be found here.
No matter what age someone gets cancer, pain can often be a side-effect of the cancer itself or of the treatment. Pain occurs in up to 50 percent of people with cancer. Cancer-related pain is real, and it can last long after treatment, but cancer.gov says that there is renewed interest in seeking new, non-addictive pain medications, as well as other pain management solutions, for cancer patients and survivors. Medications are being developed, and options such as cannabinoids (chemicals found in marijuana), are being explored to treat bone pain and pain in the head and neck from oral cancers. Pain is also a side-effect of treatments such as chemotherapy, and prevention is being sought for that type of pain as well. Non-drug treatments that are being considered are yoga, Tai Chi, and mindfulness meditation. There is much, much more to be explored about the potential for pain management, but more about what is already being done can be found here.
Alleviating the pain of cancer whether through pain management, early diagnosis, or preventing the disease from spreading is definitely a step in the right direction for ensuring that all patients are empowered patients.
Social media is a powerful addition to our patient advocacy toolbox. We can use it to raise awareness of our cause, build a community of supporters, promote our key messages and highlight our patient advocacy activities. To help you strengthen your online presence and create more visibility for your cause, I’ve put together this list of ten actionable tips you can put into practice right away.
1. Optimize Your Social Profiles
Your social media profile should be considered a key element of your advocacy brand. What will people’s first impression be of you when they encounter your online profile? What might make them decide to follow you? Review each of your existing social profiles with the following points in mind.
Is it time to use a more professional picture to represent yourself online? Upload an image that is clear and easy to see, like a head and shoulders shot, or your organization’s logo. Make sure to upload images with the correct dimensions for each social platform (check out this guide to social media image sizes).
You have an opportunity to personalize your profile on Facebook and Twitter by uploading a custom header image. Use this opportunity to bring more authenticity to your account, for example you might use a picture of yourself holding a sign with a hard-hitting message. Or perhaps there’s a project or campaign you are currently working on. If so, include an image to represent this in the header space.
Take Action: Complete all sections of your profile to convey a stronger message and identity. Schedule a review date every few months to check your information is still current.
2. Focus on Being the Expert One Platform at a Time
Each year brings shiny new social media tools and new features for existing tools. It’s tempting to jump on board the latest social media platform with the aim of being everywhere at once; but rather than spreading yourself too thinly, focus on mastering one or two platforms really well before moving on to the next one.
Take Action: Look back on the past six months and ask yourself which social media platform worked best for you? Which gave you the most engagement? And which platform had the least engagement? Consider focussing your efforts on the high-performing platform and becoming known as the go-to expert on this channel before adding anything new to your social media mix.
3. Schedule Your Social Media Posts
The internet is global and if you want your message to reach further than your own backyard, you need to hit multiple time zones. Tweets have the shortest lifespan of any social media post. Even though the latest Twitter algorithm means that posts are no longer displayed chronologically, Twitter is fast-paced, and messages get buried quickly. To counter this, you need to share your post multiple times on Twitter to increase visibility. Scheduling tweets allows you to reach followers when they are most likely to be online (even if you aren’t there at the same time) and allows you to maintain a regular and consistent online presence.
Take Action: Use a scheduling tool like Buffer or Hootsuite to schedule your updates to reach more people, more often. Don’t just post the same update every time. Vary your updates by changing around the headline, highlighting a statistic or quotation or adding different images.
4. Curate Content
The ability to curate credible content to share with our communities is a key skill for patient advocates. Hereditary cancer advocate, Amy Byer Shainman believes “patient advocates not only have a responsibility to curate trusted content but that it is an imperative if you are even going to be calling yourself a patient advocate.”
Content curation is defined as the process of gathering information relevant to a particular topic or area of interest. While this definition sounds simple, there’s a world of difference between simply gathering information and being an effective curator. A good curator knows how to find, aggregate, and synthesize reliable information, putting it into context for their communities and sharing it in a format that is easy to access and understand.
Take Action: Set up Google Alerts for the healthcare topics of interest to you. Google Scholar is also useful as it indexes most peer-reviewed online journals of Europe and America’s largest scholarly publishers.
5. Create Visual Impact
You’ve surely heard this before, but it’s worth reiterating: images matter — a lot. In an age when people’s attention span averages 8 seconds (that’s shorter than a goldfish!) visuals are memorable and effective because they help people process, understand, and retain more information more quickly.
Visual content is 40x more likely to get shared on social media than other types of content according to research by Buffer. Furthermore, people connect more emotionally with images than text, and in an increasingly crowded digital landscape images can break through the online content clutter. The type of visual assets you can create include images, videos, infographics, quotes and GIFs.
Hashtags are a powerful way to increase your visibility on social media. According to Twitter’s own research tweets with hashtags show a 100 percent increase in engagement (clicks, retweets, likes and replies). Jo Taylor, a moderator of the UK-based breast cancer Twitter chat #BCCWW, explains that “finding disease hashtags opens up connections. If you connect with others you will be able to meet others easily online and you will build and learn from there.”
Reporting live from an event is a way of engaging your followers by sending updates about an event as it occurs. It allows you to expand the reach of in-person events to provide valuable insights to those who are unable to attend in person. It’s also a way to increase your visibility as an attendee and enhance your credibility.
Live reporting tools include live-streaming using Facebook Live, Instagram Live, and Periscope (Twitter’s live-streaming app). You can also share posts to your Facebook page and share photos and video clips via Instagram and Snapchat during the event.
Twitter thrives on its community and the more you connect with other users the more quickly you will grow your own following. Joining a Twitter chat is a super way to connect and engage. When you attend a Twitter chat regularly, people will get to know you and in this way, you can quickly develop and grow your own network of supporters. If you’re not familiar with them, a Twitter Chat is a public Twitter conversation around one unique hashtag. This hashtag allows you to follow the discussion and participate in it.
Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people, for example #PatientChat held every other Friday at 10:00 am Pacific/1:00 pm Eastern. The chat will be hosted and the host will ask questions along the way to stimulate discussion and sharing of ideas. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. This is also a useful resource to find Twitter users to follow. In addition you will find past transcripts of chats on the website so you can familiarize yourself with the chat and its norms before taking part.
Take Action: There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. And “if you can’t find a tweet chat you enjoy,” recommends patient advocate, Annette McKinnon, “start a new one, register it @symplur and build a new community.”
9. Create a YouTube Channel
People engage with video more than any other form of content (written, audio, images, etc.). YouTube with more than 1.8 billion monthly active users remains the online video leader. 4 million YouTube videos are viewed every day, and the average session duration of 9 minutes and 28 seconds. That’s more than many other social networks.
Take Action:While producing your own video may seem daunting, video creation has never been more accessible through smartphones. You can also create simple videos for your channel using free tools such as Adobe Spark and Lumen5 (see my YouTube channel for examples of Lumen5 videos).
10. Maintain a Consistent Content Creation and Promotion Schedule
Social media is an ongoing commitment. You need to post consistently to stay in front of your audience’s eyes and keep growing. One key to maintaining a steady stream of quality content is to re-purpose what you already have. Check your blog’s analytics (or Twitter and Facebook analytics) to see the most popular posts you’ve written or shared. Can you expand on these to include new research or thinking? Perhaps the content can be turned into an infographic or a slide-deck.
Take Action:Set aside one day each month to map out upcoming cause awareness days. Then use a simple excel spread sheet to create a calendar for social media postings. Include relevant hashtags and images. A content calendar helps you maintain a consistent content production schedule, enabling you to plan for seasonal content, and annual campaigns.
Social media is an ever-evolving and fast-moving field, and with so much to learn and do, it’s easy to feel overwhelmed. You don’t have to implement all these tips at once. Try adding one new strategy to your social media plan each week and measure its impact at the end of each month. This way you will know which of these strategies are moving you closer to a stronger online presence.
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. A board member of the Patient Empowerment Foundation, a network of people, foundations, organizations and medical institutions dedicated to empowering patients worldwide, 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.
https://powerfulpatients.org/pen/wp-content/uploads/Patient-advocacy_.png600600Marie Ennis-O'Connorhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngMarie Ennis-O'Connor2019-02-25 17:02:232019-09-02 12:34:33Patient Advocacy: Ten Tips to Develop a Stronger Social Media Presence
Cancer is a much more common disease than we’d like to believe. According to the National Cancer Institute, 38.4% of the people in the United States will be diagnosed with some kind of cancer during their lifetime – that’s 125,068,800 people out of our current population.
Some of the most prevalent forms of cancers among seniors are breast cancer, colon cancer, and lung cancer. Because aging can bring a higher risk factor for certain cancers, it’s important you know how well Medicare covers cancer. Fortunately, Medicare covers cancer quite well.
Common Cancer Treatments and Services
First, let’s talk about treatments and services that most cancer patients receive. This will help you to understand how specific procedures are covered under Medicare. Below is a short list of treatments, services, procedures, etc. that cancer patients may receive.
