The End of Trial and Error As a Drug Delivery Model?

As researchers discover that cancers can be specifically targeted with a particular drug, the question then arises – which medication works best for a unique individual with a particular cancer?  Researchers at the Fred Hutchinson Cancer Research Center and the company Presage Biosciences have created a device called CIVO™ to answer that very question.

In the past, oncologists have made their best guess as to which medication protocol would work on a particular cancer, based on data from animal models, clinical trials, and their medical expertise. In this scenario, only one drug can be tested at a time. Researchers know that there is considerable variation between how a drug affects a tumor in different individuals. The end result — a patient can be treated with no positive effect on treating the cancer, but they experience uncomfortable side effects of the medication nonetheless.

The CIVO™ device can change that model.

CIVOUsing up to eight tiny needles, a patient’s tumor is injected with multiple drugs that have been shown to have an impact on that particular cancer. The drug amounts are miniscule compared to what could be delivered to a patient for treatment purposes. The patient will in all likelihood not experience the painful side effects of a full dose of the medication. The test subjects also report little pain during the injection process.

In one to three days, doctors remove a piece of the tumor and examine it in the lab. They can then see which medication killed the cancer cells, slowed their growth or was ineffective. That piece of information can work wonders for doctors trying to determine the best drug protocols for their patients. And potentially patients will not have to suffer needlessly while undergoing a treatment that may not ultimately work well.

CIVO is has been used on animal subjects and is now part of a human study as well as a collaboration between Presage, the Seattle Cancer Care Alliance (SCCA) and the Fred Hutchinson Cancer Research Center, with funding support from the National Cancer Institute (NCI). Researchers are hopeful that this new technology will shine a brighter light on what drugs work best on which cancers in certain individuals. That will be welcome relief for patients who have just been diagnosed with cancer and are anxious about medication side effects.

 

References:

http://presagebio.com/civo-platform/

http://www.livescience.com/50566-cancer-tech-devices-speed-treatment.html

 

Building A Digital Ladder Of Engagement

Building A Digital Ladder Of Engagement

In my previous articles, I have written about using social media to connect with other patients and advocates, communicate with health care professionals, and access information to help make more informed choices about our own and our loved ones’ care. I am a passionate believer in the transformative potential of social media in healthcare, but I am also aware that each of us has differing levels of digital skills. Whether you are taking your first steps on the ladder of digital engagement, or you have reached the top, digital literacy is an important skill in your patient empowerment toolkit.

This article is for those of you who want to climb further up the ladder to become more digitally savvy with social media. And for those of you who have already reached the top, before you click away from the article believing this isn’t for you, please stop a moment. Think back to when you took your first step on that ladder. Remember the day you sent your first tweet, wrote your first blog post or asked a question in a Facebook group? Were you encouraged and supported in taking the next step in digital engagement? Was it a steep learning curve? Or was there someone to reach out a hand to help you climb the next step? If we are to truly call ourselves patient advocates, isn’t part of our role to help bridge the digital divide for all patients? I want to encourage you to think about how we might work together to extend a helping hand to those patients and their carers who are just starting out online.

What is Digital Health Literacy?

Digital health literacy is the ability to use information and communication technologies to find, evaluate, create, and communicate health information. It builds upon a foundation of health literacy, which is the degree to which individuals have the capacity to access, understand and use information in ways that enhance health. Reading these two definitions, it becomes immediately clear that those who have limited skills in either area are at a critical disadvantage when it comes to managing their own and their family’s health. Giving people access to relevant health information – and support in using that information – will help individuals make more informed decisions about their health care. Increasingly access to information and support is to be found online.

First Steps

If you are new to patient advocacy what first steps should you take to get up to speed? A good place to start is by gaining a better understanding of what it means to be an empowered patient. The Patient Empowerment Network has recently teamed up with Intake.Me to bring you their ePatient courses. These virtual classrooms are designed to help patients take those first steps on the path of patient engagement and advocacy. Follow this link to take the first two classes and be sure to check in regularly for more classes.

App icons on white cloud with smart tablet and ladderWhen you are ready to take your next step on the digital ladder, it’s time to join a social media site. Social media encompasses social networking sites (such as Facebook, Twitter, LinkedIn), blogs, wikis, video and photo sharing sites (such as Flickr, Pinterest, Instagram, YouTube), social bookmarking sites (Reddit, Digg), online communities, and user-generated content sites. With so many channels to choose from it might seem overwhelming at first to know where to begin, but as with any new skill start small and you will build up your expertise with time. Facebook and Twitter are the two of the most popular channels for healthcare conversations. You may already have your own account on these platforms, but if you haven’t it is very easy to set one up. Simply go to www.facebook.com and https://twitter.com/signup to sign up. Both have helpful step-by-step instructions to guide you through the process and at any time you can simply click on the “Help” button if you get stuck.

