The Holiday Table

by Mary Hesdorffer, Nurse Practitioner
Executive Director, Mesothelioma Applied Research Foundation

Holiday table place settingThe holidays are approaching, and the dreaded holiday feasts begin. The mesothelioma patient who is undergoing chemo, or perhaps has not regained their appetite, can be very uncomfortable sitting at a table laden with holiday goodies and an expectation that they will dive in with relish.

So what tips can we provide for those of you preparing the meal? If you are fortunate enough to have a full set of china, pull out those 7-8 inch luncheon plates and set the table. If not, thrift shops have a ton of mismatched sets that you can put together to create a unique holiday-scape. Placing a scant amount of food on a smaller dish gives the appearance of a well laden plate, thus making the patient‘s lack of appetite less apparent to others at the table. If you are pouring a holiday cocktail, move to sherry glasses. Your guests can refill, and the patient again can enjoy some holiday indulgence (check in with the medical staff or pharmacist for possible medication interactions with alcohol). Most cancer patients can enjoy a glass of wine, which can help in terms of relaxation and appetite stimulation.

If you have been stretched to the limit with your caregiving activities and are hosting the holidays, not only enlist your guests to prepare an entrée or appetizer, but consider catering some or part of the meal. This is a time to enjoy your family and friends, and to do so means that you have to ease some of the burden that you carry. Perhaps you are like me – someone who truly takes pleasure in the whole process of cooking, planning and executing the meals. If so, then you may require some respite care with your caregiving duties. This is a perfect time to call upon friends or family members to assist. You can consider hiring someone to help around the house in whatever capacity you need. A patient in this role can ask friends and family that they work well with to be their “kitchen assistants” and do more of the directing and tasting of the courses to be served.

Often, we get so caught up in the gifting and the appearances of the perfect holiday that we forget the true spirit of it. How simple would it be to request that, in lieu of gifts this year, you would like to plan an evening out with close friends and family?

This is your holiday to plan and enjoy – savor all the joy of the season.

Update from the ED: My time at UPenn and the Fox Chase Cancer Center

by Mary Hesdorffer, Nurse Practitioner
Executive Director, Mesothelioma Applied Research Foundation

Mary HesdorfferI received an invitation to attend the first ever community lung cancer day at Fox Chase Cancer Center in Philadelphia, Pennsylvania. Though the focus was on lung cancer, I was given the opportunity to have a table where I could promote the work of the Foundation as well as mingle with the community. I did not meet any mesothelioma patients, but I did speak with two individuals who lost parents to mesothelioma, and they thanked me for our work.

I was also able to meet the lung team, one of whom trained with Dr. David Sugarbaker (small world indeed). The thoracic nurse navigators were very interested in our work and agreed to provide their patients with our brochures, as did the respiratory therapists. We have awarded a number of grants to the researchers at Fox Chase Cancer Center, and Dr. Joe Testa, a past recipient, was given our pioneer award last year.

This event followed a very successful one day mesothelioma conference at UPenn.  Melissa Culligan took on the main responsibility of organizing the conference and did a superb job. Don’t be fooled by the sweet and quiet disposition of Melissa, as underneath is a stern taskmaster keeping the docs on their toes. She is the heart of the UPenn program. Dr. Joe Friedberg assigned the topics for our presentations and kept the momentum going with his usual god humored quips. I was given the presentation title “the unmet needs of the mesothelioma patient.” As promised, I brought your voices to the presentation, and attendees were moved by your stories and our pleas for new drug therapies, better opportunities to participate in clinical trials, as well as more supportive care services.

Dr. Lee Krug, who will be accepting the role of BOD chair in January also presented, and I was so pleased knowing that this well-respected medical oncologist will be leading us to fulfill our mission. Dr. Raffit Hassan, former SAB chair caused quite a stir with his report on the progress he is making with his trial of SS1P. I received some exciting news from Dr. Steve Albelda, a member of our SAB; He will be taking a sabbatical in Hawaii for 3 months to collaborate with Dr. Michele Carbone. It is very nice to see these relationships building and the sharing of resources and data.

As is usual at UPenn, their energy and enthusiasm for treating mesothelioma is heartwarming, and I left knowing that they will continue to build and expand upon the terrific services that they already offer to mesothelioma patients. Dr. Friedberg trained a young surgeon from Taiwan, and he flew in to be part of the conference as did Dr. Paul Bass from the Netherlands. I was proud to be among those who presented, and I will be updating you on the science sessions at both this conference and the conference in Sydney. It is obvious to me that we are seeing the fruits of our labors with more trials having a targeted approach based upon much of the science that we have funded.

Recalcitrant Cancer Act: How this law can facilitate progress in mesothelioma research

ResearcherThe Recalcitrant Cancer Research Act of 2012 was signed into law by President Obama on January 2, 2013 as part of the National Defense Authorization Act (Public Law No. 112-239)1, giving the Director of the National Cancer Institute (NCI) the ability to identify recalcitrant cancers for which to establish scientific frameworks that will guide research efforts.

