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.

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.

September Events: Regional Conference on Mesothelioma in Philadelphia

The Meso Foundation and Penn’s Abramson Cancer Center will hold a mesothelioma conference on September 26.A mesothelioma conference presented by the Mesothelioma Applied Research Foundation and Penn’s Abramson Cancer Center, will be held in Philadelphia on September 26, 2014. The conference will bring together area experts in the field of mesothelioma. September 26 marks the National Mesothelioma Awareness Day.

The conference is open to the public, and specifically aimed at mesothelioma patients, family members, caregivers, healthcare professionals, and those who have been exposed to asbestos.

The conference will take place on Friday, September 26, 2014 at The HUB, Cira Centre at the Penn’s Abramson Cancer Center, located at 2929 Arch Street, Philadelphia, PA 19104. To register for the conference, visit OncoLink.org/Conference/Mesothelioma or call 800.789.PENN (7366) and press 2.

The conference is co-chaired by Mary Hesdorffer, CRNP, of the Meso Foundation, Joseph Friedberg, MD, of the Penn’s Abramson Cancer Center, and Daniel Sterman, MD, of the Penn’s Abramson Cancer Center. Among topics of discussion at the conference will be clinical trial participation, latest advances in peritoneal and pleural mesothelioma, palliative care, early detection, genetics, coping with mesothelioma, and survivorship.

Speakers include:
Mary Hesdorffer, CRNP, Mesothelioma Applied Research Foundation
Joseph Friedberg, MD, Penn’s Abramson Cancer Center
Chi Dang, MD, PhD, Penn’s Abramson Cancer Center
Julie Brahmer, MD, Johns Hopkins University
Richard Alexander, MD, University of Maryland
Lee Krug, MD, Memorial Sloan Kettering Cancer Center
Andreas Rimner, MD, Memorial Sloan Kettering Cancer Center
Daniel Sterman, MD, Penn’s Abramson Cancer Center
Suzanne Walker, CRNP, MSN, AOCN, BC, Penn’s Abramson Cancer Center
Anil Vachani, MD, Penn’s Abramson Cancer Center
Joseph Testa, PhD, Fox Chase Cancer Center
Eleanor Anderson, MD, Penn’s Abramson Cancer Center

For more information, visit curemeso.org.

Mark Your Calendar for Upcoming Mesothelioma Conferences

Two regional mesothelioma conferences are coming this fall to the University of Pennsylvania and the University of Chicago.This year, the Meso Foundation will be host to two regional conferences. The first will be held on Friday, September 26 at the University of Pennsylvania in Philadelphia, Pennsylvania. The second will be held on Friday, October 10 at the University of Chicago in Illinois. Each conference will feature regional experts in the field of mesothelioma. Check back to curemeso.org for further information as it becomes available or sign up for our e-news to ensure you are notified as conference details are released.

September 26, 2014
University of Pennsylvania
The Hub, Cira Centre
2929 Arch Street
Philadelphia, PA 19104

October 10, 2014
University of Chicago
Palmer House Hilton
17 E Monroe Street
Chicago, IL 60603

Annual Conference
The Meso Foundation’s annual conference, the International Symposium on Malignant Mesothelioma, along with the Scientific Seminar, will be held from Monday, March 2 through Wednesday, March 4, 2015 in partnership with the National Cancer Institute in Bethesda, Maryland. Events will be held at the National Institutes of Health Natcher Conference Center and the Hyatt Regency Bethesda. Symposium registration will open on October, 13, so mark your calendars now! Visit curemeso.org/symposium for more information as it becomes available or sign up for our e-news to be notified about Symposium details.

International Symposium
on Malignant Mesothelioma
March 2- 4, 2015
National Institutes of Health
Natcher Conference Center (Building 45)
Bethesda, MD
Hyatt Regency Bethesda
7400 Wisconsin Ave
Bethesda, MD 20814

Scientific Seminar
March 2-3, 2015
National Institutes of Health
Natcher Conference Center (Building 45)
Bethesda, MD

 

Summary of Mesothelioma Studies Presented at ASCO

Lee M. Krug, MD shares his annual summary of the mesothelioma research presented at the American Society of Clinical Oncology (ASCO) meeting.by Lee M. Krug, MD, Memorial Sloan Kettering Cancer Center

The American Society of Clinical Oncology meeting was held from May 30 – June 3, 2014 in Chicago. This is the largest oncology meeting each year with around 30,000 attendees from all over the globe who congregate to discuss the latest research in all cancer types. I will provide you with my annual summary of the most prominent studies in mesothelioma.

Randomized trial of arginine deprivation with ADI-PEG20: This abstract was presented by Dr. Szlosarek from the United Kingdom. Arginine is an amino acid that normal cells make using an enzyme called ASS (time to make the joke here!). However, many cancer cells lack the ASS enzyme so they cannot make arginine and they need to get it from outside the cell. ADI-PEG20 starves the cancer cells of arginine. In this trial, patients with mesothelioma were randomized to receive treatment with ADI-PEG20 or just supportive care. In order to qualify, the tumor samples were tested to make sure they had low levels of ASS. Side effects were very mild with this treatment. About half of the patients had stabilization of their disease. The time for cancer growth to occur was longer in the ADI-PEG20 arm, but only by a small margin (1.9 versus 3.2 months). A future study will combine ADI-PEG20 with chemotherapy, and that trial should open later this year.

Phase 2 study with tremelimumab: Probably the hottest drugs in oncology right now are the antibodies that boost the immune system. These types of treatment have shown great benefit in melanoma, lung cancer, and many others. Tremelimumab is one of these drugs, and this trial, conducted in Italy by Dr. Calabro and colleagues, showed that mesothelioma also responds to these therapies. Of the 29 patients, 14% of patients had shrinkage of their mesothelioma and 38% had stabilization. These data support the international, randomized trial with tremelimumab that is currently ongoing that will include 542 patients. If this large trial shows that tremelimumab improves survival, this drug will get FDA approval for mesothelioma.

Anti-mesothelin vaccine CRS-207 plus chemotherapy: Dr. Hassan from the National Cancer Institute reported these results. Mesothelin is a protein on the surface of mesothelioma tumors, and seems to be an excellent target for treatment. CRS-207 is a vaccine that increases the immune response against mesothelin. In this study, CRS-207 was given with pemetrexed and cisplatin. Nearly 70% of patients had shrinkage of their cancer, much more than usual with chemotherapy alone, and the responses seemed to last longer. These results should encourage a larger future randomized study.

Next-generation sequencing in mesothelioma: The report from Dr. Scagliotti at the University of Turin, Italy, described his findings from an analysis of gene mutations in a group of mesothelioma tumor samples. This type of testing has become critical for identifying potential targets in all cancers, and customizing treatment for each patient.


Lee M. Krug, MD, is an Associate Attending Physician in the Division of Thoracic Oncology, Department of Medicine at Memorial Sloan-Kettering Cancer Center in New York, New York, where he completed a fellowship and chief fellowship in medical oncology. Dr. Krug is the Director of the Mesothelioma Program at Memorial Sloan-Kettering Cancer Center. He is also the chair of the board of directors of the Meso Foundation.