DME (durable medical equipment)
In-patient hospital stays
Skilled Nursing Facility (SNF) care
It’s true that Medicare covers most treatments, procedures, and services needed for managing cancer, but you need to know more than that. You should learn how each service is covered and how much you’ll pay for it.
While it’s hard to know for sure how much you will pay down to the cent due to certain factors, you can at least get a ballpark estimate of what you can expect to spend.
Medicare Part A Coverage
In short, Medicare Part A covers your in-patient hospital stays. In addition, stays at an SNF and hospice care are also covered under Part A among a few other things.
This may not seem like much for an entire part of Medicare to cover; however, if you think about how expensive these services are, it’s easier to understand. Also, depending on how recently you have left the hospital, there are times that Part A could cover things like DME and home health care too.
Costs Under Part A
Like all other parts of Medicare, Part A has a deductible. However, you will soon learn the Medicare Part A deductible is unlike any other deductible in Medicare. Most deductibles are annual; however, Part A’s deductible is per benefit period.
What this means is that if you go to the hospital multiple times a year, you could experience multiple benefit periods, and that means you could pay the Part A deductible more than once a year. As of 2019, the Part A deductible is $1,364.
The $1,364 deductible pays for your first 60 days in the hospital. If you stay in the hospital for more than 60 days, you will owe a daily copay. The daily copay for Part A start at $341 and increases to $682 after day 90.
The deductible also covers your first 20 days in an SNF if your doctor sends you to one to finish out your recovery. If your SNF stay is longer than 20 days, you will pay a daily copay of $170.50.
All costs after 150 days in the hospital or 100 days in an SNF are your responsibility.
Medicare Part B Coverage
Medicare Part B covers your outpatient services, treatments, procedures, and then some. They even cover some things while you’re in the hospital. Things like chemotherapy, radiation, surgery, and oncologist visits are all examples of things that can be covered under Part B.
Costs Under Part B
Medicare Part B has a monthly premium that is based on your income. Most people pay $135.50 each month in 2019 for Part B. The annual deductible for Part B in 2019 is $185.
Once you have paid your deductible, Part B will cover 80% of the cost for Medicare-covered services and treatments, like the ones listed above. The other 20% of the cost is your responsibility. Sometimes you can incur Part B charges while you are in the hospital, such as when a physician performs an outpatient surgery or you are using a hospital facility to get a diagnostic imaging scan, which is covered under Part B.
Let’s look at an example. Joe goes to the hospital for a minimally invasive surgery. He stays in the hospital overnight for observation. He will pay his Part A deductible of $1,364, his Part B deductible of $185, and 20% of the cost for the surgery and any other Part B services provided to him while in the hospital.
Medicare Plans That Can Help
Just from that one surgery, Joe could be paying thousands of dollars out-of-pocket. However, if he had a Medicare plan, he could be better protected from having to empty out his wallet.
Medicare Supplement plans, also known as Medigap plans, help cover the patients from having to spend so much out-of-pocket. A Medigap plan could potentially eliminate all of the costs that Joe would normally have to cover himself.
A few Medigap plans that could help Joe immensely are Plan F, Plan G, and Plan N. Plan F would cover everything mentioned above, while Plan G would cover everything except the $185 Part B deductible.
Most people only get one opportunity to enroll in a Medigap plan with guaranteed approval. So, if you have been diagnosed with cancer before becoming eligible for Medicare, you should enroll in a Medigap plan during this one-time open enrollment window.
Medicare Advantage Plans
Because Medigap plans usually have a higher premium, some people elect a Medicare Advantage plan instead. As long as you have one or the other you will be able to have extra coverage.
Medicare Advantage plans provide extra coverage in a few ways such as providing additional benefits, offering lower copays, and including a maximum out-of-pocket. In 2019, the set maximum out-of-pocket spending limit is $6,700 for in-network services.
This means, even if you can’t afford a Medigap plan, you will at least be covered from spending more than $6,700 for in-network services in any given year.
It takes some research to decide whether a Medicare Advantage or Medigap plan is the right fit for you, so make sure you learn how each type of coverage works before you choose a plan.
Medicare Part D Coverage
Part D is the part of Medicare that is in charge of your drug coverage – well, most of it anyway. There are some cases in which Part B would cover your medications, but we will get into that in a little bit.
Costs Under Part D
Each Part D plan has a premium. Currently, the national average for Part D monthly premiums is $35. You also have an annual deductible included in your Part D drug plan. In 2019, the maximum deductible a plan can set is $415.
After you have met your deductible you will move into the second stage of your Part D plan called the initial coverage stage. During this stage, you will pay copays for drugs covered under your plan. The copay you pay for any given drug depends on the tier the plan has the drug classified as.
After you and the carrier together have spent $3,820, you will move into the coverage gap. During this stage, you will pay a specified percentage depending on what type of drug it is, brand-name or generic.
Once your out-of-pocket spending hits $5,100, you’ll move into the catastrophic coverage stage which is the stage you will remain in until January 1st. In the catastrophic coverage stage, you will pay no more than 5 percent of your drug costs.
Drugs Covered Under Part B
Medicare Part B covers medications that are administered to you in a medical office setting. For example, chemotherapy is administered to you, therefore, Part B covers it, not Part D.
Think of Part D as your drug coverage for prescriptions you pick up at the pharmacy yourself. However, even Part B covers some of those.
Better Safe Than Sorry
We hear all the time, unfortunately, of how someone didn’t get Medicare Part D when they were first eligible because they weren’t taking any medications at that time. Well later, come to find out, they have been diagnosed with cancer and now must wait until the fall election period to enroll in a Part D drug plan.
Since they waited, not only will they have a lifelong late penalty tacked onto their premium, they have to pay 100% out-of-pocket from their medications until they get enrolled in a plan.
The potential of being diagnosed with cancer is also a reason why you should enroll in a Medigap plan when you are first eligible. Like we mentioned earlier, if you wait until it’s too late, you will be denied coverage due to your diagnosis. It’s always better to be safe than sorry.
Danielle Roberts is the co-founder of Boomer Benefits, where her team helps Baby Boomers navigate their new Medicare benefits.
https://powerfulpatients.org/pen/wp-content/uploads/Medicare.png600600Danielle Robertshttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngDanielle Roberts2019-02-22 12:27:092019-09-02 12:28:43How Medicare Covers Cancer in 2019
First, full disclosure: I’m not a member of the armed forces. I am a member of a multi-generation career military family, though, so my syntax is flavored with warrior-isms, from throw-weight to battle-ready.
I’ll ask you this: are you battle-ready for an engagement with cancer? I can say that I was not fully prepared for my own personal war on cancer, but who is really ready to hear their name and the word “cancer” in a sentence? It’s a subject that anyone who plans to live past 40 should become intimately familiar with, though, because every day you live on the planet increases your cancer risk.
We are indeed lucky to live in an era where medical discoveries are as accelerated as they are in the early 21st century. The core challenge that faces us, though, is how we live with the biological impact of our technological advancement: plastic in our food, chemical effluent from tech manufacturing in our air and water, and many other human-created biological threats.
Humans have internal challenges on the cancer front, too – just ask anyone with a genetically driven cancer risk, like BRCA1 or BRCA2. Until the last half-century or so, it was hard to know if we were staring down the barrel of a genetic howitzer until nature fired a round. Now it’s possible, via genomic testing, to know our risk of cancer and other illnesses long before they manifest … but what can we do with that knowledge on the prevention side, really? Again, we can ask people in the hereditary cancer community about that. Many women, and some men, in the BRCA community have taken proactive steps, such as prophylactic (preventive) bilateral mastectomies and oophorectomies (ovary removal), but how many people can freely make that choice and receive good, effective care?
As someone who self-identifies as a cancer warrior – I don’t care for the term “survivor,” since it suggests victimology to me – I think about this stuff all the time. I thought about it before I heard my name and the word “cancer” in a sentence, but not as hard, or as much, as I have since.
My thinking tends to revolve around how to make genomic testing available to everyone, not just those who can afford it. It runs toward community crowdsourcing of ideas on how to clean up after ourselves in ways that don’t mean resigning ourselves to eating plastic, or to becoming Luddites to avoid the side effects of technology. It embraces the idea that we can put our biology and technology more in sync – to be the Cro-Magnons with smartphones that we really are in the 21st century.
Healthcare works within human biology. Fully understanding human biology requires that we embrace that biome, and drill as far into it as possible to unleash our full human potential. That does not equate with patenting human genes (yes, Myriad Genetics, I’m looking at you) – it does equate with embracing data input from every possible source to learn how to defeat cancer.
This warrior asks you to grab what weapons you have at your disposal, and put them to use in the fight. We’re all in this together – the cure for cancer won’t be one thing, it will be many. It will come from many places. It must be available to all. And it will never end.
One way to get directly involved is to join the Count Me In project at the Broad Institute. As they say on their website, “Patient-partnered research is changing the future of cancer” – there are countless people across the country, and around the world, working to unlock new information about what triggers cancer cell mutation, and how to find its “off” switch.
