Symposium Videos, Photos Now Available!

Videos and photos from the 2014 International Symposium on Malignant Mesothelioma.”

In early March, the Meso Foundation held its 11th International Symposium on Malignant Mesothelioma in Alexandria, Virginia. We welcomed attendees from all over the world, including patients, caregivers, doctors, researchers, and so many others. The event was a huge success.

WEDNESDAY
Wednesday morning began as attendees gathered for breakfast before heading off to Capitol Hill for Advocacy Day. This is the time when the entire meso community welcomes the opportunity to educate our law-makers about mesothelioma and the need for mesothelioma research funding. This video gives a brief overview of the day.

Wednesday night concluded with a Welcome Reception for all attendees. The reception began with a keynote speech from Dr. Dean Fennel and then moved on to a night of passed hors d’oeurve, drinks, and socializing with the community. This was the first of many chances for attendees to mingle with old friends and make new ones. Take a look at some photos from the event!

THURSDAY
Thursday morning began with a Celebration of Life ceremony, which culminated in a release of doves over the pond outside the hotel. The theme of the ceremony was hope, compassion, and community.

Celebration of Life ceremony at the mesothelioma symposium.

Doves were released during the Celebration of Life at the Symposium

The Foundation’s executive director, Mary Hesdorffer, NP, kicked off the day of sessions with a welcome speech in which she introduced the Meso Foundation’s staff, Board of Directors, and Science Advisory Board. We then heard from two keynote speakers: Dr. Ira Pastan, Head of the Molecular Biology Section of the National Cancer Institute, followed by Dr. Raffit Hassan.

The annual mesothelioma symposium brings together mesothelioma patients and caregivers.

Every year, the community loves to get together at the Symposium. They find time to socialize even with a tight agenda!

Thursday continued with informative scientific and community sessions, started by Dr. Faris Farassati who discussed cancer stem cells. Mary was then joined by Dr. Marc DePerrot, Dr. Dan Miller, and Dr. James Pingpank to discuss post-surgical recovery. Dr. Tobias Peikert and Dr. Dan Sterman covered the topic of pulmonary health. In nonmedical sessions, Olga Pavlick led a newly bereaved discussion group, while Jessica Barker was joined by Rich Mosca and Hanne Mintz to discuss the importance of getting a proclamation in your area to officially declare September 26th as Mesothelioma Awareness Day. Miriam Ratner, Rev. Eric Linthicum, and Dana Purcell held a panel discussing the healing arts. Other topics of the day included exercise and nutrition, novel therapeutics, radiation oncology, chemotherapy, and early detection.

Thursday night concluded with an Awards Dinner. The dinner was MCed by Dr. Joseph Friedberg and Dr. Dan Sterman of the University of Pennsylvania, who did a great job keeping the atmosphere light-hearted and fun. We hope they never quit their day jobs, but surely they could also make a career in comedy!

Congresswoman Pingree with her constituent Lisa Gonneville and Mary Hesdorffer, NP  at the 2014 International Symposium on Malignant Mesothelioma.

Congresswoman Pingree (center) with her constituent Lisa Gonneville (right) and Mary Hesdorffer, NP (left)

We were honored to have Congresswoman Chellie Pingree in attendance to accept the Bruce Vento Hope Builder Award, and she gave a powerful speech about her dedication to our cause and the need for mesothelioma research funding.

AWARDS
Rev. Eric Linthicum was presented the Compassion Award for his caring nature and dedication to the Foundation’s community. Dr. Michele Carbone received the Pioneer Award for his advancements in mesothelioma research. The Klaus Brauch Volunteer of the Year Award was presented to Olga Pavlick and Sarah Pavlick for their incredible efforts in organizing fundraising events and volunteering with the Meso Foundation. Anne Alessandrini received the June Breit and Jocelyn Farrar Outstanding Nurse Award for her passionate work in the Thoracic ICU at Brigham and Women’s Hospital. Jocelyn Farrar’s daughter presented the award to Anne. We also had a surprise award, the Philanthropy Award, which we presented to Don Bendix for his financial dedication to the Meso Foundation and mesothelioma research funding.

FRIDAY
Friday morning, the community was up bright and early for another day of sessions. The day began with a translation of the Scientific Seminar from Dr. H. Richard Alexander. He was then joined by Dr. Lee Krug to discuss the current state of mesothelioma research. Friday was not all about science, however, as we also held sessions such as yoga, walking for health, and art therapy. Following a brief update on the state of the Meso Foundation, Melinda Kotzian moderated a panel about getting involved and how you can help the Foundation. We heard from Maja Belamaric, Dana Purcell, Bonnie Anderson, Erica Ruble, Marina Mintz, and Rich Mosca on the many, many ways to get involved – from simply telling your story to events and advocacy. Other sessions of the day included a legislative update with Jessica Barker, a session with the American Legion, a talk on the empowered patient from Mary Hesdorffer, a session on chemo brain, a session on how to host a fundraising event as well as a fundraising panel, and more.

