Mobile and Web Apps for Care Management: A Guide

Source

Have you noticed that there seem to be technology tools for nearly everything except for what you need most - managing your health? 

From prescription reminders to sharing your records to links to online support groups, we've curated a list of online tools (either available on your computer or your mobile phone) that can help guide you. As a note, this post is meant to introduce a variety of free applications available online and/or on your mobile phone, and is not an endorsement or recommendation.

Information Management and Organization

• Cancer.net’s free app provides a guide on 120 cancer types and provides a place to save information about prescription medications, a symptom tracker and an interactive tool to keep track of questions to ask your healthcare provider and record their voice answers (note: Spanish-version available).
• Pocket Cancer Care Guide helps you ask your healthcare provider and team the right questions.

iChemoDiary is available through the iTunes Store (free)

• iChemo Diary (iOS only; available in French) helps you keep track of symptoms, treatments and notes to discuss with your healthcare provider.
• Jack Imaging is a free tool that allows you to manage your medical imaging records online. View, upload and/or share X-rays, CT and MRI scans with your family or care team directly and never lose your imaging records again.

• MyMedical helps you keep your records organized, track and chart test results, and keep critical information on hand all the time.   
• Chemo Brain Doc Notes provides yet another free tool to help you remember what you need to ask your healthcare provider, and save time in recording and managing your notes.
• Better offers a personalized health assistant to help you navigate the complicated healthcare system. They have partnered with Mayo Clinic to provide easy access to world-class care. Their free app can be accessed through the iTunes store, here. 
• intake.me was founded by Darla Brown, a regular volunteer at the Cancer Support Community Benjamin Center, in order to streamline the patient intake experience. Intake.me will go live early 2015 and you can sign up to be notified, here. 

Find Clinical Trials

• Cure Launcher provides a free, personalized service to match you with an appropriate clinical trial. Visit their website or call 1-800-488-6632 to speak with a representative.
• Clinical Trial Seeker App: Get cancer trial information quickly and conveniently sourced from the NIH database. Search by location, disease type, treatment, phase of trial, trial sponsor, age, gender and/or keyword.

• Cleveland Clinic Cancer Trials provides a real-time database directly on your mobile phone so you can stay up to date on Cleveland Clinic's 130+ clinical trials for cancer patients.
• NCI Clinical Trials
• ClinicalTrials.gov 

Pill Reminder / Drug Information and Prices

• Rxmind Me is a reminder for your medications, vitamins and supplements.
• Pocket Pharm provides drug information, medication organizer and interaction checker.
• Epocrates is a clinical reference guide available in your pocket.

• GoodRX helps you save money on prescription drugs by providing price comparisons and coupons to local pharmacies. Find and print their pharmacy coupons so you don’t end up paying more than you need to.
• iPharmacy Drug Guide & Pill ID helps you keep track of your medication regiment by combining a pharmacy discount card with a medication educational resource. The app helps identify prescription drugs and provides information about dosage, warnings and contraindications. 

• Med Helper reminds you to take medication, keep track of your appointments and more 

Managing Side Effects and Rest and Relaxation

• My PearlPoint Cancer Side Effects Helper offers nutritional guidance and practical tips to help survivors maintain their strength and just feel better.
• Calm - meditate, sleep, and relax. 

Support and Online Networking

• CaringBridge
• Treatment Diaries provides an outlet for anonymous, shared healing.

• IHadCancer.com: join tens of thousands of survivors and supporters who understand what you are going through. Search by location, cancer type, age and gender.

Breast Cancer - specific: 

• Breast Cancer Diagnosis Guide provides answers to your diagnosis questions, articles about your particular cancer type and guides you through unfamiliar medical terminology. The app also claims to help you understand your diagnostic reports (free for iOS).
• Cancer Coach has information on breast cancer and treatment, with a journal function allowing type and voice input (free for iOS and Android);
• iEat for Life: Breast Cancer helps you maintain a healthy diet while undergoing breast cancer treatment. The app contains a database with nutritional values and cooking tips for countless food items. It also includes research studies that cite certain foods as being beneficial for the prevention or healing of breast cancer (free for iOS).