Suit up, and join the fight. And if you know of projects working to make the war on cancer an artifact of history, share it on a #PatientChat. Let’s win this one.
Casey Quinlan covered her share of medical stories as a TV news field producer, and used healthcare as part of her observational comedy set as a standup comic. So when she got a breast cancer diagnosis five days before Christmas in 2007, she used her research, communication, and comedy skills to navigate treatment, and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy. In addition to her ongoing work as a journalist, she’s a popular speaker and thought leader on healthcare system transformation from the ground up.
https://powerfulpatients.org/pen/wp-content/uploads/A-Warrior’s-Perspective-on-Cancer.png600600Casey Quinlanhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngCasey Quinlan2019-02-20 17:09:562019-09-02 12:28:43A Warrior’s Perspective on Cancer
https://powerfulpatients.org/pen/wp-content/uploads/Untitled-design-24.png600600PEN Editorial Staffhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2019-02-19 20:41:412019-09-02 12:32:06Barby Ingle - What Advice Do You Have For Someone Who Is Newly Diagnosed?
Data from over 20,000 people with cancer found that one in ten patients were also affected by depression. Helping patients to deal with both the physical and psychological side effects of living with and recovering from cancer needs to be a necessary part of their treatment. Many studies have found that art therapy is a great way to help cancer patients deal with how they’re feeling, including reducing depressive symptoms and physical pain, while improving their outlook on the future and making them feel listened to.
Art therapy helps to reduce pain and depression
Many studies have looked into the positive effects art therapy has on mental health in cancer patients. 1,500 participants were involved in research by the National Institutes of Health and they found a very clear link. Art therapy helped to reduce anxiety, depression and physical pain in patients, and most patients also reported a general improvement in their quality of life. The research suggested that the emotional benefits lasted as long as the therapy, but a reduction in pain was seen in patients afterwards too. However, another study found that the improvements in anxiety and depression symptoms were long-term.
Art therapy without a professional
Unfortunately, not everyone gets the opportunity to work with a professional art therapist when they’re living with cancer or they wish to continue once they’re home. People can still benefit from the effects as it’s easy to do at home by yourself. Art therapy will vary depending on the individual’s preferences as some people prefer to make or listen to music, others like to draw, paint or write, and some like to make things, like sculptures. It really doesn’t matter which art medium is chosen as the person will still be expressing themselves. For example, drawing a person’s face can be therapeutic as it can help to think of a loved one, or it can be symbolic as the facial expressions can illustrate emotions that may be difficult to discuss.
Benefits during chemotherapy and radiation treatment
Art therapy has been found to be useful during chemotherapy in three main different ways. One study found that art therapy was a relaxing and creative outlet, patients felt they were listened to more and they had a way of expressing their emotions and the opportunity to find meaning in their life. Another study looked at how women receiving radiation treatment for breast cancer could benefit from art therapy. Their overall health improved, along with their quality of life, physical health and psychological health.They also had a better body image, coping with physical side effects from treatment improved and they felt hopeful about the future.
Art therapy has the potential to be a powerful tool for helping people to live and deal with cancer, both physically and psychologically. It’s worth discussing medical professionals involved in your treatment about the option of art therapy to see what they can offer, but you can always start your own creative projects at home to help you heal.
https://powerfulpatients.org/pen/wp-content/uploads/Using-Art-Therapy-To-Cope-With-Cancer.png600600PEN Editorial Staffhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2019-02-13 17:02:032019-09-02 12:32:05Using Art Therapy To Cope With Cancer
For those suffering from cancer or experiencing a loved suffer from cancer, sleepless nights are most likely all too familiar. For those who have lost a loved one to their battle with cancer, we grieve with you and sympathize for you. Know you are not alone in your pain when memories of the past creep into your thoughts each night as you go to bed.
Dealing with grief is a distressing experience that is accompanied by intense physical and emotional symptoms. Some of which include: low energy, anxiety, headaches, digestive issues, and most commonly, insomnia.
Insomnia is a difficulty of falling and staying asleep. Oftentimes, insomnia is a result of stress and anxiety. In grief, thoughts of loss consume one’s mind making it hard to relax and fall asleep. Oftentimes, individuals who are grieving wake up from dreaming about a deceased loved one as their brain processes the grief. The danger that comes to those who are grieving is when so much sleep is lost one becomes sleep deprived. Sleep deprivation only intensifies the symptoms of grieving, making day-to-day life even more challenging to manage.
So What Can One Do?
1. Consider therapy
It’s often anxious thoughts and the devastation of loss that keeps someone dealing with grief up at night. However, therapy can help you process your anxieties and identify harmful thoughts to replace with healthier ones. Sometimes verbally processing our fears is the best line of defense we have against the anxieties that haunt us at night.
2. Maintain a sleep schedule
As hard as it may be to fall asleep, it’s important to try and keep a consistent bedtime each and every night. Keeping a steady schedule will help you get a more regular amount of sleep on a nightly basis. Do you best to avoid naps during the day as they make it harder to fall asleep at night.
Try exercise as a natural remedy to sleep. Physical activity releases endorphins which help improve mood and physical well-being. Additionally, working out helps physically tire your body so you can sleep better at night.
4. Create a wind down routine
At the end of the day, our brains don’t magically power down. Rather, they need to be primed for sleep (especially if racing thoughts keep you up at night). Draw yourself a hot bath, stash the screens, dim the lights, and pick up a book. This will help quiet and relax your mind for sleep.
5. Create a space conducive for sleep
Although you may little control over you ability to physically fall asleep, you do have control over your sleeping environment which has the biggest impact on sleep quality.
Start with your mattress—the performance tool to getting your best sleep. Perhaps you shared your bed with your deceased loved one. Those painful memories could keep you up a night. If that’s the case, it may be helpful to get a new bed altogether. Maybe it’s simply making the space as conducive for sleep as possible. Make sure your room is rid of light pollution and noise disruption. Neutral tones are psychologically proven to help us relax, so consider softening the palette of your bedroom.
6. Finally, keep realistic expectations
Last but not least, keep realistic expectations. When dealing with grief, it can take a bit of time for sleep to become normal again. The important thing is that you make an effort to protect your sleep. It will give you the strength you need to faced the day.
Lisa is a freelance writer from North Carolina that recently lost a dear family friend to their battle with cancer. Since the passing of her friend, she faced many sleepless nights but has found peace in writing and educating on the impact grieving has on our day to day lives.
Cancer is mainly characterized by the non-stop division of cells and spread into the tissues around them. Human cells are intended to grow and divide to develop new cells, as required by the body. Damaged or old ones die and new cells replace them. But in cancer, cells behave abnormally, as damaged or old cells continue to thrive and new cells start to develop in areas where they aren’t meant to grow. The result of their non-stop growth is called tumor. There can be benign or malignant tumors, the latter of which would be the type to invade or spread into surrounding tissues.
The most common types of cancer are breast cancer, lung cancer, prostate cancer, rectal cancer, and colon cancer. Melanoma and non-Hodgkin lymphoma, as well as pancreatic, leukemia, and endometrial cancers are quite common, too.
Early detection is important in treating cancer. It helps if you are conscious of your body’s changes so you will know when to go see a doctor. The usual symptoms associated with cancer are long-lasting sore throat, change in bowel movement, difficulty swallowing, indigestion, lump in the breast or any other part of your body, unusual discharge or bleeding, change in mole or wart, and nagging cough.
Unfortunately, the fear that seems to come inherently when you mention the word “cancer” is made a few times worse by several misconceptions, several of which will be discussed here.
1. Eating sugar aggravates cancer.
This is not true. Research shows that while cancer cells love sugar (glucose) more than regular cells, no studies have supported that consuming sugar will worsen cancer, or not consuming it will improve one’s cancer diagnosis. But a sugar-rich diet will cause excess weight gain, which may lead to obesity, a risk factor for some types of cancer.
2. Cancer risk depends on family history.
Most types of cancer are not caused by genetics. Cancer Research UK said that most cancers are developed due to gene faults that become apparent during a person’s lifetime, probably due to aging or exposure to certain factors, such as sunlight or cigarette smoke. These genes, however, are not inherited and cannot be inherited by your children. There are a few cases where family history may show that some people have a faulty gene, which increases their risk of developing cancer, more than most people. If your family history shows that members were afflicted with specific types of cancer, early detection is important.
3. Tumor biopsy or cancer surgery can spread cancer throughout the body.
There is an extremely low risk that cancer will spread to normal parts of the body during surgery. Surgeons take precautionary steps to prevent this during a surgery or biopsy, such as using different surgical tools for the affected and unaffected areas.
4. Phones can cause cancer.
The National Cancer Institute said that the best research studies disprove this claim. Cancer cells develop due to genetic mutations. The low-frequency energy emitted by phones cannot damage genes.
