Hope in the Big Apple: The Meso Foundation’s “Knowledge Is Hope” Conference

It doesn’t seem that long ago that we were all in Washington D.C., coming together for the 2012 Symposium. After such a successful and inspirational event, what does the Meso Foundation plan for next?

How about a one-day event on the week of Mesothelioma Awareness Day? That is exactly what we plan!

On September 28, 2012, on the heels of Mesothelioma Awareness Day, the Meso Foundation (with a generous educational grant from Levy Phillips & Konigsberg, LLP) will proudly present “Malignant Mesothelioma: Knowledge Is Hope.” This is a one-day conference in New York City, NY, focusing on patients, families, doctors, and anyone wanting to understand more about malignant mesothelioma. It’s a jam-packed day-long agenda includes:

  • A return to the Plaza for raising awareness during the Today show
  • Sessions on standard treatments, ongoing research, complementary therapy, environmental/occupational exposure risk, and legal implications
  • Morning presentations featuring Lee Krug, MD; Marc Ladanyi, MD; Harvey Pass, MD; Kenneth Rosenzweig, MD followed by a questions and answers panel
  • Afternoon presentations by Garrett Nash, MD; Robert Taub, MD; Mary Hesdorffer, NP; Kathleen Wesa, MD; Jacqueline Moline, MD; and Robert Komitor, Esq.
  • Musical entertainment by Leon Pendarvis, musical director of Saturday Night Live
  • …and much more.

“Knowledge Is Hope” brings top experts in mesothelioma from the New York area to the Harvard Club of New York City, located on 35 West 44th Street, New York, for a day of education and awareness. This event promises to be a day of information, a day of science and research, and a day of discussions over the recent advances in mesothelioma treatment.

Registration is $25 per person (includes all sessions, breakfast and lunch). Register by clicking here or by calling the Meso Foundation at (703) 879-3797. Registration fees will be donated back to the Meso Foundation. Availability is limited. You must register before our deadline of September 10.

Knowledge is hope. Join us for this incredible day in New York City.

REMINDER: Support Group Tonight — CAREGIVERS

For those of you new to the Meso Foundation blog, we offer many resources here ranging from Social Media Moments to updates from Capitol Hill to success stories from the front lines of fundraising. Beyond our blog, though, we also offer a wide variety of resources on our website — CureMeso.org. Alongside podcasts, an Advocacy Ambassador program, and answers to your questions on mesothelioma, we also offer support groups, hosted by our Nurse Practitioner, Mary Hesdorffer. We understand the mesothelioma experience can often feel daunting and isolating which is why, every two weeks, we offer telephonic groups where people gather, talk, and listen.

Tonight’s group is a Caregivers Group, meeting at 7:30 p.m. If you wish to register and join a group, please contact Mary at mhesdorffer@curemeso.org or call the Foundation at (877) 363-6376 or consult our website for details.

We hope to talk to you soon.

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

Currently happening at the Omni Shoreham Hotel in Washington, DC and hosted by the Mesothelioma Applied Research Foundation, the 2012 Symposium has brought together mesothelioma scientists, doctors, medical professionals, mesothelioma patients and their families, and other advocates together in order to showcase research, discuss options, and raise awareness in finding a cure for mesothelioma. While many are in attendance, there are some that for a variety of reasons cannot attend. This is one reason why we at the Meso Foundation have enabled a Live Stream that brings the Symposium to you.

The Meso Foundation has assembled an exceptional agenda featuring presenters such as Raja Flores, MD, Giovanni Gaudino, PhD,  Steven Hahn, MD,  Harvey Pass, MD, Daniel Sterman, MD, David Sugarbaker, MD, Raffit Hassan, MD,  Robert Kratzke, MD, Lee Krug, MD, and many others. The theme of the Symposium is “What’s Your Question?” and attendees have taken this to heart. Here are some of the questions our special guest physicians have addressed during our first Symposium Live Stream.

Q: How did the phase I clinical trial with the WT1 peptide vaccine go?

A: Stay tuned! I will be discussing the results in detail in the afternoon session.

Q: What is the role of photo-dynamic therapy following thoracic surgery for mesothelioma?

A: Photodynamic therapy involves the delivery of a drug that sensitizes a patient’s tissues to light, and then light is shined directed on the tumor tissue. This has been a strong area of research interest from Dr. Friedberg at the Univ. of Pennsylvania who uses it to treat the surface of the chest wall after surgery for mesothelioma. The effectiveness of this technique remains unclear, and he is the only one pursuing this approach at the current time. This has been studied previously by Dr. Pass who did not find it effective, though Dr. Friedberg may have more promising results. Photodynamic therapy may increase the risk of surgical complications, and should only be done in the setting of a clinical trial.

Q: I have blood in my urine. Can meso reach the kidneys?

A: There are many causes for blood in the urine (hematuria), the most common being a urinary tract infection. Others include bleeding issues (for example, for patients on blood thinners such as Coumadin), other drug toxicities, or tumors that start in the kidney or bladder. Hematuria caused by tumor metastases is much less likely. It would be quite rare for pleural mesothelioma to spread to the kidneys. Peritoneal mesothelioma could potentially cause it by invading into a part of the urinary tract. The work up would include a urine test for infection, imaging such as ultrasound or CT scan, and possible a cystoscopy (scope procedure to look in the bladder).

