Multiple Myeloma Archives

Plasma cells are cells in the immune system that make antibodies, which help the body fight infection and disease. Multiple myeloma cells are abnormal plasma cells (a type of white blood cell) that build up in the bone marrow and form tumors in many bones of the body.

More resources for Multiple Myeloma from Patient Empowerment Network.

A Patient Advocate Speaks Out About Clinical Trials

Obstacles and Progress in Clinical Trials

Laura Cleveland

Laura Cleveland is a 18 yr CLL patient, an impassioned patient advocate and a peer reviewer of late phase cancer clinical trials for the NCI Institutional Review Board (IRB), with focus on trial design, accrual issues, regulatory mandates and informed consent.

Cleveland has 12 years experience in designing, evaluating, and reviewing clinical trials, and I was interested to get her thoughts on the clinical trial process, obstacles that patients face and any recent progress being made in the clinical trial arena.

Obstacles to Clinical Trial Enrollment

It is no secret that clinical trials face accrual problems. Half of all phase III clinical trials close because of insufficient accrual with only 2% of cancer patients participating. In Cleveland’s opinion, some of the biggest obstacles are:

  • The myth that clinical trials are purely experimental and that the subjects are treated as “guinea pigs”. Cleveland explained that, in trials, patients are followed much more closely than they would be in normal treatment situations and that all standards of care actually evolved from clinical trials.
  • Logistics – Enrollment is often delayed due to eligibility criteria or rules and regulations concerning testing and screening.
  • Randomization and the fear of receiving “placebos” instead of cancer medication. Cleveland explained that placebos are rarely given in cancer clinical trials. When drugs are compared, the experimental drug is compared to the Standard of Care, She went on to say that there is even a push to remove randomization from certain trials and that there are currently single arm clinical trials available.
  • Cost – If insurance does not cover the costs of extra tests and doctor visits, it can be costly for the patient. There are organizations that help with these costs, but often the patient must bear the burden of significant cost outlay.

I asked Cleveland what the one thing is that industry/government can do to make the clinical trial process easier for patients. She had a very simple 3 word answer:

“Pay for it”

Progress Being Made in the Clinical Trial Process

When asked what progress had been made recently in the clinical trial process, including enrollment, navigation and process in general, Cleveland had several comments:

  • The patient materials are becoming more understandable and easier to read. The documents are being “translated” into plain language, the informed consent form is getting shorter and less complicated. Cleveland has been working with the National Clinical Trials Network on this for the past several years.
  • Patient-friendly clinical trial results are being published so that patients can read about these trials and understand them. Cleveland has been working with the Alliance for Cancer Clinical Trials on this.
  • Cooperative Groups have been working on ways to change the consent process and clinical trial protocols. These groups get together and discuss strategy to improve the whole clinical trial process to make accrual more attractive and patient-friendly. This is a slow process but encouraging steps are being taken. Cleveland said that patients are given a clinical trial “packet” that often, they do not understand. She further explained, “There needs to be a patient-friendly summary that the patient can read and easily understand before they even attempt to read the Informed Consent form. This summary needs to be in plain language and outline the clinical trial that they are considering.” Apparently, this type of summary exists for a few clinical trials, but it needs to be the rule rather than the exception.
  • Clinical Research and Clinical Trials need to be in the vernacular. They need to become everyday words and concepts. Social media is helping in this effort. Tweets and Facebook posts help with awareness. But there needs to be more effort in this direction. Possibly, clinical research staff could visit Middle School or High School and talk to the science or health classes about trials. Children can be great advocates of causes and could bring the word home to siblings and parents. Breast Cancer groups have done a great job for breast cancer awareness; they could really help by spreading the word about breast cancer clinical trials and clinical trials in general. Much, much more needs to be done in this area. Cleveland summarized,

 “As far as getting the word out about clinical trials, it’s just not there.”

In closing, Cleveland had several words to say to patients about self-advocacy.

“Get a second opinion! Seek out a specialist in the specific disease area that you have. Find out who is doing research in that area and contact them. Use all resources available to you. You must be your own self-advocate.”

Clinical Trial Process: A Physician’s View

Interview With Dr. Jeff Sharman

Dr. Jeff Sharman is Medical Director of Hematology Research at The US Oncology Network, one of the largest networks of integrated, community-based oncology practices in the US. US Oncology includes over 1000 physicians practicing at more than 350 sites in 19 states, and treats more than 750,000 patients annually. Dr. Sharman is also on the Patient Empowerment Network Advisory Board.

The US Oncology Research Network has enrolled over 60,000 patients in about 1,400 clinical trials so far. The website offers a trial finder that will connect you with a US Oncology practice near you that has clinical trials available.

Dr. Sharman is convinced that although research adds to a physician’s workload, it enlivens a practice and adds to productivity. In a video on the US Oncology website, Sharman says US Oncology found that physicians that recruit one patient per month on average are 70% more productive than their counterparts.

I asked Dr. Sharman several questions about the clinical trial process and he was kind enough to answer.

1. From the physician perspective, what are the 3 biggest obstacles in the clinical trial process?

“Regulatory oversight has become too burdensome.  In major academic centers and cooperative groups, it can literally take YEARS to open some studies – let alone accrue the study and determine the results.  Often the key scientific questions have changed before the study is executed and the results are no longer relevant by the time they are answered.  It is a case of “death by good intentions” to see such caution in clinical trials, but unfortunately, patients are dying while studies are acquiring the requisite signatures to get started.  In community practice, we are able to cut start up time to a small fraction of our academic counterparts, but the oncology practice environment these days makes it hard to fully engage in both clinical medicine and research.  Eligible patients are often not enrolled in clinical trials that are available at their own site because physicians are not able to slow down enough to connect the dots.”

