Mark Your Calendar for Upcoming Mesothelioma Conferences

2013 International Symposium on Malignant MesotheliomaThis 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

 

Meso Warrior, Rich Mosca, Featured on Everyday Health

Curemeso.orgLast week, mesothelioma survivor and mesothelioma community member, Rich Mosca, shared his powerful story of diagnosis and the beginning of his eight-year battle with meso on Everyday Health.

Mesothelioma is known to be very difficult to treat. But before treatment can even begin, a patient needs a diagnosis. In his contribution to the My Cancer Story section of the popular website, Rich details the long road it took to finally learn he has mesothelioma, and the unexpected relief of obtaining the diagnosis.

“Having no idea what was wrong, we had no idea what to do,” says Rich in his blog.

Rich’s story points out what is, perhaps, the disconnect in the world of mesothelioma – so many have heard about it from TV commercials, yet so few doctors actually think about it when patients present with certain symptoms.

To read Rich’s article, “Despite the TV Ads, Even Doctors Didn’t Know Much About My Cancer” in its entirety, please visit Everyday Health.

Update on the Deadliest Cancers Caucus

Deadliest Cancers Caucus briefingOn May 8, a Dear Colleague letter was sent out by the founding co-chairs of the newly established Congressional Caucus on the Deadliest Cancers to invite other Representatives to join the Caucus. According to the Dear Colleague letter, the Caucus was created “Because almost half of all cancer deaths in the U.S. are attributable to one of the deadliest cancers, it’s imperative that we monitor implementation and what, if any, additional steps Congress should take to address these most lethal cancers.” The caucus was founded by Representatives Leonard Lance (R-NJ), Anna Eshoo (D-CA), Dave Reichert(R-WA), and Henry Waxman (D-CA).

We asked meso advocates to contact their Representatives to ask them to join this important Caucus. There are now 20 members, which is a direct result of the advocacy efforts of the Meso Foundation and the other members of the Deadliest Cancers Coalition. Thank you to all of the mesothelioma advocates that took the time to contact their Representatives!

The Coalition also planned a June 19 briefing about the bipartisan Caucus, which was attended by more than 100 Congressional staffers. Meso Foundation Director of Government Affairs Jessica Barker attended the standing room only briefing.

Below, you will find a list of the current Caucus members. Don’t see your Representative on the list? It’s not too late! Visit our Action Center now to ask your Rep to join this important effort!

Current Members
Rep. Matt Salmon (AZ-5) – June 18, 2014
Rep. Anna Eshoo (CA-18) – May 2, 2014
Rep. Zoe Lofgren (CA-19) – June 19, 2014
Rep. Adam Schiff (CA-28) – June 18, 2014
Rep. Henry Waxman (CA-33) – May 2, 2014
Rep. Alan Lowenthal (CA-47) – June 23, 2014
Rep. Joe Courtney (CT-2) – June 19, 2014
Rep. Tom Latham (IA-3) – June 19, 2014
Rep. Joe Kennedy (MA-4) – June 19, 2014
Rep. Ann Wagner (MO-2) – June 19, 2014
Rep. Carol Shea-Porter (NH-1) – June 19, 2014
Rep. Leonard Lance (NJ-07) – May 2, 2014
Rep. Rush Holt (NJ-12) – June 19, 2014
Rep. Carolyn Maloney (NY-12) – June 18, 2014
Rep. Steve Stivers (OH-15) – June 19, 2014
Rep. Allyson Schwartz (PA-13) – June 19, 2014
Rep. Joseph Pitts (PA-16) – June 18, 2014
Sen. Sheldon Whitehouse (RI) – June 9, 2014
Rep. Michael Burgess (TX-26) – June 19, 2014
Rep. Dave Reichert (WA-08) – May 2, 2014

Learn more about the Meso Foundation’s advocacy efforts and how you can get involved at curemeso.org.

The Importance of Self-Care for Caregivers

Relaxing walkby Mary Hesdorffer, NP, Executive Director of the Meso Foundation

Mesothelioma caregivers are the unsung heroes in the war against meso. Those of us intimately involved in healthcare know that exam time with doctors is limited. Billing is based upon a construct of ideas and the caregiver does not fit into this for- profit medical system. As healthcare professionals, we see the caregivers in the exam room, often times struggling with emotional or physical problems, and perhaps we acknowledge their difficulties, but the focus remains on the needs of the patient. The caregiver is left to their own devices with little or no respite in the horizon during the continuum of the illness.

Knowing the difficulty of the role, I would like to encourage all caregivers to take advantage of the support services provided by the Meso Foundation. The Foundation provides several different options for caregivers to receive the help they need. They can participate in online or telephone support groups, or find individual support through the Foundation’s Meso Connect program. All services provided by the Meso Foundation, including those for caregivers, are very meso specific and include others who find themselves in the “trenches,” and who can empathize and share tips learned along the way.

For many complex reasons, caregivers, and society as a whole, tend to elevate the patient to a status of perfection, which can make it extremely difficult to maintain a healthy relationship. Caregivers assume their role most frequently because they love the patient, and they need to dig deeply to rekindle the intimacy that they enjoyed before the diagnosis. Intimacy involves sharing and caring. Real conversations need to take place, where caregivers can also express their fears, anger or disappointment regarding the disease and the changes it has brought to their lives. Caregivers also need to find the joys of daily living, as they are here in the present and should not lose these precious days wallowing in despair. A night out or watching a movie together with their loved one at home can do wonders to transport a caregiver from their daily struggles.

A caregiver needs care as well. Self-care means finding an activity that helps with relaxation and allows the ability to refocus on personal needs to renew and be able to provide the high intensity care that this disease demands. If money is tight, there are many activities that have little or no cost involved. I would suggest ways to take a break from current duties. A visit to a museum, sitting in a beautiful garden, yoga, tai chi or some other calming exercise can help soothe frayed nerves and encourage healing from within. It is ok to say no to unreasonable demands and to carve out some personal time. In order to provide care, caregivers must also be cared for – it is a two way street.

This disease is a lived experience by the caregiver as well as the patient. It is not unusual to feel sad and anxious during this time. Talk therapy and sometimes medication can be beneficial. It is not a reflection of any weakness when a caregiver requires a personal intervention. No one was born with an intact set of coping skills. These skills are developed along the way and they are often not sufficient to help during this time. A trained therapist can aid in exploring and strengthening coping skills and provide a safe place for a caregiver to share struggles and find ways to cope better in their role.

It can be especially rewarding for caregivers to step back a bit from the role and focus on why they are caring for the patient. Sometimes, it seems that caregivers are living a double life, perhaps as a spouse as well as a caregiver. They should avoid becoming too focused on the medical aspects of care, as this may result in distance from the emotional connection that is vital to the caregiver-patient relationship. It is important to take time to reflect, rest, and engage in activities that bring pleasure without guilt. Engaging with and accepting assistance from friends and family can ease the burden. When others offer to help, caregivers must think about what they need as well as the needs of their loved one. They should dedicate 30 minutes to an hour each day to self-care.

The Meso Foundation has a full staff as well as volunteers to help our caregivers. I personally am available to speak to you and assist you on this journey. You can also visit curemeso.org to view the caregiver resources available at the Meso Foundation.

Summary of Mesothelioma Studies Presented at ASCO

Microscopeby 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.