Why Information is One of the Best Medicines for Cancer

From Mia Bonhomme in Belgium – Mia’s website: MiaCLLBelgium flag

It all starts with the statement “ You have cancer”. The next second you have the impression your head is too small because thoughts are fighting to take their place in the front row. You are often not able to see, hear or understand the rest of what your physician is saying.

At home, you feel as if someone hit you with a sledgehammer, paralysed, not knowing what to do or how to react. In the back of your mind you still hope they’ve made a mistake, switched results.

The moment you realise that none of this is true and the diagnosis is for real, you start worrying about your dear ones. What will happen if you’re not around anymore to help them? You probably are even thinking of arranging your funeral.

You think of everyone except yourself and all this thinking and worrying is consuming so much energy that it leaves you with an empty battery.

When you reach your next appointment you feel drained of energy and happy that your doctor is taking care of your illness and upcoming treatment. You feel lucky you can leave it up to him because at that time there is no empty spot in your brain left to worry about treatment.

It is a fact that doctors know best but they’re also human, not almigthy. They try to take care of hundreds of patients and don’t have the time left to know everything there is to know about your disease. That’s why we patients have to inform ourselves, and seek answers to our questions, in order to understand what our doctor is telling us.

I had the luck to have the best specialist ever. He told me that in my case he had four different kinds of treatments available. I got the explanation of where each treatment would take me.

So he showed me four different kind of ways to fight my cancer and it was up to me to make the choice. The only thing I asked was: which treatment he would choose if he was in the same situation as me.

In our distress to cope with cancer we patients sometimes forget that there is a limit in what physicians can do.

We have to stand up for ourselves. No one is in a better possition to fight for your life than you yourself! Your physician can provide you the ammunition to deal with cancer, however you have to make sure that you understand the options.

That’s why we have to inform ourselves and become empowered. In this way, we can take control of our health.

We are responsible for our own life, not our doctor, nurse, caregiver or family… No, it’s our responsibility, our decision. We can decide to leave it up to our doctor and I’m sure he will do the best he can, or we can decide to become an active participant, get empowered and help as much as possible on our road to survival.

I’m convinced that if we lose that battle in the end, we can make peace with it because we did everything possible to survive. If you have done everything that’s in your power and it doesn’t work out, you don’t have to blame yourself or anyone else. It’s just life as it is written for you.

Spotlight on StupidCancer: mHealth Comes to Patient Support Groups

Spotlight

If you are a patient and haven’t yet researched or joined a patient support community, you should.

Communities exist for chronic cancer patients, chronic disease patients, rare disease patients and patients with almost any disease you can think of. Founders of these communities are often patients themselves and started the community with the thought of helping other patients through the medical and emotional maze that comes with the territory of living with a serious illness.

Websites such as Ben’s Friends or HealthUnlocked are networks of different patient communities relating to different diseases. PatientsLikeMe works more like a database with a member login and the ability to search for others with the same disease. It touts more that 250,000 members, and over 2,000 conditions represented.

Imerman Angels offers one-on-one cancer support. Patients are matched one to one with another patient, hopefully who lives nearby, is about the same age, with the same diagnosis and some of the same problems and issues.

And now, there is something more….. StupidCancer, an organization specializing in young adult cancer is developing a mobile app that will match cancer patients globaly, digitally and anonymously, via SMS, one to one, with another cancer patient.

StupidCancer states on its website,

“Stupid Cancer ….empowers those affected by young adult cancer through innovative and award-winning programs and services. We are the nation’s largest support community for this underserved population and serve as a bullhorn for the young adult cancer movement.” 

Adolescents and young adults account for 72,000 new cancer diagnoses each year. What better than a cool mobile app to appeal to the younger generations? StupidCancer’s Instapeer is an app that works much like an online dating service. You can screen and filter and choose, all anonymously, to be matched to another cancer patient in order to converse, support and help one another through living with cancer. See the Instapeer images below to get a feel for how the app works:

Instapeer screen shots

Instapeer screenshot2

Instapeer screenshot 3

StupidCancer feels that current cancer peer matching services need a 21st century makeover – a more relevant process that is in sync with today’s empowered healthcare consumer.