For each recalcitrant cancer, NCI is to convene a working group of both Federal and non-Federal individuals to provide expertise and assistance in developing the scientific framework. The frameworks are to be completed within 18 months of enactment, then submitted to Congress and made publicly available on the HHS website within 30 days. The bill requires the progress of each scientific framework be reported in the National Institutes of Health (NIH) Biennial Report, with an assessment of progress made in improving outcomes for recalcitrant cancers. The bill further states that the NCI Director “shall consider” each relevant scientific framework when making recommendations for exception funding for grant applications.2

In this legislation, a recalcitrant cancer is defined as a cancer “for which the five-year relative survival rate is below 50 percent.” Unfortunately, mesothelioma meets this definition, with only a five to ten percent five-year survival rate.  The legislation also seeks to target cancers that have “not seen substantial progress in the diagnosis or treatment.” Unfortunately, mesothelioma fits this stipulation as well. With only one FDA-approved treatment, many patients have to resort to off label use of chemotherapies, drastic surgery or with luck participation in clinical trials. There is also no test currently available for early detection of mesothelioma.

Substantial progress in mesothelioma has been made, and a scientific framework would help to further the advancement of mesothelioma research.  A gene that is linked to mesothelioma has been identified, and the NCI has recently announced patients responded well to treatment in their SS1P clinical trial. The Meso Foundation has already sent a letter to Dr. Harold Varmus, the Director of the NCI, urging him to designate mesothelioma as a recalcitrant cancer, and we will continue our advocacy efforts. Stay tuned for updates on our progress.

Sign up for the Mesothelioma Ambassador Program to join us in advocating that mesothelioma be designated as a recalcitrant cancer for a scientific framework.

To view the text of the bill, visit Thomas.gov and choose the advanced search option, then search HR 733.

Read more about the progress of the SS1P trial.

Learn more about the BAP1 gene in our blog post, “Genetics and the BAP1 Gene in Mesothelioma.”


Footnotes

1. www.thomas.gov, accessed November 20, 2013
2. http://legislative.cancer.gov, accessed November 20, 2013

The FACT Act Statement

fact_act_voteOver the last few months, there has been a great deal of discussion about the Furthering Asbestos Claim Transparency Act (H.R. 982) also known as the FACT Act. The FACT Act just passed the House of Representatives by a vote of 221-199.  The bill requires the existing asbestos trusts to file quarterly reports on the claims they have received.

The Mesothelioma Applied Research Foundation, after difficult consideration, has chosen not to take an official stand on the FACT Act. Mary Hesdorffer, the executive director of the Foundation, and Melinda Kotzian, its chief executive officer, consulted the Foundation’s board of directors and its major supporters, and uniformly decided that the FACT Act falls outside of the mission of the Meso Foundation.

“We are a research foundation focused on developing effective treatments and a cure for mesothelioma,” stated Ms. Kotzian, “Taking a stand on legal issues falls outside our scope of work and outside of our expertise.” As it reads in our policy on litigation:

Our primary function is to support the health needs of the patient. Involvement in tort and litigation issues does not fall into this category, nor is it our area of expertise. For this reason, it is our position that we will abstain from commenting on or supporting legislation that does not directly address the health needs of mesothelioma patients and their loved ones. 

Read the full text of the Mesothelioma Applied Research Foundation’s policy on litigation.

View the text of the bill, search HR 982 on Thomas: www.thomas.gov

See who voted / didn’t vote for the FACT Act: http://clerk.house.gov/evs/2013/roll579.xml

Saluting Our Veterans!

flags_veterans2_smallThank You, Veterans!

On this Veterans Day, the Meso Foundation would like to extend a heartfelt “thank you” to all those who have generously and selflessly served this country in our various branches of the military. We appreciate and admire your service!

At the Meso Foundation, our work on behalf of veterans affected by mesothelioma today, and those who will develop mesothelioma in the future, spans throughout the year. We work to ensure that mesothelioma, a cancer prevalent among veterans, is not ignored by our country’s elected officials and our government.

In fact, as a direct result of continued advocacy by the Mesothelioma Applied Research Foundation, the Department of Defense has funded a total of $8.8 million in mesothelioma research since 2008. We are currently looking to expand this program to include a category dedicated exclusively to mesothelioma, so that meso researchers would no longer need to compete against other diseases for funding.

Beyond our advocacy for research dollars and our own research funding to which we’ve invested over $8.2 million, the Meso Foundation is dedicated to helping mesothelioma patients, including our service men and women, by providing them with support services and education they need to fight this cancer. We understand that veterans may have specific needs, therefore, on our website, we have compiled important information and resources specific to this group.

Military veterans, along with other occupations leading to asbestos exposures, are at a high risk for developing mesothelioma. A 2002 study of asbestos exposures that led to mesothelioma found that a large number of total mesothelioma cases, approximately 1/3, were caused by either service in the Navy or occupations within the shipbuilding industry. Over 1 in 10 mesothelioma patients are Navy veterans.