• Breast Cancer: Beyond the Shock is a support-group app for diagnosed patients as well as their caretakers. The app contains information about breast cancer and connects you with others who have gone or are going through the same thing you are (free for iOS).

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Thank you for reading and please share your favorite online tools with us by commenting in the space below or by sending an e-mail to info@cancersupportcommunitybenjmaincenter.org

What Not to Say to a Cancer Patient at the Holidays

CSC is here to help! Do you have a family member, friend, or coworker who has cancer and you are wondering what to say? Stop by CSC to pick up a copy of our "How to Be a Good Friend" pamphlet - it is small enough to fit in your pocket - and is a great resource on the do's and don'ts of what to say!

Did you read this recent CBSNEWS article on this subject? Check it out below.

11/24/14 by Jessica Firger, CBSNEWS

For the estimated 1.6 million Americans diagnosed with cancer each year, making it to the holidays can feel like a personal triumph and a huge blessing. However, for many cancer patients the big family dinners and holiday parties that are part of the festive season can come with an element of dread. Nearly everyone who has gone through treatment for a life-threatening illness will tell you that when surrounded by friends and family -- both distant and close relatives -- there's likely to be at least one guest with "foot-in-mouth disease."

Dana Manciagli, a stage 4 breast cancer survivor, recalled how she threw a holiday party in 2002 to celebrate coming through the end of her treatment that year. 

"A woman walked up to me and said, 'How can you be so happy? You have cancer,'" Manciagli told CBS News. "I was surprised she didn't wear black to the party."

Manciagli recently lost her identical twin sister to breast cancer, and over the years the two kept a running list of things you should never say to a cancer patient, sort of like the Letterman Top 10, she said. Read the rest of this article.

Why This Yoga Teacher Of 15 Years Takes Beginner Yoga Classes

This guest post by Emily Burg originally appeared on Yogi Living.

I have been practicing yoga for 15 years, and teaching for five, and when I attend a yoga class for my personal practice, it is a Level 1 or restorative or gentle yoga class.

For most of my time practicing yoga, I thought that the purpose of the practice was to ascend.  To develop the ability to perform ever more complex asana. To practice more often.  To get sweatier on the mat.  To be able to hold a pose longer.

I had it all wrong.

All of those years of yoga practice experience didn’t make me a more advanced yogi, because in yoga, being able to stay connected to our beginner’s mind is what actually demonstrates our mastery.  One of the greatest challenges in yoga is to go as deep and practice with as much focus, commitment and intent in a basic yoga practice, as you would in a Level 3 all inversions and arm balances class.

This was nearly impossible for me once I became a yoga teacher, though of course when I reflect back on my teacher training, the focus was never was never to turn us into the most flexible yoginis but rather to make us the most grounded, centered and wise guides for our students.  Yet I felt that as a teacher I had to demonstrate an elevated practice, attend upper-level classes and never require an adjustment, because, as a teacher, I should have a perfect practice.  This was in spite of being a teacher who instructed my students that there is no such thing as a perfect practice, and that the core of the practice is learning to come to acceptance with whatever version of ourselves shows up on the mat each day.

Yoga, which had been a central part of my life for so many years, was no longer a source of refuge, inspiration, expression, creativity and release.  Instead going to the mat as a teacher felt like work: I was either unable to shut off teacher mode or, I was so busy watching how the teacher taught the class, looking for ideas and cues that could feed my own work as a teacher, I lost the ability to stay present in the moment as a student, I lost the unifying connection between my breath, body, and mind that yoga enables — the reason I came to and stayed on the mat for so many years.  I lost my student’s mind, my beginner’s mind.

A combination of missing my yoga practice, and missing the opportunity to be a student, led me to reconsider my yoga practice altogether and to return to yoga as if I were a new student.  Now only attending level 1, gentle or restorative classes, I approach each class as though it’s my first time on the mat, and in a way, it is: I am traveling back in time, reconnecting with the beginner yogini I was once, and in many ways I still am, now in the form of an established yogini and teacher: a woman who comes to the mat stressed and anxious, overworked and under slept, seeking solace, grounding, insight and connection to an ancient lineage of wisdom and wellness.