2. What is the one thing that industry/government can do to make the clinical trial process easier? Why don’t they do it?

“Reduce the barriers to enrolling patients on clinical trials at the Medicare level and possibly even provide greater incentive to sites for quality research participation.  Medicare Advantage plans until recently had regulations that actually INCREASED the cost to patients to enroll on clinical trials.  Patients had higher copay (went from 10% to 20%) AND they lost maximum cap guarantee.  It was a powerful DISINCENTIVE to clinical trial participation.  That has been improved however Medicare is currently adopting numerous quality measures in reimbursement models to practicing physicians.  Research engagement could easily be included in these quality measures and would powerfully encourage participation.  Policies that are adopted by Medicare are often followed by major insurance carriers so there could be a spill over effect.”

3. Who are the major influencers in this arena? (This includes patients, advocates, industry, government and HCPs)

“Right now, virtually all power resides with the pharmaceutical companies.  They are the only entities with the budgets to sponsor clinical trials.  Government funding and grant agencies probably account for less than 10% of current clinical research in oncology.  Government could create tax incentives for pharmaceutical companies to provide research opportunities to investigators for more investigator initiated studies.”

4. What are the major positive changes that have been made to the clinical trial  process in the past 2 years?

“The agents used currently in clinical trials are based upon a far more detailed understanding of cancer biology than the cancer drugs of only 10 years ago.  With greater precision, drugs are often more effective with fewer side effects.  Furthermore, we are far more capable of understanding the unique biology of an individual’s cancer.  In the past, we might just call a disease by a specific name, but now we can often find the unique molecular heterogeneity within a single patients cancer.  This allows us to explore investigational therapies that may be unique to an individual patient.”

5. What is US Oncology Network doing in the way of clinical trial awareness for doctors and patients?

“Our network will enroll over 4000 patients to clinical trials this year alone.    US Oncology is a management organization for many practices and through thoughtful leadership enhanced the role of research within many practices.  US Oncology research has dramatically improved relationships with sponsors and sites to bring the best clinical trials to patients.  I could talk for hours on this.”

Thank you, Dr. Jeff Sharman and US Oncology!

Please discuss your treatment options with your medical team.

Does Patient Empowerment Lead to Better Cancer Treatment Outcomes?

According to a study presented at the World Congress of Psycho-Oncology (WCPO) in late July, 72.3% of patients diagnosed with cancer defer their treatment decisions to their doctor. While this number is not surprising, it is cause for concern.

With a diagnosis of cancer comes a barrage of possible options for treatment. Often, choosing between these options can be overwhelming and intimidating, especially as there is typically not a clear answer and many uncertainties in terms of potential outcome.

How can we help patients navigate these tough decisions, such as whether or not to get a second opinion or participate in a clinical trial? How can we help patients gain the confidence they need and help them feel empowered and in control as they discuss treatment options with their healthcare team?

 Helping patients self-advocate

A survey done last year by Patient Power of 1295 chronic cancer patients showed that 73% of those
surveyed said the health information they found online helped them feel more confident and more in control of their health (see infographic at the end of this post). Learning about your illness from experts and from other patients can be a rewarding and empowering experience.

Organizations such as the Cancer Support Community (CSC) and others, including us at the Patient Empowerment Network (PEN), offer programs to help patients stand up and advocate for themselves and become informed so that they, in partnership with their heath care team, can make the right decisions for them.

Programs and resources designed to empower patients

The study presented at WCPO found that educational workshops, such as the CSC’s Frankly Speaking About Cancer program, that aim to educate and empower those affected by cancer can have dramatic outcomes in terms of patient confidence in making treatment decisions. In fact, the study found that as a result of attending a Frankly Speaking About Cancer workshop, 85.5% of respondents reported having increased confidence in discussing treatment options and making treatment- related decisions with their health care team. (Harvey, et al 2015)

 

Live audience at a recent town meeting for patients

Live audience at a recent town meeting for patients

PEN’s Town Halls and Patient Café programs give patients and carers tools and resources to discuss treatment options, including clinical trial participation, with their doctor and their family and make informed and empowered decisions throughout their illness.

Participant surveys from these meetings are overwhelmingly positive. Over 80% typically rate the event as good to excellent, and many write in emails like the following:

 

 

“Thank-you for all you do and have done to help those of us with CLL better understand this journey we are traveling.   The information you give is such a great help when I talk with my doctors and just for peace of mind in better understanding what I am facing.  Mary”

Answering your questions about clinical trials

In addition to helping facilitate conversations about treatment decisions, PEN offers a comfortable and convenient place to find user-friendly information about clinical trials. One of our goals is to help you understand the process by introducing you to people just like you who have participated in, or are considering participating in, clinical trials. We also offer opportunities to hear from doctors, nurses, caregivers, caseworkers and others about their perspective on what it means to participate in a clinical trial.

Patients helping patients

"Powerful Patients" at a recent town meeting

“Powerful Patients” at a recent town meeting

There are many resources available to help patients navigate their journey and we encourage you to take full advantage of them. If you can’t find what you need, don’t hesitate to reach out to let us know how we can better help you. And, most importantly, please remember, you are not alone. We stand beside you as a community of patients helping patients.