Facebook

On Facebook you can connect with other patient advocates and join Facebook groups related to your disease or condition. Many organizations have a Facebook presence and by liking their Facebook page you can keep informed of their activities and find other patients to connect with. As Facebook is a public platform and everything you post there can be viewed by a public audience, it’s important to consider the level of privacy you are comfortable with. You can adjust your privacy settings in Facebook at any time so your posts are visible to an audience of your choosing; for example “friends only”; “friends of friends”; or “public”. If you decide to set up your own page or group for your cause, you can easily do this in Facebook. Visit www.facebook.com/pages/create for instructions.

Twitter

While Facebook groups and pages are useful resources for patients, Twitter takes the healthcare conversation to another level. Think of it as a digital town square. Here you have a greater mix of patients, physicians, healthcare professionals, medical researchers, and the public all coming together in one virtual space to discuss healthcare matters.

Your Twitter profile is the first place someone will look when they go to your profile. If they find only a default Twitter picture and no bio details, your advocacy credentials may be called into question. Complete your profile by adding your name, a picture, and some brief details about your advocacy work so people can learn more about you.  It’s a good idea to listen first before leaping into the Twitter fray. This is true for any new community, whether virtual or in real life. This way you can understand the normative interactions existing on the platform. You don’t even have to tweet to learn from Twitter; there is a lot to learn from just following the right people but your experience will be richer if you join in with others in their conversations. If you are not sure what you should tweet, try something simple like introducing yourself, @mention someone you already know on Twitter, or retweet (RT) something that will be helpful to your followers to get your first conversations started.

Find People To Follow On Twitter

Start by following the Twitter accounts of organizations and groups related to your disease or interest. Go to their website and click on the Twitter follow button if they have one. Twitter will also populate your account with suggestions of similar groups and individuals on Twitter. Pretty soon you will have built a list of relevant accounts to follow. It’s a good idea to organize these accounts into lists; e.g. “organizations”, “researchers”; “patient advocates”; “hospitals”. You can create your own lists or subscribe to lists created by others (here’s a list of patient advocates on Twitter which I created). Find people who can serve as online role models for you. If you are already a seasoned Twitter user, reach out to someone new and offer to mentor and guide them.

How To Find Health Related Conversations On Twitter

(1) Advanced Search

The easiest way to find conversations of interest is to click the native search facility at the top of your Twitter screen and enter your keyword – for example “diabetes”. You then have a further option of performing an Advanced Search. This allows you to narrow down your search using parameters such as specific keywords, language, people, location, and date range.

(2) Hashtags

A hashtag is simply a keyword preceded by the #symbol. Hashtags create a hyperlink which will bring up every public update tagged with the same hashtag keyword. To create a hashtag, simply place # before a word; e.g. #diabetes. Familiarize yourself with the relevant hashtags related to your topic of interest. Hashtags are a useful way to search for health related topics and organize conversations around a keyword topic.

(3) Twitter Chat

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. 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.

When you are ready to join in a chat, login to your Twitter account at the specified time and search for the relevant # (e.g. #diabeteschat). You don’t have to tweet; you can just follow the conversation, especially if you are still getting used to tweet chats, but do introduce yourself and mention that you are new to the chat. Twitter chats can be quite fast-paced and you may feel as if you aren’t keeping up with every tweet. Don’t worry. You can always catch up at your own pace later by reading the chat transcript available after the chat has finished. You can also use a “chat-room” tool, such as TweetChat to help you focus solely on the chat – only tweets with the hashtag will appear on your screen so you can filter out any other twitter conversations not related to the chat.

(4) Conference Live-Tweeting

Twitter is fantastic for taking the content of conferences beyond the walls of a conference venue. It is becoming more popular for conference organizers and attendees to “live-tweet” sessions directly from the conference. You can follow along on Twitter using the conference hashtag. Many conferences register their hashtag with the Healthcare Hashtag Project or include the hashtag on their conference website.