About Emily Lauren BurgEmily (aka Guru Em) is a former investment banker and strategic analyst turned yoga and meditation teacher. She uses mindfulness and wellness practices to address stress, anxiety, and change and help her students experience wholeness. To learn more or connect with Emily visit her website, Guru Em.

Training Dogs to Sniff Out Cancer

Check out this article from The New York Times' Well Blog by Joshua A. Krisch

PHILADELPHIA — McBaine, a bouncy black and white springer spaniel, perks up and begins his hunt at the Penn Vet Working Dog Center. His nose skims 12 tiny arms that protrude from the edges of a table-size wheel, each holding samples of blood plasma, only one of which is spiked with a drop of cancerous tissue.

The dog makes one focused revolution around the wheel before halting, steely-eyed and confident, in front of sample No. 11. A trainer tosses him his reward, a tennis ball, which he giddily chases around the room, sliding across the floor and bumping into walls like a clumsy puppy.

McBaine is one of four highly trained cancer detection dogs at the center, which trains purebreds to put their superior sense of smell to work in search of the early signs of ovarian cancer. Now, Penn Vet, part of the University of Pennsylvania’s School of Veterinary Medicine, is teaming with chemists and physicists to isolate cancer chemicals that only dogs can smell. They hope this will lead to the manufacture of nanotechnology sensors that are capable of detecting bits of cancerous tissue 1/100,000th the thickness of a sheet of paper.

“We don’t ever anticipate our dogs walking through a clinic,” said the veterinarian Dr. Cindy Otto, the founder and executive director of the Working Dog Center. “But we do hope that they will help refine chemical and nanosensing techniques for cancer detection.”

Since 2004, research has begun to accumulate suggesting that dogs may be able to smell the subtle chemical differences between healthy and cancerous tissue, including bladder cancer, melanoma and cancers of the lung, breast and prostate. But scientists debate whether the research will result in useful medical applications.

Read the rest of the article on The New York Times' Well Blog by Joshua A. Krisch from September 10, 2014.

Butternut Soup with Cinnamon Cream

Enjoy this savory fall soup!

Butternut Soup with Cinnamon Cream

This creamy butternut squash soup is perfect to curl up with on a chilly winter day!
Makes 4 servings

Ingredients

1/4 cup water
1 onion, finely chopped
2 pounds butternut squash, peeled and chopped
1 carrot, chopped
1 1 1/2-inch piece fresh ginger, grated
1/2 teaspoon ground cinnamon
1 tablespoon ground coriander
3 cups vegetable stock
1 cup soymilk
salt, to taste
freshly ground black pepper, to taste

Directions

In a heavy-bottomed pan, sauté onion in water over medium heat for 5 minutes, until golden. Add squash, carrot, ginger, cinnamon, and coriander. Cook while stirring for 5 to 8 minutes, until the vegetables are browned.

Add the vegetable stock and soymilk and bring to a boil. Reduce the heat to medium and cook, stirring for 30 to 35 minutes until the vegetables are tender. Blend until smooth in a blender or food processor. Add salt and black pepper to taste.
Per serving: 129 calories; 1.4 g fat; 0.2 g saturated fat; 9.3% calories from fat; 0 mg cholesterol; 4.2 g protein; 29.2 g carbohydrates; 8.3 g sugar; 8.5 g fiber; 147 mg sodium; 184 mg calcium; 1.8 mg iron; 33.4 mg vitamin C; 14,961 mcg beta-carotene; 2.8 mg vitamin E
Source: The Lanesborough, London, England. Published in Best in the World II, Jennifer Keller, R.D., editor.

This recipe is from the  Physicians Committee for Responsible Medicine. Please feel free to tailor PCRM recipes to suit your individual dietary needs.

Shining the Light on MPNs

We had a great Shining the Light on MPNs (Myeloproliferative Neoplasms) program this past Saturday. We are thankful for: all the participants who came out and took an active role in their (or a loved one’s) treatment, Sara from CSC Headquarters, Dave and Melissa from Incyte, Leila from Leukemia & Lymphoma Society, and to our speakers: Pam Braun (author of the Ultimate Anti-Cancer Cookbook), Ron Anderson (patient advocate and coordinator for the Los Angeles MPN patient group), and Dr. David Snyder from City of Hope.

