Message to Pharma: Large Trials in Mesothelioma are Possible

Dr. Lee Krugby Lee Krug, MD, Memorial Sloan Kettering Cancer Center

This week, a notification was sent to investigators on the DETERMINE Trial that accrual will be completed by the end of October. DETERMINE is an international, randomized trial comparing treatment with an immunotherapy drug called tremelimumab to treatment with placebo as second or third line therapy in patients with malignant mesothelioma. The trial opened in May, 2013, and in just 17 months will have enrolled 542 patients! This is a notable achievement. To put this in perspective, the last phase III of this magnitude testing vorinostat in a comparable group of patients (VANTAGE Trial) took 5 1/2 years to enroll 660 patients. There are differences between these two trials that could have accounted, in part, to the more rapid accrual. In DETERMINE, 2/3 of the patients receive the study drug, 1/3 get placebo, while in VANTAGE it was half and half. Also, immunotherapy drugs such as tremelimumab have garnered tremendous excitement in the oncology field due to their promising results in numerous cancers such as melanoma skin cancer and lung cancer. Yet, despite these differences, this accomplishment of completing a trial of this size in such a short period time should be a wake-up call to the pharmaceutical industry. Historically, drug companies have been reluctant to undertake large trials in mesothelioma due to concerns about feasibility and slow accrual. But this trial demonstrates the potential. Patients with mesothelioma urgently need better treatments, and with only one chemotherapy regimen approved, there is a tremendous opportunity to impact the outcomes for these patients. So here is the message to pharma: Large trials in mesothelioma are possible, and the community of patients with mesothelioma is eager to participate.

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. Read more about Dr. Krug’s work here.

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.

The Importance of Self-Care for Caregivers

Mesothelioma caregivers need to be mindful of taking care of both their loved one and themselves.by 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, mesothelioma 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, mesothelioma 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.

Meso Foundation Program Expenditures Increased to 86% of Budget

Fiscal ResponsibilityAn audit of the Meso Foundation’s 2013 financial statements confirmed an increase of program expenditures to 86% of the Foundation’s budget. Consequently, the amount spent on management and fundraising has decreased to 5% and 9%, respectively.

“We are very proud of this result. When compared to other excellent charities, we spend at least 11% more than they do on programs,” said Melinda Kotzian, the chief executive officer of the Meso Foundation. “Most importantly, this number shows our donors our dedication to the development of life-saving treatments and services for our mesothelioma-affected community.”

The Meso Foundation is the only mesothelioma-related charity to hold a 4-star rating by Charity Navigator and the only mesothelioma charity accredited by the Better Business Bureau.

The complete set of audited 2013 financials will be available on the Meso Foundation’s website in the “About Us” section under “990 Forms and Audits.”

Visit curemeso.org to learn more about the Meso Foundation’s impact.

Expanded Financial Assistance for Travel Expenses of Mesothelioma Patients

TravelLast week, we announced the expansion of our Travel Grant program for mesothelioma patients. The program, which was created initially to help mesothelioma patients who are in need travel to see a specialist for the initial consultation, will now also accept applications to cover traveling expenses of patients enrolled in clinical trials away from home, or those seeking new consultation following relapse. Each grant of up to $1,000 can cover lodging, transportation, and meals.

Mesothelioma treatment requires the expertise of a specialist who has extensive mesothelioma experience. Such experts are available at a limited number of centers, access to which often requires the patient to travel. Mesothelioma patients can greatly benefit from consulting with an expert. In many cases, following the initial consultation, the mesothelioma expert will be able to work with the patient’s local physician to guide them through a more specialized treatment.

“The Meso Foundation believes that every patient should have the chance to be seen by an appropriate mesothelioma expert, regardless of their ability to pay,” said Mary Hesdorffer, the executive director of the Meso Foundation and an expert nurse practitioner.

To qualify for the grant, a patient must show significant financial need and fit in one of the following categories:

  • Patients who must travel to receive expert care or an expert consult on their mesothelioma, and cannot afford to do so without assistance. Repeat visits are not covered unless patients are enrolled in a clinical trial.
  • Following treatment by a specialist, the patient has relapsed and needs to explore a new option of treatment or clinical trial.
  • The patient has enrolled in a clinical trial and does not have the financial means to travel to appointments. We recognize that clinical trial participation requires multiple visits and will consider each visit as a new application.

More information about the Travel Grant program can be obtained by contacting the Meso Foundation at (877)636-6376 ext. 3821 or by emailing Dana Purcell at dpurcell@curemeso.org.

Visit curemeso.org for more information about mesothelioma.