These are just some of the many ways in which your patient advocacy can be enhanced through social media. If you have been hesitant or unsure where to start, I encourage you to take that first step by setting up an account on Twitter or Facebook. Don’t be afraid to reach out to others for help along the way.

A Rising Tide

The aphorism “a rising tide lifts all boats” was first used by President John F Kennedy in a speech to describe the idea that when an economy is performing well, all people will benefit from it. This wisdom can equally be applied to the empowered patient movement. One of the ways in which we lift each other up is through strengthening our connections online. So ask yourself, who will you lift up today?

5 Simple Steps to Become a Twitter Pro

When it comes to using Social Media, especially twitter, there is no need to worry. It is a lot easier than you think. If you follow these 5 simple steps, you can become a twitter professional in no time.

1) Create an Account

Go to www.twitter.com, and create a free account by clicking the ‘Sign Up’ button in the top right of the page. Enter your name, phone number or email, and password in the space provided. Then, chose a user name which will become your twitter handle. (See definitions below.)

2) Finish Your  Profile

  • After you have created your account, you will be prompted to add your areas of interest. The areas you choose will then be complied into suggestions for whom you could follow. You may either choose to follow all, some, or none of these accounts.
  • Next, you can upload a photo of yourself to your profile.
  • Afterwards, ‘People you may know’ appear as more suggestions for people to follow. This list is compiled from contacts from your email or phone address book.

3) Learn the Twitter Lingo

  • Follower – You “follow” other users to see their updates on your home page, and they can follow you to see yours.
  • Handle – A “handle” is your twitter username. This is the name people will identify you as. (Example: @power4patients)
  • Hashtag(#) – A “hashtag” is used in front of keywords to provide context, and to make them easily searchable for people looking for information on a specific topic. (Example: #PowerfulPatients)
  • Mentions(@) – You use the “@” sign directly in front of someone’s user name/handle to direct your tweet towards them. It will also appear in their “@Mentions” section on their Twitter account. (Example: Hey! @power4patients check this out!)
  • Retweet (RT) – When you come across a tweet you like and want to share with your followers, you can click the “retweet” button
  • Tweet – A tweet is the message you send out to your followers. Each tweet must be 140 characters or less
  • Tweetchats – Tweetchats are arranged meetings often occurring regularly on a specific time/date. A moderator oversees the conversation and focuses it on a specific topic. You can follow these chats or participate by searching or tweeting with the designated hashtag.
  • Reply – A reply is a response to another user’s Tweet that begins with the @username of the person you’re replying to. You can reply by clicking the Reply button on a Tweet.
  • Like – Likes are represented by a small heart. They are commonly used to show appreciation for a Tweet. You can see someone’s likes by visiting their profile, and your likes are also visible on your profile.

4) Composing Your First Tweet

A tweet may contain photos, videos, links, and up to 140 characters of text. You begin by clicking the icon button or typing directly into the ‘What’s happening?’ text bar. Don’t forget to use hashtags (#) to provide context or mentions (@) if you directing a tweet towards someone.

You can also shares articles you find on your favorite sites, such as New York Times by clicking on the Twitter icon. (See example below.) When you click the icon, a tweet will automatically generate making it easy to share with your followers.

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5) Search

Using the ‘Search Twitter’ feature in the top right of your homepage (See image.) allows you to look for specific tweets, users, or ongoing conversations.

Screen Shot 2016-02-19 at 12.24.26 PM

References

www.sproutsocial.com/insights/twitter-term-definitions

www.support.twitter.com

Coping With Anxiety and Depression

Patient advocate, Andrew Schorr, leads a panel discussion about different methods to cope with anxiety and depression through all the phases of a cancer journey. Jane Williams, MSN, RN, FNP, says one of the best ways is to communicate openly with your healthcare team and loved ones. Letting them know how you feel and what you need can lead to you feeling better. Remember that you’re not alone in your journey, and sharing your emotions can help you figure out what works best for you, whether that be running, meditating, etc. Watch the full video below for all the panel’s advice on coping with anxiety and depression.

Coping With Anxiety and Depression from Patient Empowerment Network on Vimeo.

Stupid Brain Cancer!

Matthew Zachary

Matthew Zachary

(Matthew Zachary is a brain cancer survivor and founder of Stupid Cancer.)

Brain cancer. Those two words strike fear into the hearts of man perhaps more than any other cancer. After all, it’s your brain. Some might argue it’s the one thing you can’t live without. (Take that, heart!)