Q: Is there any relationship between having an EPP and being one of the fewer than 10% of patients who develop bone cancer?

A: I presume by “bone cancer,” you mean a metastasis (spread) of mesothelioma to the bone. This can unfortunately occur to some patients with advanced mesothelioma, regardless of whether or not they had surgery.

Q: Since my husband had meso, should my daughter be tested for the BAP1 mutation – or is it even available?

A: Although BAP1 mutations occur in about 20% of mesothelioma tumors, they are usually “spontaneous” mutations, and we think familial BAP1 mutations are the cause of mesothelioma for a relatively small percentage of patients. However, if there is a history of mesothelioma in other family members, or of melanoma, particularly ocular melanoma, then it would be reasonable to discuss the pros and cons of BAP1 genetic testing with a genetics counselor. Information on this gene is just now emerging, so we don’t yet know what to do with the results.

Q: Should patients have CT, PET/CT, or MRI for surveillance scans?

A: Radiology imaging for mesothelioma is notoriously challenging, and all of our current techniques have limitations. For patients with pleural mesothelioma, I generally follow them with simple CT scans. I find PET/CT most useful at diagnosis to determine the degree of tumor spread (stage of disease), though I think it can be difficult to interpret the significance of minor changes on the PET scan when used for follow up. MRI of the chest is less optimal due to respiratory motion that occurs during the longer time necessary to acquire the images. Newer imaging techniques are needed, and are being explored such as measuring tumor volume.

Q: Is there a consensus on how often a patient should be tested for recurrence?

A: No formal consensus, but the practice is to follow by physical examination CAT scan approximately every three months during the first year, then every six months for another 18 months, then yearly until five years. There is no consensus after five years but it is unlikely that continued surveillance will be of benefit.

Q: Where would you recommend someone to be tested for possible 

A: even in individuals heavily exposed to asbestos, the risk of mesothelioma is less than 1%, so that screening of asymptomatic individuals isn’t very helpful. Also,the interval between Asbestos exposure and the development mesothelioma is estimated to be greater than 15 years again making yearly surveillance not very helpful. Those who do have clear evidence of asbestos exposure such as pleural plaques, should be looked at at least once every two years by chest x-ray or CAT scan.

FROM THE HEADLINES: International Team from the University of Hawai’i Identifies Protein Critical in Development of Mesothelioma

Former Mesothelioma Applied Research Foundation’s grant recipient, Dr. Haining Yang  (University of Hawai’i), is once again making news with the recent discovery of a protein that is activated following exposure to asbestos leading to the development of malignant mesothelioma.  As reported by MedicalXpress.com, Dr. Haining Yang, PhD, and an international team of researchers have identified HMGB1 as a critical protein in the development of malignant mesothelioma. Dr. Yang’s findings are the cover story of the July 1’s Cancer Research, one of the nation’s leading cancer research publications.

“We are very excited about this discovery and are extremely pleased that it was also chosen to be the featured cover story,” said Yang. “The next step is to translate this discovery into actual treatments for mesothelioma patients.”

This discovery into the growth of mesothelioma offers scientists an opportunity to develop specific therapies for mesothelioma patients. Mesothelioma, a malignant tumor of the lining of the lung, abdomen, or heart known to be caused by exposure to asbestos is considered one of the most aggressive of all cancers. Approximately 3,000 Americans are diagnosed with mesothelioma every year, yet available treatments have limited effectiveness. Identifying this biomarker for early detection will help shed light on developing new treatments for mesothelioma prevention and therapy.

Earlier this year this same lab worked collaboratively with others to announce the first gene associated with malignant mesothelioma BAP1. Dr. Giovanni Gaudino from the University of Hawai’i will be discussing BAP1 and its possible utility as a target for therapy and identifying those at high risk to develop mesothelioma at the Meso Foundation’s 2012 Symposium during the “Demystifying Scientific Breakthroughs” panel. It is a very exciting time for mesothelioma research and the promise for further scientific breakthroughs will be the focus of discussion at the Symposium.

The current study was an international effort and included investigators from the University of Hawai‘i Cancer Center, the John A Burns School of Medicine in Honolulu, the San Raffaele University and Research Institute in Milan, Italy, the National Institutes of Health in Bethesda, Md., and the New York University School of Medicine.

Taking in the Sights: Things to Do in Washington D.C.

Before we know it, the Mesothelioma Applied Research Foundation’s 2012 Symposium will be happening. Some of you may be joining us online (and welcome aboard — make sure you have your questions ready for the asking!), but for those of you making the trip to the Nation’s Capital, maybe you will want to plan an extended weekend around your time with us.

Sounds like a solid plan as there is a lot to see and do in Washington. Just off the top of our heads, we can recommend:

Along with these sights, there are some terrific exhibits geared for all kinds of interests in the week of the 2012 Symposium: Continue reading “Taking in the Sights: Things to Do in Washington D.C.” »