The Instapeer campaign on Indiegogo claims that Instapeer is for any cancer patient, but it will most likely appeal to the younger and more tech-savvy candidates.

The Indiegogo page lists the medical advisors involved in the development process and also offers numerous “perks” for contributions of increasing amounts.

I spoke with Matthew Zachary at Stupid Cancer and asked him how he came up with the idea.

“No one else was doing it. It’s a revolutionary idea that young cancer patients are really excited about. At the recent OMG Cancer Summit for young adults this year, when I assured the audience that we would have an app by Labor Day, Instapeer got a standing ovation.”

StupidCancer anticipates 500,000 users adopting Instapeer by 2016.

Resources:

http://www.csrwire.com/press_releases/36244-Stupid-Cancer-s-Instapeer-Mobile-Health-App-Set-to-Revolutionize-Cancer-Support

 

Spotlight on CareBrigade: How a CareBrigade Can Help You

Spotlight

CareBrigade was created by Florence Harvey for herself, when diagnosed 10 years ago, in a new city far from family. A CareBrigade is a Patient Advocacy Posse of friends, family, neighbors, church members and acquaintances that can be lined up right after the diagnosis, even before the Patient  knows what he/she might be needing, and that be called on at any stage of the medical journey.

The CareBrigade 5 Step system ©  empowers a Patient supported by at least 2 friends or family members chosen by the Patient. To get a CareBrigade started, identify the possible specific needs  (a “Wish List” of tasks),  timelines, and  the talent available in advance, and have a ‘worker bee” team in place “just in case” and  “just in time.”   The Patient chooses  her/his Core Team:  Co-Leader, Scribe, Medical Researcher, Communicator, and communicates directly with them. The Co-Leader (supported by a Scheduler) buffers the Patient  dealing with too many people during a time period that can be overwhelming.

A CareBrigade

  • Empowers Patients to be a full partner with their medical providers,  supported by friends and families with some medical savvy, serving as volunteer Patient Advocates,  Patient Navigators, Scribes,  and medical researchers/consultants.
  • Empowers  Patient’s families,  friends, and  acquaintances to know  in advance which “tasks” might be most challenging for the Patient at each stage, to  pick in advance the ones they could joyfully and easily do, and volunteer before the Patient has to ask.
  • Encourages Patients to use self-care, alternative therapies, relaxation techniques, a compassionate listener,  and self-designed spiritual practices to manage their own fear and anxiety through each stage of the healing journey.
  • Enrolls Friends and Family (even those at a distance) to play valuable roles the Patient might not think of  (like Co-Leader, Spiritual Advocate, Scheduler, Communicator)  using Web based tools, the telephone, or Skype.
  • Solicits in advance (on behalf of the Patient)  willing to offer day-to-day practical support volunteers for Tasks customized to  match the volunteers gifts and the projected at-home recovery Wish List needs generated by the Patient.

The FREE CareBrigade Web site   www.CareBrigade.com  can be used by folks who want to help,  to learn and use the Roles,   no matter the distance. The Web site outlines the 5 steps, suggests 6 Core Support  Roles, offers forms and WEB sites for each Role, and provides a Resources page suggesting additional Medical, Spiritual, Practical tools to facilitate execution of a CareBrigade.

Watch the following video as a CareBrigade member talks about her experience:

From Caregiver to Patient Advocate: My Journey

I was in my first year of pre-medical studies when my husband, Larry, was diagnosed with Congestive Heart Failure (CHF). When you have a chronic disease, it’s not the disease that derails your life; it’s the associated comorbidities. Every day I went to classes never knowing if today we would end up in the ER…or worse. Doctor appointments were scheduled around classes, projects, and exams until we reached the point where classes, projects and exams had to be scheduled around hospitalizations. My formal education was taking a back seat to the hands on education I was receiving at the hands of my husband’s doctors. I learned to recite a pharmacopeia of drugs with their associated q’s and t’s, BID’s and mg’s. I learned the complicated names and associations between Larry’s comorbidities and, on more than one occasion, identified the correct differential diagnosis despite the provider’s insistence that perhaps I should go wait in chairs.