The 2014 mesothelioma symposium included a performance by the Meso Fighters band.

The Meso Fighters Band took the stage at the Community Dinner

Friday night served as a celebration wrapping up another successful Symposium. The Community Dinner was more like a community party than anything else. After an excellent buffet, attendees were surprised with a choreographed dance from Melinda Kotzian and Mary Hesdorffer (don’t worry – we have a video!). Following suit, much of the community took to the dance floor as the Meso Fighters Band took the stage. The Meso Fighters Band, which is made up of patients, doctors, and bereaved, played multiple sets featuring a playlist that mixed rock and pop. We heard everything from Janis Joplin to Katy Perry, and it was all fantastic. We ended the Meso Foundation’s 11th International Symposium on Malignant Mesothelioma with a celebration of our incredible community.

TAKE A LOOK
We have released videos of many sessions and speeches from the event. Watch the videos on our YouTube channel.

You can also check out some photos from the Symposium!

GUEST BLOG: Cam Deaver and his Happy Voices

Cam Deaverby Cam Deaver

Shortly after my HIPEC surgery, I started hearing voices. Talking, laughing, sometimes crying. But mostly happy. Now I hear them every day. And I often have visions of faces, too.

I’ve never talked with anyone about this phenomenon because it doesn’t upset me. And I don’t think doctors could do anything about it anyway. Really, I don’t want it to change ever, because it has given me tremendous comfort and strength as a mesothelioma survivor.

The phenomenon began when I went to the Meso Foundation’s Symposium last year. That’s where I first heard the voices and saw the faces and felt the hugs of survivors, families, and doctors who knew what I was going through.

I had exchanged messages online with many of them before, and I had even talked to a few of them on the phone, but nothing prepared me for the experience of meeting in person at the Symposium.

I was just a couple months into my recovery at the time, and I felt like I had turned the corner. I was happy with my circumstances and thought I had an abundance of positive energy to share.

My wife and I expected the Symposium to be a somber affair—three days immersed in the gloom of illness and fear and desperation. We promised each other we’d do everything possible to spread cheer and give others a lift.

But we never had the chance. From the moment we arrived, we were caught in a wave of friendship, concern, and hope that never let go.

Don’t misunderstand—there were certainly many serious discussions and some sad moments. But more than we could have imagined, we saw encouragement beat back worry, knowledge overcome fear, gratitude conquer grief, and smiles shine brighter than tears.

Those are the voices and faces that come around every day now.

When I’m concerned about my future health, I hear Dr. Carbone’s exuberant Italian accent (and see his waves of luxuriant Italian hair!), Dr. Pingpank’s calm confidence, or Dr. Alexander’s deep concern, and I know that there are scores of doctors and researchers working to help me.

When I’m confused about test results, treatments, or what steps to take next, Mary is there offering insight, wisdom, and encouragement and keeping me grounded and focused on getting healthier.

I see Melinda, Maja, Erica, Erin, Jessica, Anna, Dana, and Beth raising money, funding research, advocating, organizing, speaking, writing, and reaching out to support me.

I see Hanne, Marina, Shelly, Don, Betty and others who have lost loved ones but continue to work ceaselessly for those of us still fighting. I see a husband and son play their hearts out in the Meso Fighters Band, just weeks after losing their wife and mother.

I see a few people who have since passed away, like Janelle. I met her only once, toward the end of her fight, but I still remember the way her eyes and smile and determination sparked hope in everyone around her.

I hear and see all the beautiful souls who will not let mesothelioma win; those who joyfully count the days, weeks, months, and years of life and love that cancer can never steal. They are quick with a message or a call when I’m having a down day. They give practical advice about dealing with cancer and share infinite strength whenever I need it.

Going into last year’s Symposium, I thought I was doing great in my battle with mesothelioma. Nonetheless, I left the conference with ten times the information, hope, and courage I had before, and the people I met there continue to bless my life in real ways every day.

I hope you can come this year. There are sessions and events that touch on all aspects of beating this disease and dealing with its impact on our lives.

Reading information online doesn’t compare to meeting in-person with people who get it because they have lived it and made it through to the other side. In the grim world of cancer, this conference is the happiest place on earth.

I want you to hear voices and see faces all year round. It’s a beautiful, amazing thing.