Mentally Mastering Chemotherapy

Cancer.net Blog
By David Nethero 
August 26, 2014

David Nethero is an author and a colon cancer survivor who used self-reflection, meditation, and the development of positive mental imagery to help manage some of the physical side effects of chemotherapy. He currently promotes the beneficial effects of this approach within the cancer community and seeks to help others by sharing his story.

On December 13, 2012, I was diagnosed with stage IIIB adenocarcinoma of the colon. After reflecting on this news, it dawned on me that nothing had really changed. None of us knows when our last day will come or how we will leave this world. My life expectancy was uncertain before the cancer news and remained just as uncertain after. However, I recognized that this news changed things for those around me. It forced everyone to envision what their lives would be like without me.

As I came to this realization, the impact that my cancer would have on my wife and two daughters became my first priority. Their discomfort and uncertainty became my focus. I realized that I could help them by being an example of living in the moment and treating each chapter of life as though it may be the last. The last chapter is simply a symbol of living fully and being focused on the present.

When I talk about being present to the moment, I mean really hearing what those around us are saying—hearing not just the words, but the intent and the feelings of their words as well. Being present is not a passive event that happens by simply believing in a greater force or spirit. Being present occurs when you still the mind and allow the power of the subconscious to be fully realized. You will know that this is happening when you begin to sort out complex situations quickly. Your conscious mind lets go, and your subconscious mind takes over. You demonstrate those “out of body” moments. In sports, this may be manifested in superb coordination and technique in things like playing tennis or skiing. In business, it may be manifested in keen understanding and analysis of a complex business situation.

I had learned how to use meditation and positive imagery to kick my smoking habit in the past, but was not a daily user of meditation. It was the news that I had cancer and was going to undergo chemo that motivated me to become a daily meditator. The pre-chemo “information sessions” had left me feeling overwhelmed by the long list of side effects. I had a range of emotions as I took the final steps into the chemo treatment room. I was scared, nervous, and maybe even a little excited that the chemo would be helping me get rid of the cancer. From the beginning though, I was determined not to let the mental suggestions of discomfort and pain take over and become my reality. I was committed to using the power of the subconscious mind to mentally master chemotherapy!

Every morning before I got out of bed, I meditated on two mental images, although they were more like a video than a still picture. The first was “perfect health” because I wanted to overcome the negative news of cancer and the fear of chemotherapy. The image that best reflected this perfect state of health was a doctor’s visit several years earlier when my doctor pronounced that I was in excellent condition. I tried to re-live each frame of my experience so that I flooded my mind with the emotions as well as the images.

For my second positive image, I choose that of “perfect fitness” because I had been told the chemotherapy side effects could be so severe that they might be disabling. I’ve always been an active and athletic individual, and the thought of being immobilized by the chemo was frightening. I didn’t want this fear to be dominant or even present in my mind.

The positive mental image I choose occurred on Thanksgiving morning after I completed a half marathon. I had been preparing for this race for nearly a year and ran my personal best. During my meditation I didn’t just recall finishing the race, I also replayed the strength I felt during the race, the challenge of maintaining my rhythm, and the success I had pacing myself with the other slightly faster runners. I immersed my thinking and feeling on every aspect of my performance, including the endurance and focus of my breathing.

One of the unexpected outcomes from my focus on mentally mastering chemo was my body and mind’s response while on a skiing trip with my family. During the second week of my fifth chemo session, we went to Park City, Utah, to a lodge with a base altitude of about six thousand feet. Our skiing would take us to nearly ten thousand feet! I was concerned at those altitudes about shortness of breath and my general level of fatigue, given how rigorous skiing can be. To my surprise, I skied four days in a row and had no shortness of breath and very little leg fatigue. In fact, my general energy level was similar to the level I normally have without chemo.

This is a perfect example of how imagining optimal health and fitness sets up an end game for your mind and body. The subconscious mind, properly programmed with the desired mental imagery, drives the desired outcome. The subconscious mind, properly programmed with the desired mental imagery, drives the desired outcome. Remember the subconscious mind is one million times more powerful than the conscious mind. This means that with the subconscious mind on board, the conscious mind will simply follow—it has no choice.





Read the original blog post from Cancer.net