I learned to participate in Larry’s grand rounds and I developed an unerring instinct for knowing which RN’s and CNA’s would work best with him. In the meantime, I studied for my MCATS; to save time, I took up residence in Larry’s hospital room as he recovered from his 10th, 11th, and 12th MIs and his subsequent 12th and 13th stents. I took the MCATS the same day I brought Larry back home. Ten weeks later, I received the test results and knew that I had a good chance of getting into medical school. Little did I know how much my life was going to change in the very near future.

CHF and diabetes are close bedfellows and Larry’s case was no exception. A blister on his foot, discovered during one of my routine foot checks, quickly turned into an open wound that resisted all forms of interventions. It degenerated into wet gangrene and in January, a below the knee amputation (BKA) was agreed upon despite his ever decreasing odds of recovery due to his failing heart. I had quietly graduated with my undergrad degree the previous month and was recovering from an open biopsy on my tibia. My daily trips to the hospital to be at Larry’s bedside were a bit more adventuresome with crutches, but it allowed me to see the good in people as they did their best to help us in any way they could. Larry’s recovery was an arduous one with a week-long excursion through ICU for sepsis that left him in a permanent sun-downer state of dementia—not a terrible place if you thought the ‘70’s was a great decade to re-live.

Larry died six months later. During those six months he learned to walk again with use of a walker and celebrated his final birthday surrounded by more than 100 people whose lives he had touched in both simple and profound ways. Ten days after he died, I received confirmation that I had been accepted into medical school. Orientation would commence in 3 weeks. I briefly considered what it would be like to accept but I had lost the strength and desire to pursue clinical medicine. Instead, as I found my way through the fog of bereavement, I discovered that Larry had left me with an unintended gift: experience as an advocate and the empathy for those who need one. Armed with this shift in paradigms, I enrolled in a Master’s program of Health Advocacy. I had discovered my true calling and passion for life.

Living Well with Cancer

I would bet that most, if not all cancer patients understand how important it is to maintain a healthy lifestyle while living with the disease. However, I feel that living well is so important for everyone that I wanted to touch on some key points and point out some cool resources that can help maintain an active and healthy life.

MD Anderson points out why a healthy lifestyle is important for cancer survivors:

“A healthy lifestyle is important after cancer treatment. Good nutrition and regular exercise can:

  • Reduce your risk of cancer (new or recurrence)
  • Help relieve long-term side effects of treatment
  • Lessen feelings of sadness and improve mood
  • Improve your heart and lung health and lower the risk of heart disease
  • Help lose or maintain weight
  • Increase energy, endurance, strength and flexibility
  • Lessen the effects of stress, anxiety and fatigue
  • Help maintain normal bowel function”

MD Anderson goes on to offer tips on healthy eating such as avoiding red meat, limiting sugar, salt, processed foods and alcohol intake (the resveratrol in wine may not be the wonder ingredient it was thought to be), and eating lots of plant-based foods such as fruits and vegetables.

Besides eating well, be sure to practice regular exercise, including aerobic activity and muscle strengthening activity.

Some people have no problem following this regimen. Others find it difficult to motivate themselves. Below are some tips and hints that may be useful:

Healthy Eating

It’s Spring! Visit a Farmers Market in your area. This time of year, these markets are so colorful, brimming with fresh fruits and vegetables.

Local farmers market in Charlottesville, Virginia

Local farmers market in Charlottesville, Virginivegetables. And many local newspapers or magazines offer great recipes for local crops. Plan on eating just vegetables for lunch a couple of days a week; you really may enjoy it!

Join a local food co-op. These are more and more popular. Local farmers will deliver seasonal crops to a central location or even deliver them to your home. Plan your meals around the crops and look for recipes including them, rather than choosing a recipe and then purchasing the ingredients. With online search engines, finding recipes takes seconds – include the term healthy in your search.

Join a healthy eating group, or healthy cooking group. Start an herb garden to make your vegetables all the more tasty. Experiment with spices and ethnic recipes. Grind and toast your own spices.

