Bill Ziegler on his Experience as a Survivor Advocate

Bill ZieglerIn June, mesothelioma warrior Bill Ziegler represented the mesothelioma community as a Survivor Advocate at the 7th Biennial Cancer Survivorship Research Conference: Advancing Survivorship Care through Multilevel Collaboration after being nominated by the Meso Foundation.  He was one of twenty survivors accepted out of 100 applications. Survivor Advocates attended the conference to participate in the conversation about the latest advances in survivorship care and how to improve the quality of life for cancer survivors. He wanted to share what he learned with the meso community:

Greetings Meso Community!

A little over a month ago I attended a survivorship conference in Atlanta.  It has taken me a while to formulate my thoughts on the overall experience and information I received during the conference.  There were over 500 people in attendance at the conference—20 of whom were survivor advocates.  The advocates represented different cancer support organizations across the US.  On the first day, there were sessions that placed survivor advocates at the tables of researchers.  Every 20 minutes you would switch tables and meet and learn something new.  Every researcher and advocate brought something uniquely different to the table.

I did attend a few breakout sessions.  The sessions I attended ranged from Adolescent and Young Adult (AYA) cancer survivorship to financial impact of a cancer diagnosis.  These were great sessions that provided a lot of relevant information on how much more money cancer patients will spend on healthcare over time to social stigma of a cancer diagnosis within a social group.  Without a doubt, there was a lot of information presented.  But the core reason I wanted to attend the conference was because of the specific nature of the challenges that a diagnosis of mesothelioma presents to patients.

I wanted to understand how, as patients, we can get the best treatment possible, and then continue to be followed over time from cancer care and then transition to primary care.  It was clear that this gap in care was the biggest elephant in the room—and identified repeatedly by a multitude of researchers.  For a lot of mesothelioma patients, as well as myself, this diagnosis of mesothelioma means that you will have to travel to a specific treatment center and have a plan tailored to your own personal needs.  Whether it is to have surgery, chemo, radiation, or trials, a plan is usually made at one of a handful of treatment centers across the US.  After treatment, which is usually hundreds of miles or hours away, patients are sent back home to recover and be followed once every few months back at the specialists office.  Any non-cancer treatment follow up will usually be done with your primary care physician—and it is rare that they have all of your records from your other healthcare providers unless you specifically provide them to your primary care physician.  It is this disconnect that so many of our community members have expressed concern with, as well as myself.

I often reflect on my own adventure and ask myself how I’ve been successful.  I’ve done well because I try to have a resource for everything.  It has become clear to me that patients who have the right resources win.  Whether it be a mental support resource, a doctor resource, a travel resource, or a cancer “best practice” resource, I can always find what I need.

Patient resource management is critical for their success.  At the conference, there was a clear trend towards “nurse navigators.” Nurse navigators help patients find health resources, and guide patients through treatment options.  Nurse navigators are popping up in health organizations across the country to assist patients and providers becoming more aligned.  It’s a good thing for survivorship, and while it’s something that is growing, not everyone has a navigator and there are still a lot of gaps in total care for cancer patients. I was proud to know that the Meso Foundation has been at the forefront of this trend for nearly a decade, providing medical consultations and support, and helping mesothelioma patients, through Mary Hesdorffer, Nurse Practitioner.

I’ve thought a lot about how each patient can manage resources effectively and be organized in keeping those resources and in the way they receive care.  I told this to another advocate and he showed me a portable handbook that he brought with him.  This handbook was standardized for patients, caregivers, and doctors.  It kept all vital information so resources could be available and easily shared.  I thought it was great, and extremely helpful!  I’m going to get a couple copies of the book because I think it would be beneficial for our patients to have.  It will provide a standard handbook for patient resource management.  So, I’m going to talk with Mary on how we can develop something that can be a “patient resource management tool.”

I am extremely happy that we, as mesothelioma patients, have a great cancer community facilitated by the Meso Foundation that allows us to connect and learn from one another.  It is a GREAT resource and wonderful tool!  By attending the conference, I have also learned that there are many different components of survivorship, and that it means something different to everyone.  I would also like to thank everyone in the community for allowing me to participate and be an advocate for our mesothelioma community—attending the conference was just more proof that we have some of the best people and resources available.

-Bill Ziegler

Read more about Bill on our blog.

Meet the Mesothelioma Experts: Stephen Isaacs Discusses New Clinical Trial Using Listeria Bacteria

Stephen IsaacsOn September 10, the Meso Foundation will interview Stephen Isaacs, the chairperson, president, and CEO of Adura BioTech, during a new installment of the Foundation’s Meet the Mesothelioma Experts live broadcast. The interview will be led by the Meso Foundation’s executive director and mesothelioma expert nurse practitioner, Mary Hesdorffer, APRN.

The focus of the interview will be Audo BioTech’s experimental therapy for malignant pleural mesothelioma, known as CRS-207. CRS-207 is a weakened form of Listeria bacteria modified to reduce its ability to cause infections, but still able to stimulate the immune system.

The interview will be available live on September 10, at 1PM EST, by calling into a conference-call number. The interview is free of charge, but listeners must RSVP ahead of time by visiting curemeso.org/experts in order to receive a call-in number.