5. Dental fillings have mercury that can escape and reach the organs, causing cancer and other diseases.
There is no proof to date that amalgam fillings, which can contain silver, copper, tin, and mercury, can have negative health effects. The only risk there is would be allergic reactions or some local side effects. If you’re worried about mercury, there are other alternatives to amalgam fillings.
6. Applying deodorants right after shaving can cause breast cancer.
According to a study published by the Journal of the National Cancer Institute in 2002 that focused on the link between antiperspirants or deodorants and breast cancer, the results did not show higher risk of cancer among the 1,606 women subjects. The only risk these products presented are in the form of skin irritation.
7. All cancers show symptoms.
Many types of cancer are asymptomatic. They do not show symptoms at all, which is why screening is a must-do. Screening for bowel, breast or cervical cancer can save your life. When you reach 50, you need to undergo bowel cancer screening every two years. Fifty to 74-year-old women also need to have a mammogram every two years for breast cancer screening. Women who are 18 to 70 and have been sexually active should undergo a Pap test every two years.
For instance, in the case of breast cancer, an ultrasound procedure may need to be done on women under 30 before mammography in order to test palpable breast lump. This procedure is quite simple as you will only be required to not wear jewelry and dress up in loose, comfortable clothing. During the procedure, you will be asked to undress from the waist up and to put on a gown, lie on the examination table, and have a warm water-based ultrasound gel to aid the transducer in making contact with the body and remove any air pockets between the skin and the transducer that can possibly block the sound waves from getting into your body. The sonographer will move the transducer back and forth over the tested area until the images are captured. It only takes around 30 minutes to complete a breast ultrasound.
Early diagnosis can improve your cancer survival. Go get screened now.
Mariam N. is a cleaning expert working with Sono Supplies. She has been interested in health and cleaning issues since she was young and wants to share her knowledge and experience with others who are not indifferent to cleanup. Mariam is deeply convinced that house cleaning is a critical part of hygiene. On a regular basis, she delivers new cleaning expert advice on how to treat products, tools, different items, which sometimes include medical instruments and equipment as well.
https://powerfulpatients.org/pen/wp-content/uploads/Facts-vs.-Myths.png600600Mariam N.https://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngMariam N.2019-02-11 17:13:562019-09-02 12:28:43The Most Common Cancer Misconceptions
Hello, I’m Beth Probert, and I am a patient advocated and ambassador with Patient Power.
I am also an MPN patient. Thanks for joining us for this Patient Empowerment Program in partnership with The Leukemia and Lymphoma Society. Today, our program is: Coping with the Emotional Side-Effects of AML. And we are joining our AML community.
We’re gonna focus on where we’re headed with treatment of Acute Myeloid Leukemia; what patients can look forward to in the coming year.
We will also answer questions that you can submit to AML at patientpower.info. And please note that we cannot provide specific medical advice over the internet. And it wouldn’t be fair to you. We always recommend that you seek care from your own doctor or AML specialist, and that’s how you will get the best treatment for you.
I’d like to start now and introduce our panel.And we’ll start off with Dr. Thomas LeBlanc. A medical oncologist, palliative care physician, and patient experience researcher from Duke Cancer Institute. Welcome, Dr. LeBlanc.
Hi, thanks for having me.
And I would like to introduce Michelle Rajotte. She is the Associate Director of the Leukemia Lymphoma Society’s Information Resources Center. Michelle has been with LLS for 13 years. Hi, Michelle.
Hi, good to be here.
Thank you. And last but not least, I’d like to introduce our patient advocate today, James Bond. And James has survived Multiple Myeloma for 27 years, and AML for the past 7 years. James and his wife, Kathleen, have shared their story in 29 states. And patients can contact him directly at his email, which is Jim.Bond48@gmail.com.
So, thank you for joining us today, Jim.
Happy to be here.
Great. Well, Dr. LeBlanc, I would like to start with you. Tell us a little bit about your background in AML and palliative care, please.
Sure. So, by training I’m an oncologist. But when I went through my cancer care training, I realized that oftentimes we fail to really attend to some of the issues that are most important to patients and families. And those might be things related to symptom burden, quality of life, emotional well-being, communication, understanding of prognosis.
And so, I ended up pursing additional training in palliative medicine where those types of issues really are the focus. And in doing so, got a sense that really adding specialist palliative care to cancer care and blood cancer care particularly, really could improve many aspects of the experience for patients and families.
And ultimately that is what my clinical practice and research have come to focus on. But in my clinical practice, I largely see patients with myeloid malignancies, including Acute Myeloid Leukemia and some related conditions.
That is so interesting and very unique because very often we see our doctors and we don’t get the whole palliative side of it. So, I can honestly and personally say that that is just a wonderful added bonus. Thank you.
And Michelle, can you tell us a little bit about your role at LLS, and really what the goal of the information resource center is?
Sure. So, I’m part of the Information Resource Center at Leukemia Lymphoma Society. Which, The Leukemia and Lymphoma Society’s main goal is to help find a cure for Leukemia, Lymphoma, Hodgkin’s disease, Myeloma, and improve the quality of life of all patients and their families.
And IRC is apart of that. So, basically, what we do is – it’s staffed by information specialists who are master level, either social workers, nurses, or other healthcare professionals who’ve been trained in blood cancer. And we can do anything from answer questions, provide disease information, help with clinical trial searches, find different support resources, refer to other organizations if we need to for other resources. But really, it’s anything that someone needs in the moment.
So, we’ll talk with them over the phone, through email, or through chat online, and we figure out what it is that they need based on talking to them, or whatever they provide to us. And then, provide them with the resources and support they need.
Wow. And that is just invaluable. And we definitely need to bring focus to the cancer patients and what your department could ultimately provide to them. Thank you.
So, Jim. You are a long-time survivor. How has your cancer diagnosis impacted you emotionally?
Well, it’s been like riding a roller coaster. My care-giver wife, Kathleen, Kathleen is sorry she can’t be joining us today. But the lowest point, of course, was getting diagnosed with a deadly incurable blood cancer. My first one, Multiple Myeloma. And then the second one, AML, many years later.
And so, what we tried our best to do is, to try to even out that roller coaster ride emotionally. And, I’ll give you an example, after 10 years of dealing with Myeloma, I was told, Jim, there’s nothing left that can help you, you need to go to a hospice. And that was obviously crushing.
And what we tried to do is pull each other up and say, “Look, we’ve been through tough spots before.” And we figured out that just rely on the doctors, rely on our own research ability, and they’ll be something coming up. And we were able to figure out, hey, there’s a clinical trial that was mentioned to us, and within a month of being told to go to a hospice, we were out of town in a clinical trial, and within two weeks, I was told, “You’re in remission.”
So, that was a tremendous high. And again, what we try to do when we get really good news is pull each other down and try not to be so excited, but we try to even things out. And that’s very difficult to execute, but for 27 years now, we’ve had a good deal of experience. There are a few other tings we do emotionally, we say, “Look, let’s do all we can, and then let’s not look back and second guess ourselves.”
And even to make it more normal, we cut off all cancer discussions with ourselves, ideas, or with a family member at 8:00 p.m. our time. We say, “You know what? Let’s just do what we’re gonna do at night, and let’s defer that to the morning.” That tends to let our emotions calm down and let us live more normal lives. At least in our minds.
It has not been easy. It’s been very difficult and emotionally at times, we’ve actually played a role of trying to lift up the medical team who, the AML diagnosis in particular, they explained to me, “Jim, you’re 64 years old,” When I got AML, that was seven years ago. They said, “Your chances of survival are not good. The only way you can live is through a fourth bone marrow transplant. And this one has to be not from your matching sister, but from an unrelated donor, if we can find one.”
So, they really encouraged me to consider just hanging up, but our approach, and this helps us emotionally is, no, we’re gonna treat this thing called cancer like a problem. We’re gonna put it in front of us, and we’re gonna deal with it as analytically, or unemotionally as we possibly can. And lo and behold, the doctors, as they’d come around in my, I don’t know, 10-week stay in the hospital, whatever it was, they would keep trying to say, “Jim, don’t get your hopes up. This might not work out.”
And it did work out, and we found ourselves much better off by, I do my favorite thing, and that is, I make myself exercise each and every day. And sometimes that exercise is not much, it’s walking with my IV pole around the floor section when doing a transplant.
Or it’s walking on my treadmill on snowy icy Ohio days like today. But that helps me emotionally because it gives me something that’s not cancer, it’s quiet time to think, and it really led to something that’s been just magical in terms of helping both of us emotionally.
When I had to leave town to do the clinical trial, my wife, Kathleen, got to thinking as a long-term volunteer of the American Cancer Society, she realized that there are not enough people in the country aware of these things that the ACS has called, “Hope Lodges.” So, she founded, launched, and leads, to this day – this was 13 years ago, she launched the first one. And I was not a cyclist, but I saw a link between the exercise that I think is so vital for me emotionally and physically, and this bike ride. So, I decided to buy a bike and trained. And I’ll be darned, I’ve ridden it every year four days, 328 miles from Cleveland to Cincinnati.