Join Pinterest and check out all the tasty, healthy recipes there. Create your own board and pin some of your favorites. Cleveland Clinic has a wonderful Facebook page with healthy eating tips and healthy lifestyle tips. “Like” their page and get their updates daily.

Currently, UC Davis Comprehensive Cancer Center researchers are doing a clinical trial on how diet affects cancer patients. In the Sacramento Bee,  Dr Edwin Alvarez, a gynecological cancer specialist there is quoted as saying,

“Whole lifestyle changes including diet may have something to do with patient recovery. We’re participating in a clinical trial right now addressing this question. If they overhaul their diet, do they do better? Right now, we don’t know the answer.”

There is also a cookbook out entitled, The Ultimate Anti-Cancer Cookbook by Pamela Braun. I have not read it so can not offer a review but in the same article as above, Dr Edwin Alvarez comments about it in regards to diet, nutrition and cancer,

“… research is certainly indicating that good diet has a strong influence on (reducing) cancer risk,” he added. “That’s part of the message (in Braun’s book) that I can underline.”

Diet and exercise are part of the recovery process for every patient, Alvarez noted. “It’s easy enough to say, ‘Eat better.’ But the patient then asks, ‘How?’ That can be tough to really address while also treating the cancer adequately.”

Staying Active

Staying active is key to keeping healthy and aging gracefully. Aerobic exercise, muscle strengthening, balance and flexibility exercises will all keep your body healthy and fit. Yoga is wonderful for flexibility, balance and strength. Abdominal exercises will help strengthen your back to guard against lower back pain, one of the most common medical conditions. Brisk walking is great to build aerobic strength.

But exercise takes motivation and this is difficult for many. How to get motivated? Here are some ideas:

Exercise with a friend. If you have a partner, it’s easier to stay motivated and more difficult to back out.

I am a puppy raiser for Service Dogs of Virginia. I am here with my current "student", Bolo

I am a puppy raiser for Service Dogs of Virginia. I am here with my current “student”, Bolo

If you have a dog, walk with your dog; they are great walking companions. If you don’t have a dog, consider volunteering at a local SPCA and walk the dogs there. Or volunteer at a local service dog organization and take these wonderful animals on outings to the local supermarkets and shopping malls. You may be surprised at all the people you meet while walking dogs. It is a great way to get out, stay active and meet new people.

Use a gadget! Get a Fitbit or a BodyMediaFit. These devices track everything from calorie intake to steps taken, sleep patterns and periods of exercise then sort and analyse the data to give you organized charts on your mobile phone. Track your steps on these devices or just get a simple pedometer and track steps on that. See how many steps you take a day and try to improve on that number.

Watch some yoga YouTube videos. Find out what kind of yoga is good for you and start stretching. Start slow. Join a local healthclub or yoga studio for personalized help.

The key to getting and staying motivated to exercise is to find the activity that is best for YOU. But do something! You owe it to your body and to your mind.

Healthy living, including healthy eating and staying active is important for everyone. But for anyone who has a chronic disease, it is critical. Please, Empower yourself and take care of yourself and your health!

 

Patients Helping Patients – Improving Health Literacy and Cancer Care

ASCO recently published their paper on  State of Cancer Care in America 2014. In this paper, authors outline concerns and possible courses of action. The report addresses cancer costs, increasing treatment options, growing number of cancer survivors, disparities of care and the challenges of meeting these needs and concerns. (ASCO created a great infographic on Cancer Care in the US which you will find at the end of this post)

ASCO predicts that by 2030, new cancer cases in the US will rise by 45%. By 2022, there will be almost 18 million cancer survivors, about a 35% increase from today. But ASCO is also predicting a national shortage of oncology specialists by 2025. New treatment options will increase the number of cancer survivors, which is a good thing, but the shortage of specialists will result in a strain on the existing providers and a possible decrease in quality or continuum of care for some patients. Disparities of care for certain ethnic groups coupled with rising costs of medications and treatment could further result in problems with quality or access to care. Besides shortage of oncologists and disparities of care, uneven geographic distribution of physicians leave those in rural areas wanting. ASCO cites an analysis of demographics showing that nearly 90% of oncologists practice in urban areas and that more than 70% of US counties analyzed had no medical oncologist at all.