 

 

 

 

Patient Power Infographic

Sources:

http://www.cancersupportcommunity.org/General-Documents-Category/Research-and-Training-Institute/Posters-and-Presentations/Factors-Influencing-Treatment-Decisions-Among-Cancer-Patients.pdf

http://www.patientpower.info/about/survey-results-2014

 

 

Diary From a Female Myeloma Patient

Female – 53 years old

Diagnosed July 2014

 

My thoughts on Myeloma – June 2015

It started with an unexplainable pain in my back that spread to my chest – to my surprise I was Myeloma_Diarydiagnosed with multiple myeloma a short time later.  I don’t have the symptoms I’ve read about and I am thankful for this and any delay in what might come.  So, now I’m in a club I never thought I’d join – the cancer club. I do find comfort n connecting with those in a similar situation and I have learned from each of you.  It’s the simplified meaning of our cancer that is expressed through personal experiences that brings me clarity and peace.  I’ve been stable and we’re holding off on treatment for now.  It’s a look into the future with the promise of new and upcoming treatments so we wait.  As a cancer patient I worry often about every ache and pain. Does it mean my body is failing me…is the cancer traveling somewhere new?  Paranoia is much like cancer…they travel hand in hand tormenting the patient and their families. Lately I’ve been able to free my mind of what the future holds. I long for total freedom from the one thing I hate more than anything….I despise you cancer!  Today I will not think about you! You don’t deserve my thoughts. I challenge anyone reading this to do the same. There will be good days and bad days but any day we have to share our experience is a great day!

Success is Being a Survivor

Author and 3X cancer patient, Jodie Guerrero

Author and 3X cancer patient, Jodie Guerrero

Success means so much – its definition is reflective of the heart & soul of the perceived successor. To me – Success is not just about chasing a dream and securing it – true success is a lot deeper than pushing through a physical barrier to win the prize on the other side.

I believe true success is flying in the face of danger, marching towards the fire and leaning towards the negative perception that your efforts will reap nothing or your existence is un-important.

Success is proving that your hunch was right, your dream was correct and your gamble paid off – NOT because you put in resources to get back (something for yourself). But, rather you gave your all for the good of others, for the delivery of kindness, for love in the form of understanding and ultimately sacrificial leadership for the fulfilment of a need in your community. Success can take many years and in most cases it does. It’s a gradual slope of hard work and its rewards are up there – on top of the mountain.

Why do I believe this? I am a survivor of cancer x 3, medical negligence, a disability as a result and currently 77 doses of cancer treatments to keep me alive and very soon a bone marrow transplant. I’ve seen people lose their fight, right in front of me. I’ve heard people tell me to be quiet and stop fighting for the suffering of others. Success is being a survivor and that’s what I am!!

What do we need to be a survivor? What do you need to be a survivor? A very important element for me has been faith and foundation. My faith is everything and the family who love me, combined with my faith are my foundation. Without a strong foundation – we may topple and fall, either mentally or emotionally. However, many people find other elements of underpinning to keep them strong, through the largest hurricanes of life.

Even with these ropes of strength in our greatest storms, we may still topple – however a secure footing will help us find it easier to rebuild again and seek help when we need it. This may include a shoulder to cry on, someone to take us to medical appointments/assist with medication or someone to call a Psychiatrist. There is nothing wrong with asking for help, I believe it proves our strength and resolve.

Being a survivor takes a strong desire to continue no matter what, a resolve to not listen to the masses or those who do not support you – this may include family and friends. Believe it or not, when we have a difficult health journey, people walk away – even folk who should not or those we thought we could rely on. Some of us often discern these individuals, as they run for the hills and never return, yes – even those who are related to us.

We may not understand this behaviour at the time, but often the ones that run cannot cope with our journey (even if it’s a long-term success) and in the end, we may find that these relationships weren’t contributing to our health anyway. For myself personally – of course, there are days when physically I find my daily duties difficult to fulfil – these days, I discipline myself to know & practice when I need a little extra medication/a little extra rest and a little extra prayer, these things are what survival currently look like for me.

After my Bone Marrow Transplant, I will have less cancer pain and more resolve to survive in a different manner – I will continue forward and enjoy each day blessed and given to me. I will enjoy every day granted to me with the family and friends who love me and the ones that have stuck around – they are the ones we are surviving for. They are the people who value our survival – we may not realise how many people around us cherish our life and the energy we put into surviving, however, I know most of us have a good handful and many more supporters after that.

Treasure the people who cling to you and love your survival – you are worth more than all the gold and jewels, on our beautiful planet – your life and the days you have are more significant than you could ever know – just ask the people who love you.

Thank you for reading, please feel free to contact Jodie at the following email address: Jodie@jodiesjourney.com

Advanced Care Planning – What to Do Now!

This is important! And often overlooked, neglected, procrastinated, or ignored…for many reasons. If you are an adult, you need to think about your future and your wishes and desires in terms of your health care. And you need to discuss these wishes and desires with those close to you. It is only by doing this that you can ensure that your choices will be heard.

Chicago Patient ForumIt is sometimes a difficult conversation to start, but those around you and close to you need to hear you. Start by thinking about quality of life, choices, and what is important to YOU. Think about who you can trust to listen to you and carry out your wishes if you are no longer capable of doing so.

If you are a cancer patient, think about what treatment options are available to you, what makes sense to you and what doesn’t. Do your research, talk to your provider or medical team and talk to those close to you. Then think about those discussions and what is important to you.

This is ultimately an individual and very personal decision. However, family members need to hear and respect your viewpoint, so include them in the conversation early on.

So many times, it happens that when a patient is unconscious or incapacitated in some way, family members get together and try to make decisions. Often, the family members cannot agree on what the patient would have wanted and their opinions and emotions cause conflict, anger and heartbreak. And then, since the patient never made her wishes clear, they are not carried out.

You can avoid this.

Take action now and start the conversation.

Once you have discussed your wishes with family members and loved ones, it is important to fill out the correct Chicago Patient Forumpaperwork. Medical directives are legal documents that will state your wishes and help to see that they are followed. But do not rely on medical directives alone. Be sure to talk to family members or others close to you.