Announcing the 2014 Symposium Agenda

SymposiumThe agenda for our upcoming 2014 Symposium is now available for viewing! Even though it is still being refined, we wanted you to be the first ones to see the amazing events we have in store for you!

This year, we will host two concurrent events. The International Symposium on Malignant Mesothelioma, a conference for the entire meso community now in its 11th year, will be complemented by a scientific seminar. As always, our Symposium is geared towards attendees from all walks of life, including patients and their families, advocates, medical professionals, and those who have lost a loved one to this disease.

The Mesothelioma Scientific Seminar is a program for scientists and medical professionals only. In order to encourage and facilitate the highest level of information-sharing, collaboration and learning, these sessions are not open to the general public. However, the renowned physicians presenting and attending the Seminar will be available to interact with Symposium attendees outside of their sessions.

About the International Symposium on Malignant Mesothelioma
On Wednesday, March 5, we will kick off the Symposium with Advocacy day. Advocacy presentations by government experts will prepare us for our meetings on Capitol Hill with our elected officials, to educate them and to advocate for increased federal funding of mesothelioma.

On Thursday and Friday, we will cover many topics relating to mesothelioma, from scientific panels to community conversations. Both days will also feature special community dinners to celebrate our award recipients, and our inspiring community. The Meso Fighters Band, composed of individuals directly affected by mesothelioma, will take the stage on Friday night to entertain us with their music.

A “Celebration of Life” tribute ceremony, taking place on Thursday, will honor our loved ones lost to mesothelioma.

Symposium Speakers

General Steven Blum
Raffit Hassan, MD, National Cancer Institute
Hedy Lee Kindler, MD, University of Chicago
Andrew Haas, MD, PhD, University of Pennsylvania
Lee Krug, MD, Memorial Sloan-Kettering Cancer Center
Kenneth Rosenzweig, MD, The Mount Sinai Hospital
Dan Miller, MD, Emory University
Marc dePerrot, MD, University of Toronto
James Pingpank, MD, University of Pittsburgh
Liz Darlison, Mesothelioma UK
Robert Taub, MD, PhD, Columbia Presbytarian
H. Richard Alexander, MD, University of Maryland
Michele Carbone, MD, PhD, University of Hawaii
Andrew Todd, PhD, The Mount Sinai Hospital
Faris Farassati, PhD, PharmD, University of Kansas
Andreas Rimner, MD, Memorial Sloan-Kettering Cancer Center
Charles Simone, MD, University of Pennsylvania
Evan Alley, MD, University of Pennsylvania
Thierry Jahan, MD, UC – San Francisco
Anne Tsao, MD, MD Anderson

Scientific Seminar Speakers

H. Richard Alexander, MD, University of Maryland
Michele Carbone, MD, PhD, University of Hawaii
Joost Hegmans, Erasmus Medical Center Rotterdam
Mitchel Cheung, PhD, Fox Chase Cancer Center
Dario Barbone, PhD, UC-San Francisco
Filippo Giancotti, MD, PhD, Memorial Sloan-Kettering Cancer Center
Il-Jin Kim, PhD, UC-San Francisco
Valerie Rusch, MD, FACS, Memorial Sloan-Kettering Cancer Center
Kenneth Rosenzweig, MD, The Mount Sinai Hospital
Marc DePerrot, MD, University of Toronto
Sheelu Varghese, PhD, University of Maryland
Mitchell Keegan, PhD
Marjorie Zauderer, MD, Memorial Sloan-Kettering Cancer Center
Alessandra DiPietro, PhD
Lee Krug, MD, Memorial Sloan-Kettering Cancer Center
Daniel Sterman, MD, University of Pennsylvania
Andrew Haas, MD, PhD, University of Pennsylvania
Robert Kratzke, MD, University of Minnesota
Ira Pastan, MD and Raffit Hassan, MD, National Cancer Institute
Alain Borczuk, MD, Columbia University
Robert Taub, MD, Columbia Presbytarian
Laura Lambert, MD, University of Massachusetts
Garrett Nash, MD, Memorial Sloan-Kettering Cancer Center
Jesus Esquivel, MD, Cancer Treatment Centers of America
Kiran Turaga, MD, The Medical College of Wisconsin
Paul Sugarbaker, MD, University of Washington
Jason Foster, MD, University of Nebraska
David Bartlett, MD, University of Pittsburgh

You won’t want to miss any of the events of this Symposium, so start making your plans to attend! Registration and hotel reservations can be easily made at www.curemeso.org/symposium.