Patient studying information at City of Hope patient forum

Patient studying information at City of Hope patient forum

As a direct result of the above challenges, cancer patients (and their families and caregivers) will most likely have to become more responsible for their care. It is of course most important to have the best medical team possible, but it is also important for patients to take care of themselves in between visits. Patients will need to monitor themselves better, and lead healthier, better lives. Those taking the oral cancer medications will need to be extremely compliant and take measures to remember to take their medication at correct times and not forget doses. They will need to eat right and keep fit and do all they can to maintain a healthy lifestyle. They should also avail themselves of all information about their illness in order to keep up with the latest news and research.

Researching online, joining patient communities, conversing with other patients, using mHealth, social media or fitness trackers are all ways that patients can educate themselves and improve their knowledge during their journey.

Online research can greatly improve a patient’s knowledge about the course of their disease, possible treatment options, side effects from medication, clinical trials and much more. And many patients are fully aware of the wealth of information, embrace it and check online daily for updates and news. (For a good list of online resources, please look at our “Resources” page). However, for some patients, the diagnosis of cancer takes its toll and the patient is overwhelmed emotionally and needs help from family or caregivers. And for others, the internet is a mystery that they do not want to approach alone.

Older patients especially need help with gaining health literacy. They can be helped by a spouse or other family member if that is possible. If they live alone, there are some other options. Senior centers often offer courses in internet research and community colleges offer such courses as well. As soon as a patient is able to go online, email and do a simple search, the possibilities open up. Numerous online sites cater to the older population. Health in Aging, AARP, NIH Senior Health are some commonly known sites. But although these sites are great and do have a lot of information centered around seniors and health, I did not see any very easy visible step-by-step guide to internet searching. NIH Senior Health did have a “Trainer Toolkit” that explains how to help others research online, but there was no such toolkit for novices.

Patient discussion at City of Hope patient forum

Patient discussion at City of Hope patient forum

Patient communities are extremely helpful in supporting and educating cancer patients. Patients have said to me time and time again that there is nothing like talking to someone who has walked in your shoes. There are many online patient communities (again, check our resources page). There are also some live Patient Forum events that patients can attend to listen to expert physicians and talk directly face-to-face with other patients. These events are extremely well-received by patients, families and caregivers alike. For a testimonial about such an event by a patient attendee, please click here.

Another option is to contact Imerman Angels and get matched to a cancer patient that has issues and needs similar to your own. Jonny Imerman is a testicular cancer survivor who started Imerman Angels with the belief that no one should have to fight cancer alone. Imerman Angels partners anyone seeking cancer support with a cancer survivor “mentor”. These partners can meet face-to-face, on Skype or email – whatever method is most practical for them.

Online research is great and patient communities are great also, but there is a lot to be said about meeting and seeing someone face-to-face. As I mentioned above, the live, cancer-specific patient forums are extremely well-received; some patients had never met a “fellow” patient before and almost can’t stop talking to them once they do.

In the near future, we are going to initiate some “virtual” cancer-specific patient meetings on a video communications channel such as Skype or Zoom. We will invite patients to join us and talk virtually to other patients. I think this could work for older patients as well who are not so versed in searching online. If they have someone to help them set up a computer and webcam, then all they would have to do is join in the conversation…or just listen. And perhaps this could open up future meetings for them with other patients. Technology is improving and becoming so user-friendly. All Zoom requires in order to join a Zoom meeting is that you answer the email and click on “join meeting”.

One great advantage of virtual meetings is that patients can join in regardless of where they live or what their mobility status is. Patients in remote rural areas can join in the conversation as well as patients who do not have easy access to transportation or those that are house-bound.

With the number of cancer survivors growing and the number of physician specialists shrinking, patients need to do all they can to help themselves and to help one another. Patients helping patients will increase health literacy,  patient empowerment and improve cancer care.


Resources:

http://www.aging.com/health-and-wellbeing/

http://jama.jamanetwork.com/article.aspx?articleid=1866090

http://www.asco.org/practice-research/cancer-care-america