In his position at Aduro BioTech, Mr. Isaacs initiated the company’s current immunotherapy program based on attenuated strains of Listeria monocytogenes. He was responsible for recruiting key members of the current vaccine team with deep expertise in the biology of Listeria. Mr. Isaacs has published over 20 peer-reviewed scientific articles and is an inventor on over 40 issued patents.

To RSVP for the upcoming session with Stephen Isaacs or to listen to past Meet the Mesothelioma Experts sessions, visit curemeso.org/exerpts.

Author of ‘We Need to Talk About Kevin’ Speaks Up About Deadly Cancer

Author Lionel Shriver pledges her support for Mesothelioma Awareness Day.The Meso Foundation recently released a video of award-winning author, Lionel Shriver, in which Ms. Shriver urges viewers to observe September 26th as Mesothelioma Awareness Day. The video can be watched on the Meso Foundation’s YouTube channel, or through the player below.

“Several years ago, one of my closest friends was diagnosed with mesothelioma,” says Ms. Shriver in the video. “Her experience of living with the disease, and ultimately dying from it, moved me to write my tenth novel, ‘So Much for That.’”

“So Much for That” is a fictional novel that tackles the complicated topic of healthcare in the United States through the experience of a mesothelioma patient and her family.

In the video, viewers are urged to visit the Meso Foundation’s website at curemeso.org to learn more about Mesothelioma Awareness Day.

Ms. Shriver is best known as the author of the award-winning novel “We Need to Talk About Kevin,” and “Big Brother.”

Mesothelioma Awareness Day is a grassroots movement established in 2004 by volunteers of the Meso Foundation with the goal of bringing more attention and funding to this historically-neglected cancer.

“On behalf of the mesothelioma community, I am infinitely grateful to Ms. Shriver for her help in raising awareness,” said Mary Hesdorffer, the nurse practitioner and executive director of the Meso Foundation.

“More awareness of this disease and the consequent increased funding for research, education, support, and advocacy is exactly what is needed to help us save lives,” added Ms. Hesdorffer.

View Lione Shriver’s video below, and learn more about Mesothelioma Awareness Day at curemeso.org/awarenessday.

October Events: Regional Conference on Mesothelioma in Chicago

Chicago brochure coverThe 2014 Chicago Regional Conference on Malignant Mesothelioma is a one-day event geared to patients and family members, covering a variety of topics related to mesothelioma and presented by local and regional area experts. The conference is a collaborative effort between the Mesothelioma Applied Research Foundation and The University of Chicago Medicine.

The conference is geared towards patients (newly diagnosed or those looking to learn about second-line and beyond treatment options), caregivers, family members, general health practitioners, and anyone wishing to learn more about mesothelioma. Topics of discussion include imaging, genetics, surgery, chemotherapy, novel treatments, stem cells, immunotherapy, and resources for patients and families.

The location of the conference is the Palmer House Hilton at 17 E Monroe Street, Chicago, IL 60603. The event will begin at 9:30am and commence with a cocktail reception at 5pm. The registration cost is $25, and includes breakfast and lunch.

More information and registration is available at curemeso.org/chicago.

The Meso Foundation is also the host of an annual symposium, taking place in March of every year in the Washington, DC area, and another regional conference in Philadelphia in September.

More Promising Mesothelioma Clinical Trials than Ever Before

Research continues to search for a cure as more mesothelioma clinical trials than ever before are underway.During the July 2014 board meeting of the Mesothelioma Applied Research Foundation, mesothelioma expert and executive director of the Meso Foundation, Mary Hesdorffer, APRN, stated that mesothelioma patients today have more promising clinical trials to choose from than ever before.

In her talk, she mentioned several trials that have been reporting increased survival and response rates. Some include novel radiation treatments, while the focus of others is within the field of immunotherapy. One trial, in particular, is looking very promising with a 69% durable response in a small group of patients. Ms. Hesdorffer stated that a new, larger trial currently underway is looking to confirm these results.

“A clinical trial is a unique opportunity for a patient to try something new and innovative that could have a very positive impact on the patient’s disease,” said Ms. Hesdorffer. “Having options is an important step forward in a disease that merely a decade ago was seen as hopeless,” she added.

Ms. Hesdorffer provides free consultations about clinical trials, as well as other issues pertaining to mesothelioma, as part of the Mesothelioma Applied Research Foundation’s patient services.

“While healthcare providers aren’t able to review all clinical trial options with their patients due to time constrains, at the Meso Foundation it is our job to spend the necessary time to go through all viable options while taking into consideration insurance coverage, stage of disease, histology and readiness to participate in a clinical trial,” added Ms. Hesdorffer.

Mary Hesdorffer, MS, APRN-BC, is a nurse practitioner with over 16 years of experience in mesothelioma treatment. She is an expert in mesothelioma clinical trials and her work has been published in a variety of scientific journals.

The Mesothelioma Applied Research Foundation has recently released a downloadable brochure about mesothelioma clinical trials, which can also be requested by mail, and lists all mesothelioma clinical trials on its website.