According to a recent article in the New York Times, large national studies showed that although more patients are completing medical directives, these directives are not always available to hospital staff when they need to be. Patients often keep them filed at home and they do not find their way into patient medical records or into the hands of those caring for the patient in an emergency situation. Be sure and make your wishes know to those closest to you and give them a copy of your directives.

Advance Care Planning is also a process. You can change your mind and may do that as time progresses. Be sure and update family members as your wishes change.

You do not have to do this alone. There are numerous avenues of help.

Resources

There are many resources that help with Advanced Care Planning. One good website is The Conversation Project.

Here, you can find information, a “starter kit” to help you get your thoughts together and start the conversation with your loved ones. This kit is available in Spanish, French and Mandarin as well as English.

There is also a PDF on how to have the conversation with your doctor, in Spanish and French as well as English. The website has a blog with patient stories and stories from staff members and advisors.

MD Anderson has an entire web page dedicated to Advance Care Planning . Specifically for cancer patients, this page was developed by an interdisciplinary team of doctors, patients, social workers, health educators and other health care professionals.

On this page, you will find step by step guidelines on how to start discussions with family members, talk with your provider, assign a family member to be your spokesperson and how to complete the legal paperwork necessary. PDFs are available in English and Spanish.

There is also a 5 part video series explaining the process of Advance Care Planning in depth with patient viewpoints and advice on how to make the decisions and discussions go as easily as possible.

The MD Anderson web page also includes information on Advance Medical Directive documents such as Living Wills, Power of Attorney and Out of Hospital DNRs (Do Not Resuscitate) with links to the legal documents and instructions and advice on filling them out.

This page is an excellent resource and also includes a number to call for further questions.

Don’t hesitate. Start the conversation now.

 

8 Beliefs That Can Hold Caregivers Back (from reaching out for help)

"No one can do what I can do"

“No one can do what I can do”

Family caregivers too often suffer from two very common things: overwhelm and isolation. Or, to it put another way, exhaustion and loneliness. So often, the nature of illness and trauma not only disrupts our normal ways of living, but also disrupts our connections with people who care about us. Caregivers who reach out for support gain the benefits of lessening their burdens and of feeling the warmth provided by people who care.

Too often, caregivers hold back from reaching out because of beliefs they have about doing so:

  •  Nobody else can do what I do for my loved one.
  •  My loved one won’t accept help from anyone but me.
  •  I’m too busy to even begin to think about doing anything more – even reaching out.
  •  The moment I start reaching out, our family will lose our privacy.
  •  I’m afraid of imposing on people.
  •  Reaching out shows weakness; doing it yourself shows strength.
  •  I’m afraid that nobody will come forward to help me.
  •  Since I’m able to handle things now, I’ll be able to continue to do so.

These, beliefs, while completely understandable and very common, are neither healthy for you as a caregiver or for your loved one. They get in the way of your resilience and your capacity to sustain yourself for however long your caregiving is required. Each week, I will be focusing in on one of these self-limiting beliefs and invite you to come along with me in exploring those that you are now willing to let go of and change into ones that help you not only survive, but thrive.

So let’s get started:

Nobody else can do what I do for my loved one

Think of the whole range of “things” you are currently doing. First think of the practical ones: dressing, managing and administering the meds, shopping, preparing, serving and cleaning up after meals, assisting with bathing and toileting, and so on. Now focus on the emotional and spiritual ones – showing love, being a trusted confidant, giving emotional support and comfort, etc.

Nobody else can do these things exactly how you’re doing them or would your loved one experience them in the same way if they were done by people other than you. No one else is so attuned to your loved one’s needs and preferences and, most likely, your loved one is most receptive to your way of doing these things. And, no one else would be as committed to your loved one’s comfort and be as vigilant as you are. This much is true.

But, the trap here is believing that, since no one else can do things the way you do, that no one else can do them or do them satisfactorily for you and your loved one.

Let’s take a look at some of those practical things that I listed above. Take one area for starters, e.g. grocery shopping. These days, it’s not like the days when our mothers used to look the butcher in the eye and tell him she wants a better cut of meat than the way he did it last week. Shopping simply means meal planning, list making and going out and getting the groceries – all very delegatable tasks. When you think about, I think you’ll agree that many if not most of the practical things can be done by others. Not necessarily with your intimate knowledge and way of doing things, but in their own ways. And, similarly, other people will bring their own and distinctly different ways of providing emotional and spiritual support as well.

Bottom line: Is this a belief you’ve been holding? If so, how does it serve you? How does it hinder you? How might you re-write that belief so that it serves you better? For example, “There are some things that other people can help with. I’m going to try this out with some simple things.” What practical step can you take to try out that new belief this very week? Let us know – by commenting on this blog. You’ll help yourself and other caregivers by doing so.

 

 

 

 

 

Twitter Tips and Resources for Cancer Patients

Screen Shot 2014-06-15 at 12.57.35 PM

The “Twitterverse” is pretty mainstream now and not just for the younger generations any more. Of the many, many uses for twitter, cancer information, education and support are gaining ground. Twitter is fast, easy, mobile and instantly gratifying.  Information literally at your fingertips.

Several articles have been published on the increased use of twitter by cancer patients, from cancer patients tweeting through chemo, “power” cancer patient tweeters in Japan, and a controversial article in ASCO about a breast cancer patient tweeting about her disease.

Tweeting is easy. Set up an account and go! If you are interested in getting some good information back from Twitter though, you should choose carefully whom to follow.

