Monthly Archives: June 2014

1in7-infographic ZERO

Celebrating Men’s Health Month with a Dialogue About Prostate Cancer

This week’s guest blogger is Ivy Ahmed, Director of Patient Education for ZERO – The End of Prostate Cancer. ZERO’s mission is to end prostate cancer by advancing research, encouraging action, and providing education and support to men and their families.

At ZERO – The End of Prostate Cancer, our mission is to end prostate cancer. We lead the fight to end the disease by advancing research, encouraging action, and providing education and support to men and their families. As you can imagine, Men’s Health Month and Father’s Day is a very important time for us because we have an opportunity to celebrate all men and encourage families to have an open dialogue about the risks of prostate cancer and the options for treatment if a loved one is diagnosed.

As part of our Father’s Day #DoItForDad campaign, we released the findings of our education survey. Over a period of nine weeks, more than 1,400 people shared their prostate cancer experience with us through our survey. We’ve compiled the information and plan to use it to better develop patient education materials for men and their loved ones diagnosed with prostate cancer. Of those that responded, nearly 60 percent were men who had been diagnosed with prostate cancer, 24 percent were caregivers, and the remaining 17 percent were tied to the prostate cancer community. We asked many questions, from age to stage, treatments and side effects, and most importantly what information they wanted at the time of diagnosis and further down the line.

ZERO - The End of Prostate Cancer is a national nonprofit organization with the mission to end prostate cancer

ZERO – The End of Prostate Cancer is a national nonprofit organization with the mission to end prostate cancer.

Thank you to MyLifeLine for this opportunity to share a few of our key findings with you! Below are some of the highlights from our survey. The full report can be downloaded HERE.

  • Only 41 percent of men were referred to a medical oncologist at any point during their prostate cancer journey. It is critical to round out your team of health care professionals with an oncologist to get a full understanding of all available prostate cancer treatments and to give yourself the best chance to beat the disease.
  • When making treatment decisions, primary influences for patients/survivors included conducting their own research, listening to the doctor, and engaging a spouse/partner.
  • Fifty-four percent of patient/s survivors made their treatment choice to avoid certain side effects. They identified urinary incontinence, erectile dysfunction and loss of libido as the side effects they most wanted to avoid.
  • Nearly 80 percent of patients/survivors and caregivers received patient education information from their doctor. The patients/survivors found this information more useful than caregivers.
  • When looking for information about prostate cancer, one third of caregivers always sought out information geared toward patients.
  • More than half of caregivers said they felt additional stress as a result of prostate cancer.

Every year in June, to celebrate Father’s Day and Men’s Health Month, we host the ZERO Prostate Cancer Run/Walk – Capital Area. This year, we had more than 800 people come out to show their support for ending prostate cancer. We also created these Top 10 Tips for talking to your father or son about prostate cancer to encourage an open dialogue within families. To learn more about prostate cancer, risks, treatment, and ZERO, please visit our website at www.zerocancer.org.

 

MyLifeLine.org staff at their AACR booth

MyLifeLine attends American Association for Cancer Research (AACR) Conference

In April, MyLifeLine attended the American Association for Cancer Research Conference in San Diego. MyLifeLine was part of the Advocate Pavilion, which featured more than 20 nonprofit cancer organizations that were there to educate cancer researchers, advocates, survivors and each other about our missions to serve people affected by cancer.

During the meeting, MyLifeLine representatives had the honor and pleasure of speaking to the Scientist-Survivor Program, a group of cancer advocates and survivors, about the importance of social and emotional connection and how it can improve patient outcomes.

We were especially honored to be joined by Dr. Steven Rosen, provost & chief scientific officer at City of Hope and a member of the MyLifeLine Oncology Advisory Council. Dr. Rosen provided the medical perspective on the benefits of a support network for both patients and families.

It was a true privilege to attend the conference and to connect with other organizations that advocate for people facing a cancer diagnosis.

MyLifeLine.org staff at their AACR booth

MyLifeLine.org staff at their AACR booth

Derby

Jockeys, Juleps and Jazz 2014

MyLifeLine’s annual Jockeys, Juleps and Jazz fundraising event on May 3 was a tremendous success! Friends, members, sponsors and supporters came out in their festive Derby hats and attire to support MyLifeLine’s mission and raise vital funds to ensure that no one faces cancer alone.

More than 300 guests dined on a traditional menu of southern cuisine, sipped on signature mint juleps, listened to an energetic jazz band, bid on vibrant live and silent auctions, snapped pictures in a photo booth, and cheered on the running of the 140th Kentucky Derby. The event also was an opportunity to celebrate the mission of MyLifeLine and honor two awardees with the George Karl Courage and Visionary Awards.

Event emcee, Les Shapiro and MyLifeLine.org CEO Melissa Bowen

Event emcee, Les Shapiro and MyLifeLine.org CEO Melissa Bowen

Shortline Auto Group was awarded with the George Karl Visionary Award, accepted on behalf of owners Don and Laurie Hicks for their continued and generous support of MyLifeLine and all people affected by cancer. In 2013, MyLifeLine was honored to become part of a yearly philanthropic endeavor throughout Subaru’s Share the Love campaign, which raised more than $27,000 and helped sustain programs that support patients and families.