THE TOP 10 REASONS TO GO TO THE MESO FOUNDATION’S 2013 SYMPOSIUM ON MALIGNANT MESOTHELIOMA

bonnie_aMesothelioma – by now you all know how to pronounce it, and you know that being informed is important. You also know about the Mesothelioma Applied Research Foundation or you wouldn’t be reading this blog. But did you know just how amazing their symposia are?

Let me give you an example of just a few highlights that I’ve seen:

1. People hugging people just because they have this disease in common and needed a hug.
2. Meeting a man in the hotel elevator who had a meso name badge, speaking to him and finding out he is Dr. Harvey Pass, the guru of mesothelioma. (We have since had many conversations together.)
3. Hearing the top meso specialists in the world speak about treatment, hope and the future of research.
4. Meeting a researcher who knew who I was because he works on my slides in research.
5. Letting researchers know how important their work is to patients and families.
6. Giving hope to a young mother who came because she had no idea where to turn to and didn’t know what to do next.
7. Putting a face to a name for those who have and will need support.
8. Knowing you are really not alone and there are others who can help.
9. Running out the door, to grab a hold of a doctor who just gave his speech and have him listen and talk to you on a personal level to answer your questions.
10. To meet other caregivers, patients and families affected by mesothelioma.
11. To be able to sit at a table with researchers and doctors and see that they are touched to know patients and families out of a clinical setting.
12. And finally… to meet Mary Hesdorffer, the woman who has helped save so many of us.

Ok so I lied. Not 10, but so many more reasons for you to attend the Symposium. I guarantee you will be so glad you did.

By Bonnie Anderson

FROM THE FOUNDATION: Your Questions (and the Doctors’ Answers) from the 2012 Symposium — Part Two

The 2012 Symposium has brought together the best minds in mesothelioma research in order to highlight breakthroughs and options in asbestos cancer and mesothelioma treatment. This year, the Meso Foundation enabled a Live Stream in order to bring the Symposium online and allow you at home to interact.

Here is Part Two of the many questions the meso warriors and survivors sent in through the Live Stream.

Q: How can a patient boost his immune system by over-the-counter drugs?

A: There are many products advertised over the Internet and radio which are intended to boost the immune system. Without exception, they’ are all fraudulent. There is no evidence that any drug will generally boost your immune system.

What you need to do is maintain your health as best as possible by eating well and exercising regularly.

Q: Is there different treatment for someone who has sarcomatoid mesothelioma?

A: Unfortunately, the treatment for sarcoma mesothelioma is poor, and the survivals are poor as well. I know of no institution that has survival rates from diagnosis that exceed one year. Such patients should seek out major medical centers specializing in mesothelioma for experimental trials of new drugs.

Q: Are there any new advances in treatment of peritoneal mesothelioma?

A: There have been important advances in the surgical treatment with removal of known disease, combined with intraperitoneal local and regional chemotherapy given as an outpatient. There are a few centers that specialize in this. I would contact the Meso Foundation’s Nurse Practitioner Mary Hesdorffer at 703-879-3820 or mary@curemeso.org for more information.

Q: Is there any other cause of mesothelioma besides asbestos?

A: High doses of radiation are also known to cause mesothelioma. There may be other causes that have not yet been identified.

Q: To follow up on Sugarbaker comment where chemotherapy gives you one year of life and surgery three years of life.

A: Those comments reflect Dr. Sugarbaker’s feelings, emotions, and hopeful anticipation. You are correct that there is no such study which supports those assertions.

Q: Can MRI be as effective as CT scan for peritoneal mesothelioma follow-up?

A: It often can be more effective, especially in heavier patients with a higher body fat content. Different oncologists prefer different test modalities. CT scan itself is safe in this context and I would let your oncologist decide.

Q: Is there any thoughts among medical professionals that stress or other factors trigger mesothelioma?

A: While we generally think that mesothelioma, like other cancers, is caused by abnormalities in the genetic apparatus, stress and other factors in the patient already diagnosed certainly make matters worse.

Q: If younger patients of being diagnosed are there any thoughts That meso be caused by something other than asbestos.

A: This is not clear yet, but it certainly is a possibility. No cause other than asbestos or ionizing radiation has been identified yet, however.

Q: What is the shortest time from exposure to disease? And how many 911 first responders have been diagnosed with mesothelioma so far?

A: Older statistics suggested that less than 1% of mesothelioma’s had a latency time shorter than 15 years. More recently the estimate of latency time has shortened and may possibly be even less than five years.

I believe that there have been two cases of mesothelioma diagnosed in the 9/11 responders, but whether they were due to 9/11 exposure will never be clarified.

Q: What is the cause of mesotheliomas in young children? Is it a predisposition?

A: The cause in young children may be asbestos, and also may depend upon a genetic predisposition. None of this is really known at this point. There are not enough cases to form an opinion.

