Wednesday Update from iMig Conference

Mary Hesdorffer, NP, the executive director of the Meso Foundation is in attendance at the International Mesothelioma Interest Group (iMig) conference in Cape Town, South Africa. Mary has sent the following photo updates from Wednesday at the conference.

Cocktail Reception

The entertainment at the cocktail reception.

Dario Barbone, PhD

Dario Barbone, PhD, shared that he will be submitting a grant for consideration to the NCI next week. He credits the Meso Foundation’s grant for providing the funding that permitted him to carry out experiments from which the resulting data can be used in applying for larger grants. We will continue to update you on the careers of these young scientists who are the future of mesothelioma research.

Joe Friedberg and Melissa Culligan

Joe Friedberg, MD, and Melissa Culligan, BSN, RN, are in attendance.

Melissa Culligan

Melissa Culligan, BSN, RN, was the only nurse invited to present in the surgical session. Congratulations for a thoughtful presentation.

David Schrump, MD

David Schrump, MD, head of the Thoracic and Gastrointestinal Oncology Branch at the National Cancer Institute, seen during the poster discussion session.

Mary Hesdorffer to Present at iMig Conference This Week

Mary Speaking at 2013 SymposiumMary Hesdorffer, MS, APRN-BC, the executive director of the Meso Foundation, will be presenting at the 12th International Mesothelioma Interest Group (iMig) Conference in Cape Town, South Africa this week. iMig is an international group of scientists and clinicians working to understand, cure, and prevent mesothelioma. iMig presents an important conference that brings together mesothelioma professionals from around the world to discuss the current state of research and advancements in the field.

Mary is chairing a nursing panel and she will give two presentations at the conference. The first presentation, titled “The Voice of the Meso Community in the United States,” will discuss how the Meso Foundation, with the help of community members, advocated for $9.3 million in federal research funding directed to mesothelioma research since 2008. Mary’s second presentation is title “Promoting Entry into Clinical Trials and Improving Access to Specialist Treatment and Care.”

Mary is a nurse practitioner with over 16 years of experience in mesothelioma treatment. She is an expert in clinical trials for mesothelioma and her work has been published in a variety of scientific journals. Mary serves as the executive director of the Mesothelioma Applied Research Foundation.

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.

Focus on Mesothelioma in Pharmaceutical Company Investor Meeting

Mary at Verastem, Inc.On July 10, during the research and development portion of the Verastem, Inc.’s investor meeting, Mary Hesdorffer, APRN, the executive director of the Mesothelioma Applied Research Foundation, was a featured speaker. In her talk, Ms. Hesdorffer focused on the need for clinical trials to increase the number of viable therapeutic options for mesothelioma.

According to their website, Verastem, Inc. is a “clinical-stage biopharmaceutical company focused on discovering and developing drugs to treat cancer by the targeted killing of cancer stem cells. Cancer stem cells are an underlying cause of tumor recurrence and metastasis.”

“When we look at the mesothelioma patient, we have one regimen, pemetrexed and cisplatin, approved in 2003,” said Ms. Hesdorffer. “40% of the patients were found to respond to the treatment, but unfortunately, it’s not a durable response,” she added.

Ms. Hesdorffer continued her speech by focusing on the need to do more for mesothelioma patients to increase time to relapse or even to delay relapse indefinitely. She argues that keeping patients healthier for longer periods of time, improving their quality of life, and keeping them in good shape, positions them as good candidates for major breakthroughs that might develop in the future.

Mary Hesdorffer, MS, APRN-BC, is an expert nurse practitioner with over 16 years of experience in mesothelioma treatment. She is an expert in clinical trials for mesothelioma and her work has been published in a variety of scientific journals. She has spoken about mesothelioma, clinical trials, and the dire need for life-saving mesothelioma treatments to the US Congress and the UK Parliament, as well as many seminars and conferences, including the World Conference on Lung Cancer, where in 2015 she will be the program chair of the Nursing and Allied Health section.

For more information on mesothelioma clinical trials, and to download the Meso Foundation’s free clinical trials booklet, visit curemeso.org.

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.