The George Karl Courage Award was presented to Fay Octavia Elliott, a three-time breast cancer survivor and MyLifeLine member. Her courage throughout her multiple cancer diagnoses, her unbreakable spirit and infectious outlook on life make her the model award recipient; she embodies the essence of MyLifeLine. Since her diagnoses, Fay has dedicated her life to helping others integrate body, mind and spirit, live life mindfully, reduce stress and regain control over their lives. MyLifeLine is honored to have Fay as a member.

The Jockeys, Juleps and Jazz event raised more than $240,000, allowing MyLifeLine to serve even more people affected by cancer and continue to develop innovative and supportive programs for members and guests. Thank you to everyone who attended, sponsored and donated their time and resources!

Sample New Member Update Page

A Major Move for MyLifeLine.org

This April, MyLifeLine.org Cancer Foundation launched a fully rebuilt website that was the result of months of work and preparation. Because technology has evolved significantly in the seven years since our organization began, it was necessary for us to make some major changes to the site. The Cold Fusion platform MyLifeLine was originally built on is no longer commonly used, so we rebuilt the site in PHP, a more common platform that will allow us to be more agile when creating new features.

This project was an especially large and delicate operation because moving from one platform to another was like moving to a new home in a new state. We weren’t only responsible for moving our own website content; we also moved all the data from each of our 118,000+ users. We had to pack up all the data, the pictures, the posts, the comments, the guest lists – basically everything that existed in the old site — and wrap and label it carefully, so that when we moved it all to our new home on the new platform, everything would be properly formatted, connected correctly and put in the right place.

As always, providing support for people with cancer and their communities is our top priority. Therefore, it was important to help our members and their website guests understand the platform change, including where to find familiar functions and how to use the new features. We’re pleased to report that during this time, the satisfaction rating of our customer support services stayed above industry standards at 89 percent.

MyLifeLine is very proud of our new site, which includes an updated design on patient sites, features such as the ability to like/support posts with a click of a button, a feed to make new helping calendar requests, photos and posts visible in a single place, and the ability for site owners to post video updates. Now that we are on the new platform, we’ll be able to roll out additional features more quickly and easily so MyLifeLine can continue to evolve and provide the best possible service to people affected by cancer.

Sample New Member Update Page

Sample New Member Update Page

Dave, Cancer Survivor

Dave’s Colon Cancer Story

Dave Williams is a colon cancer survivor who used MyLifeLine.org during his journey. Today he writes a guest blog post for us and shares his colon cancer story.

colon cancer story teller

Dave Williams, Colon Cancer Survivor

I shouldn’t have been so eager for an answer. A ward physician eventually popped his head through the door with news: I wasn’t infectious and could easily be rehydrated, but sadly, I had Stage III colon cancer. The doctor’s visit only lasted three minutes. I was left to my own thinking without details of my cancer diagnosis. I was on my own, very much on my own. It clearly was not the best way to embark upon my 15-month cancer journey that involved chemotherapy, radiation, multiple operations and many medical complications.
Letting go of control and “getting into the flow” was one of the main difficulties throughout my odyssey. My life philosophy of “if it’s going to be, it’s up to me” turned out to be quite inappropriate when it came to cancer. I needed to let the experts be in control, but I wasn’t ready and fought everything with anger, aggressiveness and hostility.
Becoming comfortable with the uncomfortable forced me to drop my personal armour, accept my vulnerability and acknowledge that my life would never be the same. The door to my old life was closed. I now needed to create a “new normal.”
My survival required a large team that consisted of medical specialists, healthcare professionals, my personal support group and my extended family of friends. Thankfully, I discovered MyLifeLine.org; it was an excellent way to communicate my needs with everyone.
MyLifeLine.org is not just a blogging tool and resource calendar to communicate with your support community. It truly is a “lifeline.” Whenever I wanted to reach out to my support group to share the emotional journey I was on, all I needed to do was access MyLifeLine.org. After I composed my messages, I found instant emotional relief.
I can honestly say that MyLifeLine.org was critical to my survival. It provided an excellent way for me to control the emotional roller coaster that I frequently experienced. It also became a positive, daily motivator since I knew I was developing an audience who wanted to hear how my journey was progressing and how I was coping. MyLifeLine.org allowed me to feel connected, to be useful, to be helpful, and to chart a path to the day where once again I would be well.
Today I am cancer free, but still dealing with minor complications. I am finally more well than sick and have found my “new normal” way of living. I can now give back by helping other cancer patients and caregivers. On a weekly basis, using a live video interview format, I plan to uncover personal “Secrets, Tips & Advice” that are used to overcome the stressful challenges of living with cancer. Throughout my experience, I longed to hear practical, street-wise guidance, so I will create a library of knowledge nuggets that can be shared with everyone to be used during their own colon cancer story. Please learn more at FindYourNewNormal.com