Now, I’m not one to start pitting body parts against each other in the world of cancer. I’ll leave that up to the body-part-specific groups. Let that infighting enjoy itself for all it’s worth. Once they realize that the future of medical research is rapidly shifting to biology, immunology and genomics, rather than geography, they’ll soon realize it’s the new bandwagon to hop on.

When I was a 21-year old college senior, I was diagnosed with a very aggressive form of pediatric brain cancer: medulloblastoma. There were only 200 cases a year, the tumor was congenital and it nearly always occurred under the age of 12. I was one of the rarest cases ever seen at the time; and that did not bode well.

What’s more, the fact that I was not a child presented even more unique complications than otherwise thought. As an emerging young adult, issues of college, fertility, relationships and mental health had to weigh in. They didn’t of course since it was the 1990s and the idea of “patient-centered care” was not a concept. Back then you were lucky to be alive to deal with whatever side effects you had, all for the privilege of not dying from cancer. And those were the magic words: the “privilege” of not dying.

Considering I was given six months to live and, after those six months, a whopping 50% chance to survive for 5 additional years, I’ve done alright. January 10th, 2016 was my 20th cancerversary in somehow defying the odds. There is no rhyme, reason or explanation for how this all came to be. I just got lucky.

And that’s all anything is, really. Luck. Good luck or bad luck, it’s still luck. Yes, there are conscious choices we believe we can make, but, in the end, we are all bound by the singular commonality of chance. Call it what you will: karma, God’s will, fate, metaphysics, destiny, etc…all we have is our free will and the privilege to make choices in response to shit that is happening or in advance of shit that may happen.

Which brings me to my point. (I actually had a point, I promise)

I founded Stupid Cancer because I wished I had that kind of resource at my disposal when I was depressed, alone, afraid and without peer support. I didn’t even know that peers support was a thing. “You mean there are other college students out there with cancer who understand what I’m feeling right now?” What a concept.

It’s easy to say that no one should face cancer alone It’s entirely another thing to actually fill that need. Stupid Cancer was the community I needed that I never got to benefit from. And going back to my aforementioned comments about “all cancers matter”, I really didn’t care if I were connected with a young adult with leukemia, breast cancer, colon cancer or brain cancer. For young adults — a largely unknown demographic in the war on cancer — the playing field is leveled when you’re told those three words, “You have cancer.”

Stupid Cancer is entering it’s 9th year of operation and has proudly emerged as the largest support organization representing teens, adolescents and young adults (15-40). We’ve also inadvertently become a home for the hundreds of thousands of pediatric cancer patients who survive and grow up. It has become a remarkable nonprofit brand in healthcare that has democratized survivorship. Because, no matter your diagnosis, you have the right to survive with dignity, quality and be treated age-appropriately.

In 1996, that did not happen. In 2016, 1.7 million Americans will be diagnosed with a primary cancer. 80,000 of them will be children and young adults. We are no better or worse than other age groups; we’re just different.

And we matter.

Cancer survivorship is an art. And the art of your survivorship is how you choose to get busy living, The era of cancer survivorship has begun. It is not about how long you live, but how you live, that defines your legacy in this life.

So for now, I’ll leave “cure-hunting” to everyone else.

Can the Apple Watch Be the Next New Thing in Cancer Treatment?

Amy Gray

Apple watches are cool devices for checking email on the go and staying in touch. But researchers at MD Anderson Cancer Center wondered if they could also be a useful tool for helping breast cancer patients with their treatments.   This past December, a study was launched in collaboration with Polaris Health Directions who provided Polestar™, a health management app.

Participants in this trial will use the Apple Watch to answer questions about their symptoms, treatment side effects, and mood. The watch will also monitor physical activity, quality of sleep, and heart rate. The end result of all this monitoring? First, researchers hope to more accurately monitor each patient’s health during treatment, intervening earlier if needed. Secondly, cancer patients are undergoing huge lifestyle changes. The Apple Watch and Polestar app can help patients remembering drug ingestion schedules, and connect them with other patients who are experiencing similar challenges.

Cori McMahon, PsyD, director of Behavioral Medicine at MD Anderson at Cooper, “I think a huge piece of addressing the uncertainty felt by cancer patients is advancing their health literacy. When patients are able to monitor their own behaviors, they are able to better understand the correlations between those behaviors and how they are feeling, and even change those behaviors to improve their quality of life.” The hope is that cancer patients will feel more in charge of their medical journey. That has shown to increase positive thoughts and feelings – a definitely non-technological but time-proven aid to battling illness.