Wow, well that is really inspiring.
Thank you. And that helps me tremendously emotionally because that training and riding takes up a good three and a half, four months of my year, and I look forward to that, and the fundraising is tremendously exhilarating because I get to hear from people that I don’t hear from that often.
So, the key there is emotionally, I think, is just having a long-term plan, and not letting –
And Jim, I’m just gonna jump in really quickly, this is amazing information. So, hold that thought, we are going to jump on some of the thoughts you said, and I do want to say real quickly, I love the, “We” in that. We.
And we’ll click back onto that. So, I’m gonna hop over now to Dr. LeBlanc. And could you go through, with your vast experience, what are the key emotional side effects that you see your ALM patients facing day to day?
Yeah, this is such an important question, and it’s one that we don’t ask often enough, and we don’t talk about these issues very often, unfortunately. So, I’m really excited that we’re having this webinar, first of all. And I’ll tell you, it’s important to recognize as well, every patient, every person is different. So, there is not one quintessential AML experience. That’s really important to recognize.
But at the same time, when we have studied this issue and interviewed patients, and care givers, and family members, there certainly have been some common themes that have come through about people’s experiences. And one of the one that is, I think, particularly important to recognize is the sense of shock at this diagnosis. Now, acute leukemias, we call them acute because they tend to come on very quickly and suddenly.
And many of the patients we see will say things like, “I was fine three weeks ago. And now I can’t even walk up a flight of stairs.” And, “I’m so tired, I’m taking naps, this is not like me. I usually run marathons, and now I can only run a couple miles, something is going on.” And this really degenerates, for many, people over the course of day or a few weeks.
And sometimes it means they end up urgently in the hospital and are told, “You can’t leave. Something’s going on, we don’t really know what it is, but we’re concerned. You might have leukemia.” And if they’re not at a large medical center, they may get shipped off hours away from home to a place that’s not familiar where they don’t know anyone.
So, that shock and suddenness of the diagnosis makes everything else much more difficult, and it sometimes creates, even, social isolation related to where AML is treated. Where it tends to be treated more so at academic centers than it is in the community, although, certainly, some of these treatments are provided in the community.
But patients getting high-dose therapies do tend to come to large research centers. So, we’ve certainly seen that issue impact many patient’s experiences. The other one that comes up quite often, that really compounds the decision making and the emotional difficulties, is the issue of uncertainty. So, unlike many cancers, we really don’t know what to expect when a person is diagnosed with AML. And everyone asks, “Well, what stage is this?” and we don’t really have stages for this disease.
We, certainly, have ways that we can try to get a sense for what we might expect for the patient who’s sitting before us. And we do all kinds of fancy testing, and we talk at length about those issues, but at the same time, we really can’t say what’s going to happen to you, my patient sitting across from me who I’m trying to help guide through the process.
And there are actually a lot more risks associated with Leukemia treatments as you heard Jim talk about. A stem-cell transplant is a difficult and risky process, and sometimes that’s part of curing AML, or hoping to cure AML. But even high-dose chemotherapies in the hospital, some people actually do have really difficult complications, and even can die from those treatments, and yet, those are the treatments that usually are required to cure a person.
So, we have to have these difficult decisions made sometimes under a lot of distress emotionally, and amid the suddenness of this diagnosis, where we say, this is probably the best treatment for you, and it gives you a chance at cure, but it’s not a guarantee. And some people end up not making it out of the hospital. And usually what happens is, that’s just such difficult information. Many folks shut down and they say, “I don’t know, what should I do. Tell me what to do.”
Or they’ll turn to a family member or a friend who might or might not be around and available during that difficult time, especially if they’re in another city away from home. So, these are some of the things we’ll commonly see when patients are newly diagnosed with AML.
Wow. That is very intense. And there’s obvious emotional connections. And sometimes we hear someone’s diagnosed, and we completely forget that emotional side. So, I wanted to ask you, as well, you’ve been involved with research into the relationship between the emotional stress in AML patients and the overall prognosis. Could you please explain how the study was conducted, and what were some of the prevailing results of this study?
Sure. So, we did a longitudinal study of patients with AML who were being seen and treated on our in-patient service. So, these were mostly patients getting high-dose chemotherapy who would be stuck in the hospital for a month or even a bit more.
Like Jim described, getting these really intensive treatment regiments. And this was a study basically aimed at helping us better understand what people go through when they live that. And certainly, I’ve seen that in caring for many patients with AML, as have our nurses, and other members of the cancer care team, but actually, there has been very little formal, objective study of the patient experience with AML and related blood cancers.
So, what we did is we actually surveyed patients using validated instruments, and we assessed their symptoms, their quality of life, their overall distress levels, and in addition, we assed their understanding of their illness. Their understanding of what we call, “prognosis,” The idea of what the likely outcome of the treatment or the disease is going to be. And we did all of those – that whole battery of assessments every week when they were in the hospital, and then when they were out of the hospital, we did that every month.
And we followed patients for six or even upwards of 12 months, and different things happened. Some people went into remission and were cured, some people had relapses, some people went into transplant, some people had transient remissions, or even multiple relapses, got additional treatment. And by following patients over time, we were able to develop a profile of the patient experience with AML and look at different versions of that. Including, what people understand about their illness, and how that relates to their overall emotional well-being.
That is amazing. And was there something that just jumped out real quickly as far as the largest response rate you saw when people were taking care of that emotional part?
Well, the concerning thing that we found, which unfortunately is an issue across all of cancer care is that many people who are diagnosed with AML, especially when newly diagnosed, really don’t have a good understanding of the likely outcomes.
And it’s certainly not for lack of talking with patients and families about these issues, but it probably is a manifestation of the fact that this usually happened suddenly, as I mentioned, and it’s so emotionally overwhelming and difficult that it’s actually really difficult to contextualize the information that’s provided. And we, I think, end up overwhelming a lot of patients and families with so much information, that sometimes there’s a bit of a forest and trees problem, where maybe the most important factors don’t always get explained clearly or don’t come through well.
And we don’t always go back and check in about whether we did a good job of explaining things, which is unfortunately a shortcoming that most of us struggle with in taking care of patients. Communication of complex information is very difficult.
So, we found that many folks didn’t understand, for example, that the treatment they were receiving maybe wasn’t likely to yield a cure, which is true in some instances of AML. Or they might not have had a very good understand of the risks. So, one study, for example, suggests that AML patients may actually think the treatment is way more risky than it really is. And is that prompting some people to not receive intensive treatments that maybe could be the right choice for them and the most helpful for them. So, that was the one main interesting finding.
And then, related to that, unfortunately we also found that many patients who do come to more accurately understand the outcomes that are most likely with their particular situation, some of these are better than others, everyone’s different, the more accurately people understand their illness, there tends to me more emotional distress and sadness. Perhaps realizing that this is a very difficult disease to treat. And unfortunately, when we were doing this study, this was before we have eight new drugs approved in the last two years.
So, hopefully some of this has changed. But that’s why we’re having this webinar, and why we need to talk more about these issues.
Absolutely. So, now, Michelle. I definitely see that your role at LLS plays a huge part in this. And in your experience, how do you deal with this? What resources seem to be the most effective that you can provide patients in coping and the emotional side of this cancer diagnosis, and also, taking parts of what Dr. LeBlanc just said, I would love to hear from you now and what your role is.
Sure. I think it’s different for different people. We’ll talk to people who want to know everything, and we’ll talk to people who just say, “Just tell me the basics, I can’t get overwhelmed right now.” And it also depends on where they are in their cancer journey. Are they just diagnosed; are they relapsed? I think a big piece is being able to talk to other people who can relate to what they are going through.
So, other people who have been through this already and have gotten to the other side and feel like, okay, it can get better, there is hope. Here’s some things that might help. Because unless you’ve been through it yourself, I don’t think you can completely understand. You can empathize, you can be there for someone, but your friends and your family may not be able to give you that support that someone could that has been through it.
So, for example, at LLS we have the Patty Robinson First Connection Program, which can help over the phone to be able to talk with someone. And they may be across the country, but they may be very similar in background to you and be able to answer some questions that you have while you’re going through things.
There’s an LLS community where you can go on and talk with people. We have a lot of online support groups. There are online chats that are set up to be able to talk with, again, others, it could be across the country, they’re people you may have never had the opportunity to meet. Or if you’re not doing well, or you’re in the hospital, or your immune system’s compromised, you still can reach out and get that support.
And it’s not going to be something where you physically have to go somewhere, but there’s those options too. Or someone may not be ready to go sit in a group and talk about what they’re going through but can sit in front of a computer and just say, “All right, I really do need to talk to someone.”
Also getting professional support from a social worker, or a counsellor, or just anyone who can help you get through this because it is extremely stressful. And some people think, “Oh, I really don’t need that.” But it may be exactly what you need just to help you get through it.
