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.

 

 

 

 

 

A Tribute to AJ Halavacs

AJ and Jane Halavacs

AJ and Jane Halavacs

 

AJ Halavacs of Fort Lauderdale, FL died unexpectedly earlier this month. Since learning of his death a few days ago, I have been shaken to my core.

I had met AJ only briefly on April 12 at Moffitt Cancer Center in Tampa, FL. But what an impression he made! With his big personality and his story.AJ and Jane

AJ was among the patient guest speakers at a CLL Town Hall meeting at Moffitt, sponsored by Patient Power. The educational symposium featured two CLL specialists and was attended by more than 150 CLL patients and their families and friends.

He was a tall, strapping, handsome man with a ruddy complexion and a radiant smile. He never stopped smiling. You wouldn’t have known that AJ had suffered from CLL for many years. And that four months earlier, he’d been confined to a wheelchair, weak, with an ugly rash covering his body.

None of the treatments AJ had endured, much of it chemotherapy, worked for very long or very well. Until ibrutinib. The now FDA-approved treatment, trade name Imbruvica, is considered a breakthrough immunotherapy to treat CLL. It targets the malignant cancer B-cells but leaves the healthy T-cells of the immune system in tact. Best of all, it’s an oral medication. Three capsules a day. No chemo.

Days after AJ began to take ibrutinib in a clinical trial, he was out of that wheel chair. The rash disappeared. He quickly regained his strength. He traveled to Amsterdam and North Carolina for business. He expressed great joy in his longtime marriage to Jane, who had accompanied him to the town meeting, and unbridled pride in their three grown sons, one of whom is engaged to be married. Because of his seemingly miraculous response to ibrutinib, AJ and Jane were looking forward to the rest of their lives.

AJ with patient speakers Linda Weiser and Barb Skonicki

AJ with patient speakers Linda Weiser and Barb Skonicki

Something happened, however, after April 12. Apparently years of CLL and treatments had taken too harsh a toll. AJ developed Richter’s transformation, a CLL patient’s worst medical nightmare.   AJ Halavacs died at Moffitt Cancer Center on June 3.

We CLLers think of these treatment advances as a bridge. Cross a bridge with a particular treatment to make it to the next bridge. Our goal is to cross enough bridges so that we can live with our CLL and die from something else. AJ reminds us that there is no cure yet for this disease. Patients remain hopeful, but after AJ’s death, this patient feels more vulnerable and less sure-footed about the path forward.

Nonetheless, I am glad that I met AJ Halavacs and learned about him. Mostly I am honored to have circled his spirited, positive orbit for a few hours. He’d be the first to tell CLLers not to waste a minute fretting, “live large” and say ‘yes’ to every opportunity for the time we’ve been given.

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

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My Pillbox

Medisafe

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RxmindMe Prescription

Pillboxie

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

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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!

 

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