Across the pond, researchers at King’s College Hospital in London are also utilizing Apple watches and related apps in their own study. Cancer patients familiar with “chemo mind” will recognize the difficulty in keeping track of medication schedules. Thanks to a nifty feature on the Apple watch called the Taptic Engine, the cancer patient is gently reminded to take his or her medication by a soft pat on the wrist. This feature also monitors body temperature which helps doctors head off possible side effect complications quickly.

Both of these studies are concerned with patients feeling more in control of their disease management. As more cancers move from acute to chronic, lifestyle changes become very important in managing the disease. Thanks to products like the Apple watch and associated apps, patients can become more active drivers of their health – and surf the net as well!

 

References:

http://mobihealthnews.com/content/md-anderson-cancer-center-kicks-apple-watch-pilot

http://www.phillyvoice.com/cooper-breast-cancer-patients-use-apple-watches-aid-treatment/

http://mobihealthnews.com/43537/london-hospital-pilots-apple-watch-for-chemo-patients

An Ounce of Prevention is Worth a Pound of Cure

An ounce of prevention is worth a pound of cure. It creates a sense of awareness and provides a window of opportunity for you. Sometimes it is a matter of accountability and sometimes it is about breaking old patterns.

Gina

Gina Costa-Goldfarb

When my father was diagnosed with heart disease many years ago, we started eating and cooking differently. That didn’t change my dad’s ways and he ultimately died of heart disease at 62 years old. I remember he used to eat and drink things that weren’t good for him and joke about it with me and then say: “Don’t tell mommy.” That was his choice. I made a different choice long before his passing to eat healthier. If I did eat things that weren’t healthy, my body sent signals to me that these foods weren’t acceptable to me anymore.

When my mom was in treatment for ovarian cancer I found myself in Medical Libraries looking for clinical trials that would save her. When she passed it was a catalyst for me to look into prevention for my own health. I went for genetic testing at NYU Medical Center. While I don’t carry the gene for breast cancer, I have to be cautious because of the history of cancer in my family. I diligently pursued my annual gynecologist exams and additional ovary scans and blood work. Additionally, I followed up with my 6-12 month mammograms.

The result of my taking my own action on proactivity toward prevention was a diagnosis of stage 1 invasive lobular breast cancer. To take it a step further, I was originally advised by my breast surgeon to only have one breast removed. I followed my intuition and chose a double mastectomy and that resulted in even more prevention. When my surgery was completed, I was told that the other breast was pre-cancerous. If I hadn’t been my own best advocate, I would have found myself in the same shoes at another time.

Since I was diagnosed at an early stage my Oncotype couldn’t justify chemo treatment either way, but I remain on Tamoxifen therapy for probably another seven years.

I have also been discussing ovary obliteration with my oncologist and another specialist because of my lineage of cancer. In all likelihood, I will have my ovaries removed sometime this year.

When I finished treatment for breast cancer and had reconstruction surgeries, I thought to myself: “Now what? Hmmm, I have focused for a year and a half on my breasts, now it’s time to get back to the taking care of my other body parts and I got back on schedule with my dentist, gynecologist and internist all in the name of self-care and prevention as I lead my busy life balancing career, family, fun and connection with others. I knew that if I didn’t exercise extreme self-care, I would be much good to others.

About a week ago, I am finished up 4 and 5 of Moh’s surgeries to remove skin cancers from my body. In order practice prevention, we have to know our bodies, face fear and get checked out.

In some cases, I do know that even prevention is not a cure, because my mother was one who religiously (not in a hypochondria mode) went to all of her doctors’ appointments, pap smears, etc., and still she was diagnosed with late stage ovarian cancer. The bottom line is prevention cannot hurt us like lacking in self-love will.

So….., what can YOU do to take an active part in your health? What does practicing prevention look like to you? It could be something as simple as changing your diet or scheduling doctor’s appointments that we hesitate to make because we are always caring for someone else. It could also be taking care of yourself in terms of mind and spirit and working on stress reduction? In what ways can you reduce stress and overload in your life?

This blog is being shared to create awareness and remove fear. Know your body! You are the only one who does. Practice prevention and self-care. Put yourself first so that you can be around to care for others. That is my message and my gift to you on this beautiful day!

If you need help in this area or any other area of your cancer experience, reach out to me gina@newbeginningswithgina.com or visit my website: www.newbeginningswithgina.com.

I look forward to hearing from you!

Xo Gina