Also, pulling in friends and family. And again, sometimes they may be more stressful because they don’t completely understand, and even though they’re trying to help sometimes it may have the opposite effect, but the intention is there, and it’s good to have them there, even if it’s just to drive you to a doctor’s appointment. And help you understand what the doctor’s talking about.
Wow, that is very impactful. It sounds like you really give the patients a complete tool kit as far as how to have these conversations and the unbelievable amount of resources that are available to them. So, that is invaluable. Thank you, Michelle. We’ll get back to you again.
And Jim, going back to you, did you reach out to your doctor in regards to this whole emotional turmoil, and you said earlier the, “Roller coaster.” Was that a talking point with your doctor, by the way, on how you’re feeling and how to cope? What direction did you take when you were first diagnosed, and was your doctor part of the conversation?
Well, we’ve been very blessed, very lucky. My first doctor who diagnosed me, he really helped me by answering this question that I asked.
And asking questions is a good way for me to relive stress and gain information, like the kind of information that Beth and Tom talked about.
When I was new to blood cancer, I said, “Doctor, now, if you were in my shoes, whom would you have treat your case?” And frankly he was shocked because he was at a leading cancer institute in my hometown here, in Cleveland Ohio, and he gave it real thought. And his compassionate answer blew me away. He said, “Jim, the professor who taught my blood cancer course at the medical school works in another hospital. Another leading cancer institute here in Cleveland. And if I were in your shoes, I would go to him.”
Now, what I did – and for 10 years, until he retired, that man helped us, my wife and I, emotionally and medically in more ways than I could ever describe.
An 8:00 phone call one night, and which we had never gotten from him, his name was Bob and of course, it’s a doctor, it’s an oncologist, I’ve got a deadly cancer, he’s calling at night. I’m thinking, “Oh, my god. The world’s coming down.” He really relieved our stress, he said, “Jim, those shoes you had on at your last appointment, may I ask you where you got those?”
So, like you said, Tom, each case is unique, and in our case, stress has been relived in some very unusual ways. I got in a car accident after my first of four stem-cell transplants, and my wife was having real problems with stress because now I was in remission and seemingly home free until it came back five years later, but she was really stressed out until I had a car accident where, not my fault, but somebody t-boned me and it really was a tough accident.
I was okay, but the car was wrecked. But when I called her to tell her that, she flipped out. And all this pent-up emotional stress she was going through came out, and it manifested in her yelling at me, how could I possibly have an accident after all we’ve been through? And the thing is, she caught herself, she listened to herself, and she realized, oh my gosh, what’s the point in getting yourself all in a knot over your incurable deadly cancer? You can get taken out by a car accident as any time. Things like that.
Absolutely. So, she really put it in perspective for you, didn’t she?
It really did. It really did. It just happened, it was coincidental that it happened, but it did. And so, we’ve used that.
Another thing that really helps us with stress is, and this is gonna blow some people away, but the longer we’ve survived with these two cancers, the more we’ve gotten asked to share our story around the country. And if fact, in two countries overseas.
And here’s the thing. We realized from the very first story telling we did in our home town, how much telling our story helped us emotionally. We looked at each other when the couple left our house and we realized, oh my gosh, just sharing our story and the roller coaster parts of it, not the technical parts, but just the emotional part, that really helped us. And so, we welcome other opportunities, and we encourage other survivors, whether it be short-term or long-term survivors, to consider the kind of things that the LLS has, and other organizations that get us out there, get people out there to share your story. It is very helpful for us. And that was a huge surprise to us.
Well, that is wonderful. And Michelle, I’d like to come back to you for a moment. Do you have resources that you can provide to caregivers and patients with AML, that if they do want to share their story, and is that part of what you do, as well?
Yes. That is part of the Patty Robinson First Connection program. What it is, it’s trained patient volunteers and family members who’ve been through this, who then want to be able to reach back out and help others who are going through it now. So, that’s one of the things they can do. They can volunteer at their chapters, and there’s always a way to get involved that way. There’s things on our website where people can share their story. There’s lots of different things. On the LLS community, there’s a way for them to be able to post what they’ve been through. There’s blogs that we do. There’s tons of different things. And as far as the care giver, Jim, you bring up a good point, they are going through a lot of stress, as well. And they need just as much support.
And we do have a lot of good caregiver resources now. We have a caregiver workbook that we can send out that has everything you could possibly need as a caregiver to know. And it’s divided into sections, so it’s not overwhelming, but it’s a way to have a roadmap to try to figure out, okay, what do I do? Because just like the person who’s been diagnosed, the care giver gets thrown into this and doesn’t know, what do we do; where do we go; what questions do we ask? I don’t even know where to start.
And a lot of times that’s the question we get at the IRC is, “I’m calling you, but I don’t even know why I’m calling you because I don’t even know what I’m supposed to know.” So, it’s really helping people try to figure out, what is that next step? And that’s really all you have to focus on. If you try to look at the big picture, it can be really overwhelming. But if you can get to the next step, that’s something that’s doable.
Wow, that’s wonderful to know you folks do provide those resources. Thank you.
So, Dr. LeBlanc, I’d like to shift over to managing fear, anxiety, depression. So, you mentioned a few times that being diagnosed can be so overwhelming, and we can’t ignore that this could lead to anxiety and depression. What sort of things do you recommend to your patients to allay these fears, and to put into place in their life in dealing with this? It’s obvious that for most people it is going to lead to the anxiety and depression.
Yeah, this is such an important question, and it’s a really difficult one to address. Most of the time, I do recommend that people talk about it. And sometimes that’s the most difficult thing to do even though it sounds obvious, but it’s often the elephant in the room.
So, many times, the doctors and other clinicians seeing patients with AML and other cancers are just so incredibly busy and also fixated on all of the medical details, and the labs, and the scans, and other treatments, complications, doses of chemo, all of these things that we need to be focused on, of course, that we forget about the person, and the way that they’re struggling with these issues.
And it’s not that we don’t care or that we’re bad people or anything, it’s just that’s never the number one priority when you have to get all of the details straight to make sure the person gets the right treatment. I try to ask, but sometimes we don’t do this. So, for example, if there are other clinicians listening and wondering how to do this, one thing that I do is to just say, “This is really difficult to go through. How are you holding up? What do you look to for strength?”
And I will ask the person there with them. Usually patients aren’t there alone, and typically the person who’s with them is the person who’s really helping them keep it all together. Whether it be a spouse, a family member, a caregiver, a friend.
And I usually turn to them and also ask them, “How are you holding up? What are you seeing? What is the patient not telling me?” You know? What are they going through that they’re – sometimes people will put on a brave face for the doctor and they won’t tell me how much they’re suffering at home, and I really need to know so that I can help.
So, really the best recommendation is open and honest communication. And the other great one is to seek out resources like the ones we just heard about. I sometimes will encourage patients to seek out a family therapist, a psychologist, somebody who they could see in the cancer center, a social worker, someone who they can sit down with for an even longer period of time and just talk about how difficult this experience is. And just talking about it sometimes is really some of the best medicine, honestly.
Wow. Yeah, I love the tie in to with making sure that the caregiver is doing okay, as well.
We often look at them as a pillar of strength and forget that they need those resources.
And one of the things that I personally feel is really really helpful, and I’ve heard from the AML community as well, is the mind, body, soul; exercising, meditation. And Michelle, I wanted to ask you, is that something that, when you talk about resources, that your department provides? Do you find that that’s a very often asked question, and/or it’s a topic that you like to recommend to patients?
We get a lot of questions about, what can I do? How can I help myself get healthier, or stay well? Or how can I help myself get stronger, or what can I do? And I think a lot of it is, you feel very powerless when you’re diagnosed, and you really don’t have any control. So, if there’s something you can do to feel like you’re taking part in your care and making decisions about some things you want to do, that’s great. We always say, “Check with your doctor to see what’s okay; what’s safe for you to do right now depending on how you’re doing.”
But we have a lot of resources on nutrition, we have a nutritionist that can do a consult, either over the phone or online through email. We have a lot of different resources, and webcasts, and podcasts, and videos, and we have a ton of resources.
It can be a little overwhelming just to go on to the website and try to figure out, okay, what do I look at? Where do I go? So, I would encourage them to call the IRC. We can walk you through, depending on what it is that you’re looking for in the moment, where to find it. How to bookmark it, so you can find it later.
But again, I think it’s really important to discus it with your doctor to see – obviously if you wanna go for a walk, and you’re okay to do it, that’s great. But if there’s a chance that your platelets are very low, and if something can happen, then you gotta check with them about that too. So, we’ll get an idea of what they can do, but we always send them back to the doctor, make sure whatever they decide to do, whether it’s supplements, again, check with your doctor because they can interact.
But anything they want to do to help themselves get stronger or take care of themselves is always a positive.
Wonderful. And, Jim, I’d like to ask you to stay on this topic for a minute. Could you give any advice about support groups?
Is that something that you found to be a great resource in dealing with this kind of anxiety and depression?