All news sources are on Twitter, so it’s easy to find them and follow them.  All top cancer medical centers are on Twitter and they are a great source of information on cancer research, news, clinical studies and basic medical information. Here a just a few to start with:

@MDAndersonNews

@DanaFarber

@SeattleCCA

@MayoClinic

@MoffittNews

@LurieCancer

Patient support groups for cancer patients are numerous and you can usually find one that is specific to your illness. Again, here are some to start with:

@StupidCancer – mainly for young cancer patients

@ImermanAngels

@MyelomaCrowd

@MyelomaTeacher

@MyBCTeam – for breast cancer survivors

@CancerSupportCM

@PCFNews – Prostate Care Foundation

@PanCan – Pancreatic Cancer Action Network

There are many, many more – this is just a small sampling. To find specific groups or people to follow, you should use the search engine on Twitter or do a hashtag search and see what comes up. For instance, if you are interested in following groups or people that tweet about stomach cancer, do a search and research their profiles. For instance, I just searched “stomach cancer” and this is what came up:

Screen Shot 2014-06-15 at 12.34.44 PM

You can now go to these twitter profiles and see if these are some people that you would be interested in following.

And if I do a hashtag search for #stomachcancer, I find this:

Screen Shot 2014-06-15 at 12.38.42 PM

So you can go to these twitter profiles and see if any of them appeal to you.

It’s quite simple and you can follow some groups and people for a while and then “unfollow” them if their tweets are not what you were looking for. Once you follow people or groups that you know have the same interests as you, you can use them as your “news stream” and tailor your stream to the kind of information that is most suited to you.

Twitter is easy, quick and gets to the point right away (it has to – with only 240 characters allowed by tweet!) It’s a great way to keep informed and have custom-made information at your fingertips.

Patient-Selected Controlled Clinical Trials: A Valid Proposal

Lagging patient accrual numbers for cancer clinical trials has always been an issue. In a previous post, I mentioned several reports that showed that the current system of enrollment for clinical trials just isn’t working for patients, researchers or sponsors from pharmaceutical companies.

In the current issue of the ASCO Post, Jim Omel, MD and Karl Schwartz, MFA have written a great article proposing a new type of clinical trial: A Patient-Selected Controlled Trial.

The authors explain that this approach is not meant to replace the randomized controlled trial design “when it’s feasible and ethical to use it”. They suggest that it be used as “an additional tool to consider when comparing treatments for cancer, such as (but not limited to) when the compared interventions have very different risks, or when both treatment protocols can be used off-study.”

CityofHope0897The patient-selected controlled trial would let the patient decide whether to be randomly assigned to treatment or to choose the treatment arm they want to be in. Their decision would be based on their personal situation and, most often a detailed discussion with their physician.

This type of trial would most likely result in out of balance study arms. This shortcoming could be mitigated by factors such as the following:

  • This patient-selected design would be more attractive to patients, resulting in larger studies and faster accrual.
  • Statisticians may be able to apply methods to achieve balance – such as limiting accrual in the rapidly enrolling arms
  • Propensity scoring which can anticipate and account for confounding variables in order to adjust for bias may be used in this type of trial.
  • Study doctors can provide or capture the reason for choosing one arm or the other, thereby helping to interpret outcomes and to determine whether a larger study is needed.

and others.

The authors argue their case in part by saying, “We should not let the perfect be ‘the enemy of the good’ – that is, insisting on perfection can result in no improvement at all” In other words, isn’t it better to have a good, complete patient-selected controlled trial with a bias that can be mitigated than wasting time, energy and finances on a randomized controlled trial that has to be terminated because no one shows up.

The authors conclude,

We submit that the patient-selected controlled trial is clearly superior to any randomized clinical trial that is never started because it’s judged to be unfeasible, or to any randomized controlled trial that is terminated because of poor enrollment. What good is a statistically perfect well-designed randomized controlled trial if no one signs up? We hope and expect that the patient-selected controlled trial provides another way to do good science while practicing good medicine.”

Please read the full article here and comment!

 

 

Can(cer) Do! – Why We Should Talk About Cancer

Carol Preston

Carol Preston

I saw two productions about cancer in a 48-hour period this weekend…and went home smiling.

The first, produced at Washington, DC’s Theatre J, was called The Prostate Dialogues. It was written and acted by a very fine local raconteur, Jon Spellman. In 75 minutes – with no break – John unfurled his prostate cancer story from diagnosis to his treatment decision (surgical extraction at Johns Hopkins). Along the way, Jon peppered his experience with humor and a graphic depiction, through a normal and happy cell called “Glen,” of the development of those nasty mutated cancer cells. A five-minute description of a 20-year process. Brilliant!

Two days later, my husband and I saw a newly released movie in the U.S., “The Fault in Our Stars,” based on the best-selling, young adult book by John Green. The movie had received excellent reviews, so despite the subject matter, we went to see it. It’s about two teenagers, each with terminal cancer, who fall in love. Hazel and Augustus are doomed. We know it from the start of the movie. And yet, the film was done with grace and understatement and humor. There was no hyperbole. The acting was honest including the antics of Augustus’ now-blind-from-cancer buddy Isaac. Was it heart-breaking? Yes. Was it sometimes funny and often uplifting? Also yes.

As a nearly eight-year survivor, I expected to shed many tears at this movie. It was my non-cancer husband who welled up and forced himself not to cry in public.

Here’s the takeaway: In the U.S., we are talking about cancer! We are talking and laughing about it a lot and in the open, often with people who don’t have cancer. Cancer no longer is quietly discussed in the back room, in hush-hush tones with family and our doctors. Cancer has seeped, no, it is flowing into the mainstream consciousness. The more we learn, the less we fear. The less we fear, the more we live our lives through family, travel and work.

