I am beginning to feel like that cartoon character “Where’s Waldo,” running at light speed from one conference to another in addition to my clinic and patient centered responsibilities.
Last week, I had the distinct honor of attending the International Association for the Study of Lung Cancer’s (IASLC) World Conference on Lung Cancer (WCLC) that was held in Vienna, Austria. It is the largest global conference on thoracic malignancies with over 6,000 attendees. As a session chair, committee member, and taskforce member, the organizers of this conference covered my flights and hotel.
As the executive director of the Mesothelioma Applied Research Foundation, fiscal responsibility is very important to me. We are a donation-based organization and we want to ensure that we are judicious in our allocations of funding.
I left for the conference on Thursday, December 1 and arrived midmorning the next day. I checked in at my hotel and had the pleasure of taking a quick tour around the city. I then met up with some colleagues for dinner, and we took the opportunity to discuss who would cover competing sessions, as there were many sessions focused on mesothelioma and other topics that translate across a variety of cancers. We wanted to be able to share and disseminate all information presented.
My real work began on Saturday when the nursing and allied health committee met in a working group format. We were charged with writing the guidelines for nurses in the care of patients receiving immunotherapy. As many of you are aware, cancer immunotherapy for the treatment of solid tumors, which has only been around for about 15 years, presents many significant side-effects that are not experienced with drugs typically used to treat cancer. When not properly managed, patients have died during the course of treatment or following discontinuation from treatment related complications.
The meeting brought together an expert group of nurses and allied health professionals diverse in terms of their practice and geographic location – Australia, Hong Kong, United Kingdom, Japan, and the United States were all represented. (Forgive me if I left out other represented countries). This project had been ongoing for months. We have now completed the first phase of the project and we look forward to continued collaboration. IASLC will brand these guidelines and they will be used to guide practice globally.
The working group met again during the week to further set the agenda for the coming year and to discuss ways to enhance the role of this committee within the organization at large. I am so pleased to report that IASLC has announced that they will be accepting nominations for a nurse to join this prestigious organization’s board of directors.
This is a critical role, as we need to bring the nursing perspective to all cancer conversations taking place globally. There will also be two seats open for advocacy, which was petitioned for by a very active advocacy committee. Melinda Kotzian, the Meso Foundation’s CEO, is a member of the advocacy committee in which she has played a very active role over the past few years.
I am also on the communications committee. My role during the conference was to proof read the daily conference newsletter, attend press conferences and proof materials coming out of these briefings. Leading up to the conference, we were charged with identifying news of greatest interest and impact, and timing their release.
This is just a small glimpse into the work of this committee that meets via teleconference frequently during the year. Social media is relatively new to this organization as a way to promote accurate reporting of news to both the general public and the scientific community. Many of the discussions were helpful as we continue to evaluate how we communicate with the mesothelioma community through our various efforts.
This past year, I have also been a member of the executive committee for the mesothelioma task force, which is a combined effort of the National Cancer Institute (NCI), IASLC and the Meso Foundation. On November 9-10, 2015, the International Conference on Mesothelioma was held at the University of Hawaii Cancer Center in Honolulu, HI. The meeting was co-sponsored by IASLC, and the agenda was designed with significant input from staff at the NCI and National Institute of Environmental Health Sciences (NIEHS).
The clinical session concluded with the consensus that due to the relative rarity of the disease, multidisciplinary international efforts are needed to conduct and complete randomized clinical trials with clinically meaningful endpoints.
NCI is currently working on a request for funding a mesothelioma trials planning meeting that has been endorsed by the NCI Thoracic Malignancy Steering committee. The meeting is planned for March 2017, and is a collaborative effort of NCI, IASLC, and the Mesothelioma Applied Research Foundation. International participation of the surgical, medical and radiation oncologists, environmentalists, and pathologists who are experts in the field is expected.
Expected outcomes of the meeting will be two or three trials that are feasible, statistically robust, and clinically meaningful in this rare disease that lacks randomized trials. Dr. Michele Carbone co-chairs this task force with the Meso Foundation’s board member Dr. Shreya Kanodia. It was a wonderful opportunity, not only to bring together the experts for a face to face meeting at IASLC, but also to have Dr. Kanodia present to the BOD of IASLC on the accomplishments of the task force and the future efforts planned in the coming year.