Yes, I think support groups are for people who want to go to a support group. Put yourself back 27 years ago when we first we introduced to blood cancer. There were not a lot of support groups available. And we started out with keeping it more to ourselves and our family, and then as we grew comfortable with living an managing the fear, the risk, the anxiety, our circle spread out. But it really was not until we got invited to share our story that our eyes were opened of the power of support groups. And we could see it happening.
One other thing that, Tom, I’d like to mention to you, one of the most effective way to manage fear for my wife and I was late one Sunday night lying in week number six, or something, in the last transplant for AML, and I’m on the ropes, I’m in tough shape. And the phone rings, and it was my myeloma doctor from Boston where we go twice a year, his name’s Paul Richardson, he’s an outstanding, compassionate doctor.
It was Paul, and Paul said, “Jim, I’ve just talked to your wife Kathleen at her home,” she had just left for the night. And he said, he said to her what he then said to me. He said, “Jim, I know you’re in a tough spot, but I want you to know, that we’ve got other patients here at Dana Farber, who have been through exactly what you’re going through, myeloma followed by AML, bad, bad prognosis.”
And he assured me that I could do it. And, Tom, what that doctor’s phone call meant to my wife and I could have been the difference between getting through this thing, and not getting through it. Giving up, and not giving up.
And we really believe it’s because our doctors have taken the time to help us build a relationship with them. Knowing how busy they are, and how many patients they have, we found the world of oncologists and the nurses and the others, very compassionate people. And it’s worth that time to build that relationship whether it’s your ongoing doctor, or one that you go out of town for a second opinion with, those relationships mean everything. And the doctors who are willing to take their time, when it’s not really on the clock and help their patients, they are doing tons and tons of good for the world that we live in.
So, we’ve got some other techniques, but those are the things that really stand out to me in terms of managing in this area.
That’s wonderful, Jim, and it circles right back to you, Dr. LeBlanc, when you introduced yourself and you told us that there is just more than coming to the doctor, and reading the chart, and giving the blood results. It’s definitely very impactful. And what you spoke about earlier about how you bring in the palliative care and the emotional care. And on that note, I know this is a little cross-over, but can certainly add to anxiety and depression on everything that we’ve talked about, Dr. LeBlanc, but do you encounter, through your care and conversations with clients, their anxiety over the financial part of care? Is that something that you hear often?
Absolutely. The idea of financial toxicity, sort of like other kinds of systemic toxicities you would have from chemotherapy, it’s just as real as a patient who gets neuropathy from their chemo. And in some cases, may be more crippling.
One of my colleagues here at Duke is a leading researcher in this area, and he’s taught me a lot about this, and unfortunately, I’ve seen it a lot in my clinic. And as we are fortunate to have a number of new therapies available for AML and other diseases like multiple myeloma, the unfortunate aspect of this issue is that many of them are pills, and may states do not have parity laws in place that require insurers to treat pills the same way as they do chemo therapy that you would get in an infusion suite.
North Carolina is unfortunately one of those, where I practice, where we still don’t have a law.
And that’s sometimes means I’m talking to a patient about an exciting new therapy, and then I find out that their monthly copay is going to be $3,000.00, and who can afford that? That’s just the copay amount for the patient just for one month of medication. This is, unfortunately, happening a lot. And thankfully, there are many resources that we can engage to help patients with these issues, but it is an increasing problem as medications are more sophisticated, they also have gotten much more expensive.
Yeah, and we hear this so often. And, of course, Michelle, I’m sure you’re hearing this, as well. And your department can direct people to the appropriate resources?
Yes. It’s something we hear every day, unfortunately. Like Dr. LeBlanc was saying, we’ve got all these great new treatments now, but so many of them are oral, and a lot of patients, if they’re on Medicaid/Medicare especially, their copay is extremely high.
We do have copay assistance through LLS, we will also refer people onto other organizations that have assistance if we know of them. So, anywhere we can get people to get the help. We also do a lot of advocacy on that end, and we’re in Washington a lot and we’re sharing a lot of patient stories, and we’re trying to get the word out there that we shouldn’t have these barricades to treatment. We do all this research, we find all these wonderful treatments, and then people can’t have access to them. And that shouldn’t be.
So, that’s one of the things, along with the research and the patient assistance we have, we also focus on the advocacy part, and making sure that the oral parity bills are passed in hopefully every state. And that things are little bit more on an even plane, so people can use these wonderful treatments that are coming out.
Wonderful. And Michelle just hit on treatments, so Dr. LeBlanc; I would like to now go back to you.
And could you tell us, in regard to treatments, advances in clinical trails for AML, what’s happening in research and should patients be hopeful?
Yeah, it’s really a very tremendous time in cancer care and in biomedicine in general. As I mentioned earlier, we had, if I remember correctly, eight new drugs approved for AML in the last two years. And we had been mostly using the same treatment for patients for the prior 40 years. The seven plus three induction regiment was developed in the ’60s or early ’70s, and mostly that’s the same regiment or related ones to it that we’ve been giving to people when we give them high-dose therapies for this disease.
Other things have improved during that time, as well, that are really improving outcomes, so we have much better supportive care medicines. We have growth factor injections that work better. We have better antibiotics. We have anti-fungal medicines that work a lot better.
So, when you add those developments, even to the old chemotherapy, that had improved outcomes prior to this spirt of approvals in the last two years, but now, especially, we really are in a new ear of how we treat AML. And now, we need to actually molecularly and genetically profile each individual patient’s leukemia, so that we can best know how to treat their disease because at this point, we have several testable targets that we might then prescribe a medication to address in an individual person’s case of AML. So, it’s getting more complicated, at yet at the same time, there are many more options, and it really is a time to be very hopeful about how things are going.
That sounds so encouraging. And Michelle, going back to you. How can you lead clients and their care givers to these clinical trials that are on the horizon?
And can you talk a little bit about what that process looks like?
Sure. If someone reaches out the IRC, we do have a group of nurses who do clinical trial searches specifically for blood cancers. And it’s not just, we’re gonna hand you a list as say, “Here, go talk to your doctor.” They will help through the process. So, they’ll really in-depth dig, and try to find trials that might be an option. Have you go back to your doctor, but then walk through it with you to help you get into that trial.
Because there’s so much research now, it’s wonderful, but it’s also really overwhelming if you try to do it by yourself. And a lot of them are more focused trials now, so you have to know what kind of mutations you have and that kind of thing. So, it’s a partnership where there’s a form that you would need to fill out for us to have that information, and then we help you walk through that process of, is there a trial that’s out there for you; is it something that’s appropriate for you, along with your doctor. And then, how do we help you make sure that you can get through the whole process.
Wonderful. What a fantastic resource. Thank you.
So, I would like to take a few questions that we’ve received, and, Jim, I’d like to hear your feedback on this one. And the viewer asked, “People keep asking me how I’m doing, and it just makes me worry more.” Do you have any advice, Jim, for people to tell those that love them and just want to help them that all these questions are causing anxiety, what would you suggest, Jim?
Yeah, a couple things that I’ve found useful. I explain to them I just got done with playing nine holes of golf, or I just got done exercising, and I’m quick turn it back and say, “How are you doing?” and try to get as much out of the other person, so that they understand that I’m comfortable in my skin, and I’m not stressing out or how things are going.
But it’s easy for people to understand that, hey, this guy’s got an incurable deadly blood cancer, or two, and we worry about him. So, I try to just loosen up, and turn it back on them, and hopefully they get more reassurance that, hey, the guy’s not stressing out, he’s okay. But you know, once you do all you can do, the rest of it is just fate, luck, whatever. So, that’s what we try to do.
I love that response. And people mean well, but putting the focus back on them is just fabulous. That’s really great, thank you, Jim.
Oh, you’re welcome.
And Dr. LeBlanc, we have a question from Shannon from Boston, and her questions is, “How can I manage the daily stress of like with AML? Are there proven strategies to cope with the stress?” So, we did talk about a few things earlier, but what advice would you give Shannon?
Yeah, I’m not aware of proven strategies specifically for AML, which is part of where we all struggle. Not knowing what to do and how to best support individual patients. And as I mentioned earlier, every individual is quite different. but I usually recommend meeting with a professional to talk about it. And some people are opposed to that and they don’t want to do that, but more people are at least open to the idea. And so, Shannon, if you’re somebody who’s open to that idea, I would actually encourage you to seek out a specialist in palliative medicine.
And many people misunderstand what that means. So, I want to just take a moment to explain why I would think that’d be helpful and what the evidence shows. So, clinicians who are trained in palliative medicine are basically experts on well-being.
They know how to address symptoms, they know how to help with quality of life maintenance, and they know how to help people cope with difficult diagnoses and serious illnesses like cancers. Regardless of the expected outcome. So, they can be helpful if we’re aiming at cure and we think there’s a really good chance of that, and they can be helpful in cases where we know that’s not gonna happen, and anywhere in between.
So, one of the misconceptions is that they can only be helpful when people are dying, but actually, what we found in a lot of research is that when you add a palliative care specialist to the cancer care team, even from the point of diagnosis, that patients feel better, and they do better, and even live longer. Several studies, now, have shown that in a recent medi-analysis that we publish, for example.