The mantra of my doc at MD Anderson in Houston is to “live large.” In other words, say ‘yes’ to as many opportunities and invitations as possible. If you live in the DC area, go see The Prostate Dialogues. In the U.S., cry and laugh with Hazel and Augustus at “The Fault in Our Stars.” And remember, cancer is not a dirty word. It’s a condition that we face, like Hazel and Augustus, with grace and humor, and now more than ever, in the open.

 

 

 

 

 

Mobile Apps for Cancer Patients

Which apps can be used by chronic cancer patients to help them with their illness and overall health?

There are literally thousands of medical apps in the marketplace and it is very difficult to sift through them and find out which ones are easy to use, practical and helpful.

I did some research, asked some patients, and read a lot of reviews to try and get an idea of which ones were helpful for chronic cancer patients.

Research and Information

I asked Cindy Chmielewski, (@MyelomaTeacher),  a multiple myeloma survivor and patient advocate for Imagethe disease what apps she uses to stay abreast of the latest news in cancer research and treatment.  She commented,

Cancer.net app is a wonderful resource for patients.  It provides information on specific cancers, provides a place to write questions, write/record answers, list medications, record symptoms and more. “

Cindy then gave me a list of some other research and information apps that she uses regularly to stay informed:

 

Myeloma Post

ASCO Journals

Oncology Times

MedPage

Cure

ASCOPost

JNCCN

AACR

MMApp

Clinical Trials

ClinicalTrialSeek by Novartis lets patients search NIH data for clinical trials that could be a fit based on the treatments and diseases under investigation, location, development phase and other aspects of the studies. The app  also provides information about how trials work and those that the company and others are sponsoring. Eli Lilly and others have launched similar apps in hopes of educating patients about clinical trials–and perhaps boost enrollment too.

Support and Networking

There are numerous patient support tools that help cancer patients stay connected with other patients and friends.  CaringBridge is a popular one.  And of course,  joining and participating in specific groups on Facebook is always a popular and easy way to connected and stay current.

For lymphoma patients, the Focus on Lymphoma app  from The Lymphoma Research Foundation includes information on lymphoma subtypes and disease stages, a set of tools to help patients manage their health and a variety of resources and networks that assists them and supports them through treatment and survivorship.

Fitness apps and nutrition and healthy eating apps are also important to keep fit, eat healthy and maintain a healthy lifestyle.  The internet has an abundance of these and each person can find one to fit his specific needs.

Notes and Organization

To stay organized and remind themselves of meetings and commitments, many patients use apps.  Cindy Chmielewski comments,

“Before Chemobrain, I didn’t need to rely on reminders, but now I use the calendars, reminders and a notes app on my iPad.”

Jenny Ahlstrom, a multiple myeloma survivor, developed an app,ChemoBrain DocNotes, specifically to help patientsImage remember the important questions for their next doctor’s visit and what was said during the appointment.

ChemoBrain DocNotes provides patients with an easy way to record questions , either by voice or by text for their next doctor visit. Patients can also record their doctor’s visit in a voice memo and play it back later.  Jenny Ahlstrom comments,

“Remembering what the doctor said during the visit is an equally big challenge, especially when the doctor covers your diagnosis or treatment plan using complicated medical terms”.

Cancer caregiver, Sharon Reamer, adds,

“I try to be at every appointment to be an extra set of ears for my friend.  Now if I can’t be there, she can record the visit and email me the file so I know what the doctor said.”

Another cancer survivor, Liz Smith, volunteers,

“I am jotting down questions in Chemo Brain Doc Notes any time I think of an issue for my next appointment.  The app is simple and easy to use.”

Medication Reminders

Oral cancer treatments are more and more common, especially for chronic cancer patients.  Studies, such as the one conducted by research leader and CML survivor, Giora Sharf, show that medical adherence is an important topic.  Why is it so hard for patients to take their meds, and what tools would make it easier?

In this video,  Giora explains that 26% of the patients surveyed would use a mobile app to remind them to take their medication.  Here are some of the medication reminder apps available:

Pillbox alert

Image

My Pillbox

Medisafe

Image

RxmindMe Prescription

Pillboxie

And for those who want to go with a non-digital reminder, there are vibrating pillboxes, watch alarms, etc on epill

Image

Andrew Schorr, CLL and MPN survivor, and founder of the Patient Empowerment Network and Patient Power, has a rather unique way to remind him to take his oral medication.  Andrew really likes Bruno Mars and so every day, morning and evening, Andrew’s daughter set his iPhone up to play the song, “Lazy Day” and show the mention “Take Medicine”.  An easy and fun way to remember!

Find the App That Suits You Best

As chronic cancer becomes more prevalent, and apps get more sophisticated and easier to use, more and more patients will use them.  There are an overwhelming number of apps available; you need to find the one that suits you  best.

The above information is, of course, my opinion and the result of my gathering of information and is not a ‘formal’ review of these apps.  Comments or advice and suggestions about apps is more than welcomed in the comment section below!

 

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

Clinical Trials: Good, Bad & Ugly

Clinical trials for cancer patients can be a life-saving opportunity. But most clinical trials do not even finish due to lack of patient participation. Why is this?

One big issue is that many cancer patients do not hear about relevant clinical trials. Physicians often do not mention them because either they don’t know about them or because of time constraints. It takes a good deal to time to explain about a clinical trial to a patient and then to help walk them through the approval process and answer their questions. Many physicians do not have the time or the staff to do this. And often, cancer patients are too overwhelmed to inquire.

I asked Andrew Schorr, two-time cancer patient and founder of PatientPower.info, why he thought that more patients don’t know about clinical trials when they are first diagnosed with cancer. Schorr answers,

“When patients are just told they have cancer, they feel afraid and alone. They rely on their doctor for guidance and don’t think of looking elsewhere for information. It does not occur to them to think of participating in a clinical trial for treatment.”

