New Mesothelioma Support Groups Schedule Announced

Find information about Mesothelioma support groups.The Meso Foundation has announced a new schedule for online and over-the-phone mesothelioma support groups. This new schedule will improve user experience and allow more participants to take advantage of this free-of-charge service.

Currently, the Foundation offers online support groups through private Facebook groups for patients, caregivers, and those who have lost a loved one to mesothelioma. This method of participation is available 24/7 and is immediate. To ensure privacy and a safe environment, all participants are screened before they can be added into the groups.

Telephone support groups, available at regular intervals, offer a more traditional support model through moderated calls that allow participants to listen and share as much as they’re comfortable. Participants in these groups are also screened prior to receiving the call-in phone number.

If you would like to join either the online or over-the-phone support groups, please contact Mary Hesdorffer, NP, at (703)879-3820 or mary@curemeso.org.

Listed below is the updated schedule for over-the-phone mesothelioma support groups:

The caregiver support group, Caregiver Conversations, hosted by Mary Hesdorffer, will meet the 2nd Saturday of every month at 11am EST.
Upcoming dates for Caregiver Conversations:
May 10th, June 14th, July 12th, and August 9th

The support group for all patients, Warrior Voices, hosted by Mary Hesdorffer, will meet the 3rd Saturday of every month at 11am EST.
Upcoming dates for Warrior Voices:
May 17th, June 21st, July 26th, and August 16th

The spousal loss support group, hosted by Miriam Ratner and Judith Hicks, will meet the 1st Tuesday of every month at 9pm EST.
Upcoming dates for the spousal loss support group:
May 6th, June 3rd, July 21st, and August 5th

The Mesothelioma Christian Prayer Group, hosted by Reverend Eric Linthicum and Ginger Horton, will meet the 4th Wednesday of every month at 9pm EST.
Upcoming dates for the prayer group:
May 28th, June 25th, July 23rd, August 27th

An up-to-date schedule of over-the-phone support groups can be found at curemeso.org/support.

Meso Warrior Bill Ziegler Selected as Survivor Advocate

Ziegler Family

In July 2011, Bill Ziegler was diagnosed with pleural mesothelioma at the age of 33. With three young children, including a new baby with his beloved wife Kate, he was determined not to go down without a fight. Bill has undergone chemotherapy, has had a pleurectomy, radiation and WT-1 immunotherapy. This fighter’s spirit led the Meso Foundation to nominate Bill to represent the meso community as a Survivor Advocate within the greater cancer community.

Bill is representing the mesothelioma community as a Survivor Advocate at the 7th Biennial Cancer Survivorship Research Conference: Advancing Survivorship Care through Multilevel Collaboration in June after being nominated by the Meso Foundation. He was one of twenty survivors accepted out of 100 applications. Survivor Advocates will learn about the latest advances in survivorship care and how to improve the quality of life for cancer survivors.

Bill wants to attend this conference because he feels “that you can never have too many resources or be educated enough. Whether it is for treatment, living a better quality of life, or to know what the future holds.” Bill plans to share what he learns with the mesothelioma community. He hopes that his attendance at the survivorship conference and the sharing of his learnings will inspire and encourage his fellow meso warriors.

“As a survivor of an extremely lethal type of cancer,” says Bill, “I feel that I have a responsibility to motivate others to take control into their own hands and make great decisions, while living life to its fullest.”

Introducing Meso-Connect: A Peer-to-Peer Support System

Find mesothelioma support through the Meso Foundation’s new peer-to-peer support system Meso-Connect.This week, the Meso Foundation launched Meso-Connect, a peer-to-peer support system aimed at helping mesothelioma patients and their families to combat isolation by connecting them with peers who are going through, or have been through, a similar experience.

Due to the rarity of mesothelioma (3,500 patients diagnosed each year in the United States) and the aggressive nature of this cancer, most patients feel alone in their fight. For mesothelioma patients, even just obtaining a diagnosis can often be a long process. Finding a specialist and the prospect of drastic surgeries, chemotherapy, and radiation can be even more daunting. For this reason, we have developed Meso-Connect. Through Meso-Connect, the Foundation identifies and connects individual mesothelioma patients and/or their caregivers with members of the mesothelioma community who “have been there, and have done that.” All participants in the program are carefully screened to ensure a safe experience and fit.

This service is aimed at patients in all stages of a mesothelioma diagnosis. For a patient in the early stages of surgical recovery, for example, speaking with a peer who has successfully recovered may provide hope and inspiration. Additionally, the program is also available to caregivers, as well as those who have lost a loved one to meso.

Meso-Connect is also beneficial for those members of the mesothelioma community who choose to be on the helping side. Speaking with patients who need guidance can provide them with a sense of purpose and can serve as a reminder of their own progress.

To participate in Meso-Connect, either as someone receiving help or as someone providing help, patients and families must first register. Once signed up, each participant will be thoroughly screened. Those registrants who indicate they are willing to help others will receive training and guidance prior to their assignment. All participants are expected to comply with the terms, rules, and regulations of the program.

More information about Meso-Connect is available at curemeso.org/mesoconnect.

Hypnosis Therapy may Decrease Fatigue in Mesothelioma Patients

RelaxationIt was recently reported that a clinical trial that randomized patients to receive hypnosis and cognitive therapy had a statistically significant reduction in their fatigue levels as compared to 79 percent of patients who did not have this intervention. The sudy was led by Guy Montgomery, PhD, Director of the Integrative Behavioral Medicine Program at Mount Sinai Hospital in New York.

Two hundred breast cancer patients who were undergoing radiation therapy were eligible to participate in this study. It was unusual to find that six months after the completion of radiation therapy, the intervention group reported less fatigue than 95% of the control group (patients who did not receive hypnosis and cognitive therapy). Mesothelioma patients often receive radiation therapy following the completion of an extrapleural pneumonectomy (EPP) or a Pleurectomy Decortication (PD). Though there are no studies currently underway in mesothelioma, it seems reasonable that patients who will be undergoing surgery plus radiation should be put in touch with integrative medicine to ascertain what services might be available to them.

A few years back, we invited a hypnotherapist to conduct a workshop at the Meso Foundation’s Symposium to aid the community in banishing negative thoughts usually implanted during the initial diagnosis when they were informed of the disease and prematurely provided with a prognosis from a doctor unfamiliar with mesothelioma. A positive outlook certainly does not cure the disease, but patients who are positive tend to eat better, engage with others, and less often fall victim to depression, which could impact their ability to function.

The study, recently published in the Journal of Clinical Oncology (2014; doi:10.1200/JCO.2013.49.3437

The 2014 Symposium Has Begun!

Advocates for Mesothelioma are gathered for the 2014 International Symposium on Malignant Mesothelioma

The 2014 Meso Foundation’s International Symposium on Malignant Mesothelioma began yesterday in Washington, DC. Yesterday, attendees spent the day on Capitol Hill advocating for federal involvement in mesothelioma research.

Today, March 6, attendees have been listening to a variety of speakers and have been learning about topics such as cancer stem cells, pleural and peritoneal mesothelioma, novel therapeutics, chemotherapy, early detection, etc…

The Symposium is also available via live stream to those unable to travel. Click here to learn more about the symposium and watch the live stream