Q: Don’t you ever feel bad putting patients on placebo even in the trial?

A: Please understand that when doing a clinical trial the physician is not certain whether the drug will help you or hurt you. Otherwise he/she would not be doing the trial. If the drug is strong and there was a chance that the side effects would be dangerous, detrimental, shorten your life,  then he should have a control group that will get a placebo. If the physician is confident that the drug is likely to help you and there is little chance of it hurting you, then he should not administer a placebo; more to the point, he should not be doing the trial.

Q:  What is the most promising new treatment benefitting meso patients now?

A:  In my opinion, the most promising new treatment benefitting meso patients right now is the advent of lung-sparing surgery for patients with pleural mesothelioma.  There is evidence from multiple centers in the U.S. and around the world that for patients with epithelial pleural mesothelioma that multimodality therapy involving lung-sparing radical pleurectomy in combination with post-operative chemotherapy +/- radiation therapy can engender survival benefits which appear equivalent to those historically provided by extrapleural pneumonectomy (EPP).

Q:  What should you do if you think you have been exposed to asbestos?

A:  Absolutely you should inform your doctor of this information, and your doctor can then initiate, if appropriate, a series of tests to assess whether you have been adversely affected by the asbestos.  It is relatively straightforward to determine if your lung function has been detrimentally affected by the asbestos exposure, as well as to whether you currently have lung cancer or mesothelioma.  What is more complicated is the issue of future screening for development of lung cancer or mesothelioma on the basis of asbestos exposure alone.  As there are no standard screening recommendations, the best option would be to consider enrolling on a clinical trial for screening of those who have been exposed to asbestos.

Q:  What is the percentage of people receiving chemotherapy  after surgical procedure such as EPP or P/D (radical pleurectomy-RP).

A: In general, if patients have not previously received neo-adjuvant (pre-operative) chemotherapy, they should receive adjuvant (post-operative) chemotherapy, as long as they have recovered sufficiently after the surgery to be able to tolerate the treatment.  The recommendation is for 4 (or more) cycles of Pemetrexed and Cisplatin (or Carboplatin).  If patients already have received chemotherapy prior to surgery, there is no standard recommendation for giving additional chemotherapy after EPP/RP, but this is an important topic for future clinical studies.

Q:  Is photodynamic therapy (PDT) available to those who have already had surgery?

A: PDT is not currently available for patients who have had prior EPP or RP/PD, but we are very interested in using this treatment to stimulate immune responses in patients who have had recurrences after definitive surgery.  For patients who have had a prior “diagnostic” surgery for biopsy, pleurodesis, partial pleurectomy, it is still possible for them to undergo RP followed by intraoperative PDT.

Q:  What is being done to educate medical students and/or general practitioners in order for them to diagnose patients in a timely manner.

A:  The best methods are the dissemination of evidence-based knowledge through medical journals, textbooks, and scientifically-based internet based resources, as well as including mesothelioma related topics in medical school curricula and in residency training for general internists and family physicians.

Q: With so few patients, are there other ways than randomized double-blind clinical trials?

A: Clinical trials are rare because they’re very expensive, and pharmaceutical companies do not wish to spend a great deal of money on treatment of a rare cancer.

So that doctors are doing exactly what you say, they are reporting small series of cases individually. Please be assured that if it’s a terrific “standout” treatment appearing in  a small series, it will be quickly tested in the largest and most appropriate series.

UPDATE, July 17, 3:52 p.m. — We discovered these missing questions in our Inbox. We’re bringing them to you today!

Q: Why doesn’t everyone get mesothelioma who has been in contact with asbestos.

A: Many cancers, including mesothelioma are multifactorial, that is, they only appear when an appropriate combination of factors comes together. For example, not everyone who smokes a lot of cigarettes gets lung cancer.

Q: Question what happens when you get only one specialist and have to take what you get?

A: You are a consumer of healthcare. Do not have to “take what you get.” If as a mesothelioma patient, you have seen only one specialist, you should get in touch with MARF to help you chart your course among the different providers, specialists, and institutions, so as to get the best treatment.

 

UPDATE, July 25, 10:37 p.m. — One more question discovered in our Inbox from the 2-012 Symposium…

Q: Is there research into chronic pain?

A: There is a great deal of ongoing research into chronic pain syndromes such as you described. Even if an anatomical cause is not identified, much can be done. Usually opiates such as morphine or fentanyl are needed, supplemented with adjuvant drugs such as gabapentin or baclofen. also very new drugs such as  antibody to the mu receptor and drugs targeting the NMDA receptor will soon be available. Many pain specialists at major medical centers can help.