I asked Jim Omel, a 13+ year myeloma survivor and retired family physician who has participated in NCI (National Cancer Institute) peer reviewed research and who is a patient advocate working withThe Alliance for Clinical Trials in Oncology,  about his thoughts on why more patients aren’t aware of clinical trials. Dr. Omel explains,

“We definitely need to elevate the consciousness of the public about clinical trials; there’s no doubt about that. We need to educate the public about the providing of tissue, sharing clinical data. So many people have this misconception that they are “guinea pigs” which is a term we all abhor.” But it’s a term that people relate to clinical trials; they see themselves as test subjects rather than receiving the best of care, the most up to date care that you get with a clinical trial. A lot of it is public perception. We have to change this. As cancer research advocates, we are trying our best to get the word out.”

The internet and social media have done a good job in trying to get the word out about clinical trials. The government website, ClinicalTrials.gov lists all trials by illness and location and includes some brief help topics and a glossary of terms. And Cancer.gov  lists clinical trials specifically for types of cancers.

Image

Some patient support groups like PatientsLikeMe have their own clinical trial search tool. I took a look at the PatientsLikeMe tool and it did seem quite a bit more user friendly than the government site. It also mentions how many members of PatientsLikeMe may be eligible for the trial, links to a glossary and to the government site for more detailed information. I asked Paul Wicks, Vice President of Innovation at PatientsLikeMe about the tool and he explained,

“PatientsLikeMe’s global clinical trials tool draws on open data to match patients from around the world with a wide range of clinical trials based on their condition, location, age, or any other criteria. Patients can search for and identify a range of trials using a simple interface, and create a profile so they can be automatically alerted to trials that match their criteria.”

Image

When asked about the efforts of individual foundations and organizations in informing their members about clinical trials, Dr Omel explains,

“In the case of myeloma which I am most familiar with, the Multiple Myeloma Research Foundationand the International Myeloma Foundation have done a pretty good job of educating myeloma patients about new drugs and research going on. If you think about it, we have had six new drugs for treatment of myeloma in the last decade and that is unbelievable progress in oncology. The myeloma community really does work together and patients realize that we have these new drugs because patients before us signed up for those clinical trials.”

Another big issue with recruiting patients for clinical trials is the complexity of enrolling in the trial itself. The informed consent process is difficult to understand and many patients are daunted by the process.

Physicians can help explain the process, but again, often do not have the staff or the time. Families often cannot help unless they are familiar with the process. Patient Advocates certainly can and do help if they are available.

There are many issues to be covered during the enrollment process. What is the criteria for enrollment? How far does the patient have to travel? Will the patient have insurance coverage for standard care during a clinical trial? Will the patient get the new fancy drug or will they get a placebo or other type of treatment? Will the trial accept patients that have other health issues like a heart or kidney condition?

Informed consent should be written for the patient, but it is not. Providers and drug manufacturers want to be protected and often the complex medical and legal terminology included in the document is discouraging to a patient.

Efforts have been made to simplify the informed consent process. Fact sheets have been developed and videos have been made that try and explain the process easily so patients can understand.

PatientsLikeMe offers their clinical trial tool that helps simplify the process for their members, and other patient support sites may help walk their members through the process or have tools to help simplify things.

During my research on this subject, I came across an interesting product and website. Mytrus Enroll is a software product that simplifies  the informed consent process. The Mytrus website states:

“Enroll is a gateway technology that allows critical disclosure information to be condensed into an easy-to-understand, digitized format using animation, interaction, and visual imagery. Patients can interact with the app, marking terms and concepts that they want to discuss, completing easy to use knowledge assessments, and providing regulatorily ccompliant signatures to indicate their consent.”Image

I spoke with Michael Tucker at Mytrus and he explained that Mytrus is making great headway in the clinical trial tool arena. The company started by developing technology as a response to patients who wanted to participate in clinical trials but lived far away from a trial site. Mytrus wanted these patients to be able to enroll and participate in a trial mostly from their own home, reducing the amount of times they would have to go to the trial site for visits. With the technology they developed, patients can enroll remotely and go through the screening process using the Enroll software.

Mytrus tries to give patients a better understanding of the informed consent process and the clinical trial screening criteria by video (see here for a sample video). All Mytrus and Enroll videos and information are IRB approved.

Tucker went on to say that several studies have been done to determine the effectiveness of the video approach to the informed consent process. One such study done at the University of California at San Francisco showed that the comprehension and recall rate was superior in the video approach (75%) as opposed to the paper approach (58%).  Better comprehension is better for the patient and better for the study overall. Tucker further explains,

“The conclusion from this that is usually drawn is that if you have a higher comprehension rate, you will get better qualified patients. More patients will participate if they understand what is going on.”

While efforts are being made to better inform patients and the public in general about clinical studies, and the internet and technology seem to be helping the informed consent process, there is still a long ways to go as far as streamlining or adapting the clinical study process to make it more patient-friendly.

A big deterrent to adequate patient accrual for clinical trial is the way that the studies are designed. Often, the screening is very restrictive. Patients with any other conditions or illnesses besides the condition being tested are not permitted to take part in the study, greatly reducing the pool of potential participants.  Furthermore, often the patients are randomized in the study and many may never receive the new important drug being tested. Understandably, many patients react negatively to this and will refuse to participate in such a study. These obstacles will be difficult to overcome. Statisticians that build these studies want the restrictions and the randomization. Until there is a resolution to this problem, patient accrual will always be an issue. In an article he wrote for theMyeloma Beacon, Dr. Omel comments,

“What good is a statistically perfect, well-designed trial if nobody shows up?  Our current system is broken and needs new approaches to randomize patients based on their informed right to choose their own treatment.  This profound decision affects their life and their cancer.  Treatment should be their choice…

To all who denounce such an unscientific approach, please outline an improved system based on a patient’s absolute right to choose his treatment.  We can ‘think outside the box’ and use a different approach, or we can keep the same system and get the same results—3 percent participation with many drop-outs.  Without a change, we will continue to observe that only a tiny minority of clinical trials open, accrue, close, and are reported in a timely manner with useful information for clinicians and cancer patients.”

