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!

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!

 

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

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.

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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.

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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!

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Patient Power!

This post was originally published on HealthWorks Collective