Monthly Archives: January 2016

The Conversation: Supportive Care for Lung Cancer Patients

MyLifeLine.org brings you this resource through a partnership with Helsinn and Patient Empowerment Network.

Meg Maley, RN, BSN, hosts a panel discussion around the topic of supportive care for lung cancer patients. Dr. Eric Roeland, Assistant Clinical Professor of Medicine at UC San Diego, Niki Koesel, MSN, ANP, ACHPN, FPCN, Director of Palliative Care, Carolinas Healthcare System, Levine Cancer Institute, and Randy Broad, a 7-year lung cancer patient, join in the discussion.

The participants discuss supportive vs. palliative care, explaining that palliative care is actually an additional layer of support for patients and families. Discussing palliative care at the time of diagnosis will help the patient learn about all options and will lead to the best quality of life for cancer patients.

The Conversation then turns to the healing vs. curing debate. Niki and Randy both agree that healing is individual and depends greatly on the patient’s situation and perspective.

The panel then discusses the patient experience during treatment for lung cancer, and the challenges involved. Discernible challenges for patients going through treatment, especially chemotherapy, are the fear of hair loss and the onset of nausea.

Niki then talks about cachexia: what it is, and how it can be treated. She further explains how cachexia can be a heavy burden for patients and caregivers, and references several treatment options such as medications, energy conservation therapy, and cognitive behavioral therapy.

The Conversation concludes with all participants agreeing on the importance of communication and shared decision-making with the medical team.

Watch and listen as these esteemed participants discuss topical issues in Supportive Care for Lung Cancer Patients.

The Conversation: Supportive Care for Lung Cancer Patients from Patient Empowerment Network on Vimeo.

supportive-care-for-lung-cancer-patients

 

 

 

Activate Your Support Network Online

A cancer diagnosis can overwhelm entire families in addition to the physical and emotional toll it takes on patients. Many questions are raised that often go unanswered, at least initially. The sheer volume of communication needed to provide updates to family members and friends can also be overwhelming. MyLifeLine.org, a Denver-based non-profit focused on social and emotional support services for cancer patients, was created to help solve this problem.

MyLifeLine.org exists to reduce the stress and anxiety associated with a cancer diagnosis. We connect cancer patients and caregivers to their community of family and friends for social and emotional support. We provide free personalized web sites, communication services, cancer resources and tools that allow patients and caregivers to share their journey and focus on healing.

STAYING CONNECTED

MyLifeLine.org was founded in 2007 by Marcia Donziger, who was diagnosed with ovarian cancer in 1997, when she was 27 years old. She felt overwhelmed by the volume of communication, during a time when she was struggling to fight the cancer inside her. Marcia couldn’t physically return all the phone calls herself, and found it emotionally draining to repeat the same information about her condition, over and over.

In 2003, Marcia became aware of a special young woman, Lori Arquilla Andersen, who had just been diagnosed with cancer. Marcia was profoundly inspired – not just by Lori’s strength through crisis, but also by the way she harnessed the tools available to stay in touch with her family and friends during her illness. Through her own personal website, Lori posted her progress and courageously inspired all who followed her struggle. As time went on, Lori’s support network expanded beyond her imagination. People visited Lori’s site to write encouraging messages, offer help to her family, or just stay updated and keep her in their prayers.

Inspired by Lori and her family, Marcia saw the tremendous benefit for cancer patients to communicate via a personal website. Sharing updates and managing caring messages via one central website can help everyone touched by cancer to deal with it. Marcia saw an opportunity to make a difference and extended the benefit of free, personal websites to all cancer patients. Thus MyLifeLine.org was born as a non-profit organization.

BUILD YOUR SUPPORT COMMUNITY

I became involved with MyLifeLine.org due to my own experiences and the promising role technology plays to help patients and caregivers. I live in Denver with my wife and two young children while the rest of my extended family resides on the East Coast. When a family member experiences a health issue it can be difficult to travel to see them and provide support in person. Today’s technology, however, ensures that every patient can stay connected to their entire support community, and each member of the support community has the ability to stay involved and provide strength and inspiration to the patient. Research has shown that a thriving support community is beneficial to patients’ healing process.MyLifeLine.org Devices

  • A recent study of 735,0000 cancer patients included in the Surveillance, Epidemiology and End Results program found that improving social support for our patients may be equally as important as providing effective therapy, and it is less costly to develop and implement.1
  • The provision of practical support increases the likelihood of adherence to evidence-based medicine 3.6 times.” 2

Patients aren’t the only ones who can benefit from a strong support community. Caregivers, the people taking care of the patients and coordinating communication and care, need to be supported just as much as the patient. It can be equally overwhelming to be the primary person supporting the patient and managing care, appointments, medications, meals and transportation on top of lives that are already busy.

WHAT PATIENTS & THE ONCOLOGY COMMUNITY ARE SAYING

A goal of MyLifeLine.org is to become the preferred communication platform for the cancer community. We recently partnered with the American Cancer Society to provide web sites and social support services to their constituents, and the American Cancer Society will direct patients and caregivers to MyLifeLine.org’s services.