Resources:

http://www.pmlive.com/blogs/digital_intelligence/archive/2013/december/digital_recruitment_for_clinical_trial

http://www.mytrus.com/

http://www.ihealthbeat.org/insight/2012/social-media-offers-new-recruitment-strategy-for-clinical-trials

http://www.sireninteractive.com/sirensong/dr-katz-from-fda-talks-social-media-and-clinical-trials/

http://www.eyeonfda.com/eye_on_fda/2011/12/clinical-trials-and-social-media-part-1-in-an-intermittent-series.html

http://online.wsj.com/article/PR-CO-20130705-906183.html

http://www.patientslikeme.com/clinical_trials

 

This post was originally published on HealthWorks Collective

How Chronic Cancer Patients Use Social Media to Stay Informed

New research and treatment has made many cancers that were previously terminal now chronic. Patients live with the condition and daily go about their lives. But often, they do have to manage their cancer and often they worry about reoccurrence, side effects from medication and progression of the disease.

The chronic patient is often “forgotten”.  They are under treatment, doing (fairly) well, and doctors and the media are focusing on the more urgent issue of treating the acute or advanced cancer patient.

Chronic cancer patients want to know and understand their disease.  They would like a cure and they seek out the newest and latest information online looking for answers on treatment options, and how to best live with their disease.

Where can chronic cancer patients go for help online?

There are numerous sites for help with living with chronic cancer.  Many are disease-specific, offering news about new treatments or research.  There are several good video channels that offer interviews with cancer specialists about treatments, clinical trials or other information on specific cancers.  There are patient support networks and numerous Facebook pages that offer patients the opportunity to connect with other patients and post discussions about all aspects of their disease.

There is an overwhelming amount of information online and often, it is difficult to sift through all of it.

I have listed a few of these sites below.  In no way is this a comprehensive list, but I have asked several cancer patients and opinion leaders for their input and have added their thoughts to the list.

Resources for Chronic Cancer Patients

Cancer.gov

CLL Global

Patient Power

CanCare

Oncology Tube

National CML Society

Leukemia Lymphoma Society

Patients Against Lymphoma

CLL Topics

Institute for Myeloma and Bone Cancer Research

The Myeloma Crowd

International Myeloma Foundation

 

Facebook groups

Essential Thrombocythemia

Myeloproliferative Neoplasms

Polycythemia Vera & Budd-chiari Syndrome Awareness

 MPN Forum

Myeloproliferative Neoplasms 

 

Patient Opinion Leaders and Advocates

Another great way to obtain information on chronic cancers is to follow patient opinion leaders (POLs) on social media channels.  These patients have been living with their specific cancer (or cancers) for some time and have spoken about their experience (often publically), written books and articles about it, formed groups or even organizations or companies around chronic cancer.  They have Facebook pages, tweetchats, blogs, video programs and websites.  They organize patient meetings, interviews with physician specialists and events around their illness.  They have the experience and know-how to conduct excellent informational programs for other patients; they are a wonderful source of information.

Image

Andrew Schorr, @Andrew Schorr, founder of PatientPower and author of the Web Savvy Patient has been in remission from Chronic Lymphocytic Leukemia since 2001.  In 2012, he was diagnosed with a second cancer, myelofibrosis.  Andrew now leads a normal life, thanks to a new targeted oral therapy.  He has been a leader in patient education since 1984 and is considered to be one of the most respected and reputable Patient Opinion Leaders.

When I asked Andrew why he did what he did, he responded,

“I feel a responsibility to try to help other patients do better because of something I’ve learned through my experience. While others might wish to protect their privacy I “go public” with the hope to ease the journey of other cancer patients like myself. It helps me feel I am doing something significant and helps all of us know we are not alone, but rather a real community.”

Patient Advocates also help other patients by coaching them through living well and coping with their disease.  They use social media to spread the word about their illness and educate patients around the world.

Image

I also spoke with Cindy Chmielewski, @MyelomaTeacher, a former elementary school teacher and a multiple myeloma patient that is now a patient advocate for the disease.  Cindy is on the Board of Directors of the Philadelphia Multiple Myeloma Support where she is in charge of the Patient Education Library and Patient Advocacy. – She speaks at support groups, tweets about myeloma, and participates in several online support communities.

When asked why she did what she did, Cindy answered,

“Everyone needs a purpose in life.  Being a teacher for 28 years before my medical retirement I knew my purpose in life was to be a facilitator of information. When I regained my strength after my Stem Cell Transplant opportunities began to fall into my lap. I had some very good mentors when I was newly diagnosed. I am very grateful that I able to pay it forward. Sharing what I learn gives my cancer experience a purpose. Using social media allows me to reach a larger audience.  I am still a teacher, but now I teach a new subject with different students. We are all in this together and we can gain strength from one another. My life once again has meaning”. 

The Power of Social Media

Social media has drastically changed the idea of patient empowerment. Patients all over the world can connect, educate themselves and their family members, network, and instruct and educate others. And they are doing just that. The day of the passive patient is over: Welcome, empowered patient!

Image

Patient Power!

This post was originally published on HealthWorks Collective