The Mesothelioma Applied Research Foundation recently held its regional symposium in Minneapolis, and I was thrilled to only drive 10 miles to the hotel it was being held, since I live in a suburb of Minneapolis/St. Paul. Every other year, the Meso Foundation takes its “show on the road” for smaller, more intimate gatherings to spotlight regional medical facilities and healthcare professionals. As most everyone knows, we happen to have the world-renowned Mayo Clinic just minutes south of the Twin Cities.
As a long-term survivor of mesothelioma, I enjoy going to these symposiums, so I can stay up-to-date on what’s new in the meso world and also get to know other doctors who treat it. This symposium was largely attended by experienced patients, so the subject matter discussed by many of the doctors was more geared toward that. The event was kicked off by the Meso Foundation’s director, Mary Hesdorffer, and the Science Advisory Board Chair, Tobias Peikert, who is also a doctor at The Mayo Clinic.
Updates on Mesothelioma Treatment
The day began with Dr. Jacob Strand, also from The Mayo Clinic, talking about palliative care. In my opinion, this subject does not receive enough discussion in the treatment of cancer. So many people equate palliative care with the thought that “there is nothing else that can be done,” when, in fact, palliative care is about giving the patient the best quality of life possible. Dr. Strand outlined what palliative care is and what an asset it can be to all patients.
Next up was Muaiad Kittaneh, MD, of Loyola, who discussed genetics, the BAP1 mutation, and its importance in mesothelioma. Many of the studies of this mutation are still in the beginning stages and much more needs to be done to determine its significance in the diagnosis of mesothelioma.
After the discussion around genetics, more discussions began around developments in mesothelioma treatment. Dr. Jason Foster, a world-renowned surgeon from the University of Nebraska, discussed surgical options for peritoneal mesothelioma. He also talked about MRI vs. CT scans in the ongoing monitoring of peritoneal mesothelioma and the importance of HIPEC in its treatment, which has been found to significantly improve survival rate.
Dr. Tobias Peikert then talked about radiation treatment, its effects and toxicities. He was followed up by Dr. Kenneth Merrell from the Mayo Clinic, who discussed the differences between X-ray, electron and proton radiation and its use in palliative instances as well.
Perhaps the most exciting development is the emergence of immunotherapy treatments for mesothelioma. Although surgery and chemotherapy remain the gold standard of treatment, immunotherapies are showing great promise in second line treatments and in conjunction with chemo. Participation in clinical trials is vital, however, to speeding up the discovery of more effective treatment.
This was a great introduction to Dr. Aaron Mansfield, who gave us a rundown on clinical trials for mesothelioma, including his own clinical trial at the Mayo Clinic. He talked about novel approaches to mesothelioma treatment, which include the following:
- Chemotherapy followed by immunotherapy
- Chemotherapy + ADI-PEG followed by immunotherapy
- Immunotherapy followed by chemotherapy
- Anti-mesothelin followed by chemotherapy
- Chemotherapy followed by anti-mesothelin
Our hope is that one or more of these treatments lead to the next standard of care in mesothelioma.
The Importance of Community
The day wrapped up with a cocktail reception where all of the participants could get together and talk. It’s the community aspect that keeps me coming back to these. The doctors even hung around after and talked with anyone who wanted. One of the things that really impresses me about these doctors is that they so willingly give of themselves to the foundation. They’re always willing to talk with patients and caregivers, and offer their expert advice. It’s comforting to me to know this level of care is so close if I need it.
The day after the symposium, a memorial service was held for those who lost a loved one to mesothelioma. We all gathered for a butterfly release on the rooftop garden of the hotel, a lovely oasis in the middle of the city full of flowers and trees – perfect for the butterflies.
Even though it was lightly raining, it didn’t deter anyone from coming. Through my advocacy work, I have gotten to know many of the families who lost a loved one to mesothelioma, and honoring their memory with these families was very personal to me. After the butterfly release, we walked to a local restaurant, had lunch, and I was asked to say a few words. Every one of the families who lost a loved one to meso is so incredibly supportive of me and my work, and I have always been humbled by that support.
I took this moment to thank them for not only supporting me, but the Meso Foundation as well. So many people could just go back to life after a loss and never be involved, but that isn’t the case with many of the families in the meso community. They continue to be involved, support and fundraise for the foundation and are my biggest cheerleaders. I’m proud to be a part of this community and am thrilled that we got to host everyone here in Minneapolis.
There is one more regional symposium coming up this fall if you would like to check it out. The next one will be in New York City on Friday, October 5, 2018, at the Marriott New York East Side. I encourage you to check it out, as well as other mesothelioma events coming up coming up, for many reasons, but mostly to know that you are part of a fantastic and supportive community.