So, part of the mechanism by which palliative care specialists help patients feel better and live better is not only by addressing physical symptoms, but also at addressing these difficult emotional and existential kinds of issues.
Helping with coping. How do I get through the day; how do I live with the fear that this diagnosis instills in me; how do I enjoy life? Those kinds of questions are very common. And palliative care specialists are often very equipped at helping. Or even psychologists would be another great resource, where this is a person you’re going to see where the entire focus of the visit on those issues, so that they definitely don’t get pushed to the last 30 seconds of the visit when the doctor has their hand on the door knob and they’re trying to get out to the next patient.
Wow, and I love what you said that your study shows that people who do seek out the palliative care will live longer. And seeing a counsellor or psychologist too, both of those are just amazing suggestions. Thank you.
We have one last question from Doug from Boise, and, Michelle, I’m going to direct this question to you.
Doug says, he doesn’t know how to find a support group. So, where does he start? Could you give us some feedback?
Sure. He can start by calling us. We can try to find out if there’s one locally for him. There’s also access to the online chat, which meets in the evening and he can talk with people that way. There’s a lot of different options. So, there’s the traditional support groups that you go to, but there’s other ways of getting support, as well. So, that’s a good way to start. It can be very overwhelming to try to find one. The other thing you can do is if you’re being treated at a hospital, talk with the hospital social worker because they’re usually pretty knowledgeable about what supports are in the area. But I would say those would be the two good places to start.
That’s wonderful. And Michelle, can you give us your specific phone number and email where people can reach you and your department?
Sure. So, the number to the Information Resource Center, we’re available Monday through Friday, 9:00 a.m. to 9:00 p.m. is 1-800-955-4572. The other way to access us is through the website, which is LLS, short for Leukemia Lymphoma Society, much easier to type, .org. When you get on there, there’s a way to reach the information resource center either by email, by chat, or the phone number will be there, as well, if you need it. But that’s really the best way to reach us.
That’s wonderful. And we just got one last question, and we have enough time for it. And Jim, I’m wondering if you have some advice about this question. And it is, “My partner’s often struggling deeply with the diagnosis. I don’t know the right words to say to help him feel better.” Could you give some advice to this topic, Jim?
Yes. The weekend I was diagnosed, the very qualified oncologist rightly said in response to my question, “How long do you think I’ll live?” He said, “At most you’ll live three years.” And so, I struggled, my wife struggled, I was in my early 40’s, that weekend was hell. And here’s what got me out of my funk and got us back to problem solving and putting this thing on our agenda to do all we can. I looked back at my own life, here I am in my 40’s, two boys, I’ve been healthy most all my life. And I thought of, there was a real setback, medically I had, a bad injury playing sports when I was in high school, and to me as a high school kid, that was the end of my life. Sport was gone; a lot of recuperation.
And as I looked back on that with this cancer diagnosis, I said, “You know what, as tough as that was at the time, as devastating as that was, a lot of good things happened because of that setback.” Real things. Like it got me studying a lot more in college, I got a nice job as a result of it. Lots of good things happened. It caused me to overcome things, and I said to myself and my wife, “Hey, we’re gonna make this deadly cancer diagnosis the same thing.” And like all of us I think have been saying: every case is unique.
So, I don’t get bummed out when people give me their prognosis or whatever, or I read something that’s not good. My case is different than everybody else, and we can look at it that way. And in the end, this can happen to any of us. So, it got me off my back, it got us in there fighting, and that’s the way I look at it.
That is wonderful advice, and what I hear you saying is that, really, with your care partner, and your family, and I’ve heard this from Dr. LeBlanc and Michelle, as well, and, of course, Jim, that you’re a team. And finding that way to survive this as a team, so that’s great advice, Jim. Thank you.
So, I do want to thank the Patient Empowerment Network for this really impactful program today. I’d also like to thank The Leukemia and Lymphoma Society for partnering with us on this webinar. And I would like to thank our guests as we come to a close to this program. So, Dr. Thomas LeBlanc from the Duke caner institute, thank you so much for taking the time today and sharing the real benefits of the focus on the palliative care.
And Michelle Rajotte, from The Leukemia and Lymphoma Society. Your contribution has been wonderful, the resources that your department does provide. And Jim Bond, it’s just been so great hearing from you and your very long journey with AML, and what you’re dealing with, and how you have made the best life possible, and all of your dedication to advocacy. So, thank you so much for joining us today.
And if our viewers have missed anything or just want to re-watch the webinar, a replay will be available in the coming weeks. Thank you for joining us, I’m Beth Probert, and I look forward with meeting with the AML community again. Thank you.
We thank Celgene Corporation, Daiichi Sankyo, Genentech, Helsinn, and Novartis for their support.
https://powerfulpatients.org/pen/wp-content/uploads/Overcoming-Anxiety.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-02-05 18:24:022019-09-02 12:28:42Coping With the Emotional Side Effects of AML
Today is World Cancer Day, which is a day to unite people worldwide in the fight against cancer. World Cancer Day is an initiative of the Union for International Cancer Control (UICC).
2019 marks the launch of the 3-year ‘I Am and I Will’ campaign. ‘I Am and I Will’ is an empowering call-to-action urging for personal commitment and represents the power of individual action taken now to impact the future. You can follow along with all of today’s happenings with the official hashtags #WorldCancerDay and #IAmAndIWill. Head on over to worldcancerday.org to learn more about:
https://powerfulpatients.org/pen/wp-content/uploads/World-Cancer-Day.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-02-04 16:48:512019-09-02 12:32:05Spotlight On: World Cancer Day 2019
Scott is currently Head of Patient and Professional Engagement at Alder Biopharmaceuticals, a biotechnology company based in Bothell, WA, dedicated to transforming the migraine treatment paradigm through the discovery, development, and commercialization of novel therapeutic antibodies. Scott’s focus at Alder is on leading the development and execution of Alder’s overarching advocacy strategy including developing, implementing and leading both patient and professional advocacy engagement across the commercial portfolio, clinical development and drug discovery.
Before taking the position at Alder, Scott was Head of Advocacy at Juno Therapeutics where he led Juno’s efforts to build and develop the company’s partnerships with external stakeholders including; patient advocacy groups, medical and nursing professional organizations, health policy groups, and community partners. He was also a member of Juno’s commercial senior leadership team and helped build and leverage strong internal cross-functional partnerships to ensure patient and caregiver voices were heard and included throughout company decision-making processes.
Prior to Juno, Scott held leadership positions in areas of Advocacy, Education, and Patient Access at Food Allergy Research & Education (“FARE”), Synageva Biopharma, the Leukemia & Lymphoma Society (“LLS”), and Dendreon Corporation. At Synageva, his role as Vice-President of Global Patient Advocacy also included overseeing the development of the company’s government affairs and public policy functions with a focus on ensuring patient access and the inclusion of rare disease patients’ perspectives as part of policy in healthcare.
Before taking the position at Synageva, Scott was Senior Vice-President for Patient Access, Education, & Advocacy at The Leukemia & Lymphoma Society, working out of the Office of Public Policy in Washington, D.C. Scott’s responsibilities for the Society included building a stronger Mission presence for the Society across the country, building and overseeing a team of regional strategic leaders to focus on assessing patient needs and deploying resources to meet those needs, and serving as external Mission spokesperson for LLS in supporting campaign and development initiatives. Strategic resources under Scott’s oversight include patient outreach and engagement, HCP/provider relations, patient and professional education, and advocacy.
Prior to LLS, Scott was Associate Director for Advocacy and Health Policy for Dendreon Corporation, focusing on ensuring patient access to innovative anti-cancer therapies while helping strengthen the organizations he worked with in the cancer advocacy community. His work also included outreach and engagement with payers/insurers and healthcare providers and a special focus on underserved groups disproportionately impacted by prostate cancer, specifically African American and Veteran populations.
Scott’s background includes time as the founder and president of a 501(c)3 advocacy organization focused on health policy, particularly FDA/drug development timelines and processes, as well as a decade of experience consulting with global financial institutions during his time at Morningstar Associates, LLC. He holds a B.A. in political science from Middlebury College and an M.B.A. with a dual concentration in entrepreneurship and strategy from the University of Chicago.
A second opinion is crucial to prevent misdiagnosis or unnecessary procedures or surgeries. A study done by Mayo Clinic showed that as many as 88% of patients who get a second opinion go home with a new or refined diagnosis. That shows that only 12% of patients receive confirmation that their original diagnosis was complete and correct. Still, a lot of patients never get second opinions. So, we wanted to chat about this and see what the Empowered #patientchat community had to say, and these were the main takeaways:
The Top Tweets…
https://powerfulpatients.org/pen/wp-content/uploads/Finding-You-Voice-patientchat-Highlights.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-02-01 16:44:322019-09-02 12:32:05Finding Your Voice #patientchat Highlights