The next face-to face meeting will take place immediately following the Meso Foundation’s International Symposium on Malignant Mesothelioma in March. I anticipate that the Meso Foundation’s scientific session will lead to fruitful discussion and action items to be implemented by the task force and those charged with presenting at this meeting.
During the World Conference on Lung Cancer last week, I was able to discuss with many of my colleagues the advances taking place in mesothelioma and cancer in general, which we have reported in real time on our blog.
On a more personal note, the WCLC gala dinner was held at the Hofburg Palace. It was a beautiful setting and I sat with some of the giants in mesothelioma — the big names that move this disease in a forward direction. It just so happens that my husband presented a paper on Carcinoembryonic Antigen (CEA) in pleural fluid in 1984 in this very same location in the palace, so it was an extra special setting for me to find myself in, and I was excited to get back to Annapolis to compare notes with him.
I returned home on Thursday, December 8, and spent the weekend catching up before attending another important conference in McLean, Virginia (unfortunately the most highly trafficked corridor of the beltway). Mileage doesn’t reflect the two hours spent on the road both coming and going from Annapolis, Maryland, but truth be told, I would not have missed this for the world. The discussion that awaited me was completely different from anything I have ever been a part of in the past.
The meeting, “Metastatic Cancer Task Force Testimony and Operational Meeting,” was hosted by the Department of Defense (DOD) and took place over two days with 27 speakers all presenting highly sophisticated scientific viewpoints. We began each day at 7:30am and ended at 5:30pm.
Some background: the United States Congress, in the 2016 Defense Appropriations Bill, directed the DOD to develop a plan to accelerate clinical and translational metastasis cancer research. The Congressional Report specifies: “Metastatic Cancer Research – the committee continues to support the establishment of a task force to focus on research for metastasized cancer with a focus on clinical and translational research aimed at extending the lives of advanced state and recurrent patients.”
Assembled together were representatives from the armed forces, DOD, and highly esteemed researchers and clinicians. The discussions were focused on the unmet needs and what it might take to address highly complex scientific obstacles that have prevented major advances in the field of metastatic research. At the conclusion of the meeting, I was invited to submit comments to the committee on behalf of the Mesothelioma Applied Research Foundation that will be incorporated into the recommendations given to congress.
Discussions were at times heated with pioneers in the field of research referring to some of their grants as reimbursements rather than grant awards. It was stipulated over and over again how difficult the grant writing process has become, how expensive and laborious the preliminary data is to accumulate to apply for these grants, and how little time is awarded to achieve the goals of the grant. Animal models can take over 8 months to develop a site of metastasis. If you are awarded a two-year grant, that leaves little time for the experimentation process.
It was proposed that the grant process be simplified, time frames extended, and tenure and professorship requirements adjusted to reflect the growing need to share and collaborate in the earlier phases of research rather than compete to obtain first authorship, which is so important to academics. It was rather shocking to discover how little is known about this field. For example, how do organs protect their metastatic sites? How different is the environment of various tissues, which might be reflected in the mixed response observed during treatment? How do patients die from cancer (yes, this is really unknown) and what measures might be taken in the immediate post-operative time to prevent the development of metastasis?
It became readily apparent that these dedicated scientists were not in it for the money or glory, but for the right reason — to end the suffering. It was stated that everyone in the room was a cancer patient, as we all harbor abhorrent cells, and that in order to be successful, we need to be inclusive. Patients and survivors have much to contribute in all fields of cancer research and inquiry. I expect that cancer patients will have representation on all boards and committees. The Meso Foundation is grateful to Sandy Robb, who represents the patient population on our board of directors, and to those patients who have been peer reviewers for the committees funding mesothelioma research.
I am back at my desk now, catching up on calls and work in general. I must say having my new “side-kick” Gleneara Bates, MSW, our latest hire, has made my time away less stressful, as she was able to take my calls and provide assistance to the patients that called during my absence. We have collaborated on many projects over the years and she is both a friend and a trusted colleague. It is so nice to have her integrated into the Foundation.
Until next time,
Mary Hesdorffer, Nurse Practitioner
Executive Director, Mesothelioma Applied Research Foundation