Since our launch in 2007, we have helped more than 144,000 people affected by cancer globally and are on track to add 1,500+ new patients and 18,500+ new family members and friends to our list of registered guests in 2015.

I encourage anyone facing cancer, or anyone who knows someone with cancer, to consider setting up a free site with MyLifeLine.org. We’ve heard from a countless number of people how it positively changed their experience with cancer. A family living across the country was able to know when their loved one had a chemo appointment. A small town rallied around a hardworking individual to raise thousands of dollars for their medical costs. A single woman was able to schedule meals delivered to her from her eager to help group of friends. We heard from one patient who loved MyLifeLine.org because he was able to have a sense of normalcy with his friends; since they were up to date on his condition, they could spend time together without asking about his cancer.

MyLifeLine.org goes beyond the personal websites to connect patients and caregivers to their support community, and allow them to gain control, be empowered and become their own advocate. The service is offered for free to all people impacted by cancer.

MLL-empowered


 

1. Aizer AA, Chen M-H, McCarthy EP, et al: Marital status and survival in patients with cancer. Journal of Clinical Oncology 31:3869-3876, 2013

2. DiMatteo MR: Social support and patient adherence to medical treatment: A meta-analysis. Health Psychology 23:207-218, 2004

 

A resource for patients with metastatic breast cancer: MBCInfoCenterSM

We know that it can sometimes be a challenge for patients with metastatic breast cancer (MBC) to find the right information and resources. MBCInfoCenter, brought to you by Eisai Inc., is a Web site that was created especially for patients living with MBC and their caregivers. Designed as a one-stop portal, MBCInfoCenter provides valuable information and resources from trusted organizations across the Web.

MBCInfoCenter was recently updated to expand both the number of resources and the featured organizations. Knowing that everyone and anyone can be an advocate, MBCInfoCenter aims to empower both patients and caregivers with the knowledge to help them advocate for themselves and others.

Topics include information about MBC and treatment, living with MBC, communities, practical resources, and caregiving. Each topic includes specific subcategories that cover key areas impacting patients living with MBC.

Lastly, MyLifeLine.org is now a featured organization! We are happy to be a part of MBCInfoCenter, and we hope that you will check it out today at www.mbcinfocenter.com.

Metastatic Breast Cancer Info Center

 

Wellist’s Story

This is a guest blog post by Wellist, an online directory of 3,500+ (and growing) services in Boston.

The moment you or a loved one hears the news, time stops. No matter who you are, getting sick was not part of the plan. We know that with any kind of diagnosis, life can become more complicated. There are the obvious lifestyle complications, like appointments to get to, prescriptions to be filled, and symptoms to be monitored–the things that make up the “medical” part of a diagnosis.

But then there is the impact that being sick and dealing with a diagnosis has on one’s life. Tasks that once were easy, like picking up around the house, cooking a family dinner, or shoveling the steps after another snowy winter, suddenly are overwhelming. The to-do list can pile up, leaving patients and their families feeling flat out exhausted.

Every day, we see people shoulder this incredible burden without enough support. And we also know that person has their own journey, and their own unique needs. This is the reason Wellist, an online directory of 3,500+ (and growing) services in the Boston, exists. We also understand that in times of challenge, finances can be tight. Wellist is completely free to use thanks to our partners, Massachusetts General Hospital Cancer Center, Beth Israel Deaconess Medical Center and Quest Diagnostics.

We help young mothers who have just been diagnosed with an aggressive form of cancer find someone to watch their kids after school. We’ve helped men living alone to find someone to mow the lawn, and we’ve helped daughters who no longer live with their parents to make sure Mom and Dad are eating properly and that the house is kept clean. No matter what your story is, we have solutions to help.

We have spent months working with nurses, clinicians, and social workers from top healthcare providers, as well as patients and families, to create a directory of services to help those who are battling and recovering from illness. We provide recommendations and our users choose what’s helpful to them, whether it’s a financial assistance program to help with bills, or oncology-specific massages. With Wellist, users can set preferences for price range or location, and can then save those to their profile.

In addition to providing this directory, Wellist helps patients and their families find the support they need from people who care about them and want to help in a meaningful way. “I don’t want to ask my friends to clean my house but it’s what I really need,” is a phrase we hear over and over again. Friends and family want to help, but usually don’t know quite what to do. Wellist’s Wellistry, a shareable gift registry, allows patients to make a list of what services would be most helpful and a family member or that patient can share it with others who want to help.

Wellist’s team is deeply dedicated to the mission to make life easier for those undergoing health challenges. Every team member has come from a place where they have experienced the need for Wellist in their own lives. While our services primarily cover the greater Boston area, we are looking forward to partnering with even more healthcare providers, growing our team, and expanding our service range so that we are able to help as many as we can.

wellist-we'd love to help