Author: Maja Belamaric
New Facebook Support Group Offers Expert Guidance and Community for People Living with Mesothelioma
A new Facebook support group is connecting people affected by mesothelioma with an experienced specialist nurse who understands the challenges that can come with this rare and overwhelming cancer.
Mesothelioma Nurse Consultation and Support (US-based) is a private Facebook community led by Mary Hesdorffer, RN, MSN, a highly experienced mesothelioma nurse who has dedicated her career to caring for people with mesothelioma and their families.
Although the group is based in the United States, patients, caregivers and family members from the UK and other countries are warmly welcome to join.
Join GroupA space for questions, support and trusted information
A mesothelioma diagnosis can leave patients and families facing difficult decisions, unfamiliar medical terminology and uncertainty about what happens next. Finding reliable information and connecting with others who understand the experience can make an important difference.
The new group aims to provide a supportive place where members can ask questions, share experiences and learn more about living with mesothelioma.
Mary Hesdorffer brings extensive specialist experience to the community. Throughout her career, she has worked closely with people affected by mesothelioma and has authored dozens of peer-reviewed medical publications. Her focus is on helping patients and families better understand their diagnosis, treatment choices, symptom management and the resources available to them.
Members of the group can ask questions about mesothelioma and receive evidence-based educational guidance, while also connecting with others who have experienced similar challenges.
Topics discussed in the group may include treatment options, clinical trials, symptom management, supportive care and practical issues that can arise during a mesothelioma journey. Members will also be able to access trusted educational resources and updates relevant to the mesothelioma community.
Mesothelioma patients and families at every stage are welcome
The group is open to people at all stages of their mesothelioma journey.
That includes people who have recently been diagnosed, those who are considering or undergoing treatment, people exploring clinical trials, long-term survivors, caregivers and family members supporting someone they love.
While the group is US-based, its emphasis on education, peer support and shared experiences means that people from outside the United States can still benefit from being part of the community.
Members can share practical advice, offer encouragement and simply connect with people who understand what it can be like to live with mesothelioma or care for someone who has it.
Join GroupA community built around respect and privacy
Because conversations about cancer can be deeply personal, the group has clear guidelines designed to keep it a safe and supportive environment.
Members are asked to be kind, respectful and supportive of one another and to respect the privacy of everyone in the community. Bullying, discrimination and personal attacks are not permitted.
Spam, fundraising and self-promotion are also restricted unless approved by the administrators. Medical misinformation will be removed or clearly identified to help maintain the group as a trusted source of information.
The group is intended to be a community where patients and families can ask questions without fear of judgement and share their experiences with others who understand.
Educational support, not a replacement for medical care
An important part of the group’s purpose is helping people find reliable information, but the information shared within the community is intended for educational and supportive purposes only.
It should not replace advice from a patient’s own healthcare team. Treatment decisions and other medical decisions should always be discussed with the doctors and specialists responsible for that person’s care.
For anyone facing a mesothelioma diagnosis, having access to both a specialist perspective and a community of people who understand the experience can be valuable.
No one should have to face mesothelioma alone
Mesothelioma can affect far more than the person receiving the diagnosis. It can change family life, create uncertainty about the future and leave caregivers with questions of their own.
The new Mesothelioma Nurse Consultation and Support Facebook group is designed to provide a place where those affected can find information, encouragement and connection.
Chemotherapy Remains Effective After Immunotherapy for Pleural Mesothelioma
A new real-world study from Germany brings encouraging news for pleural mesothelioma patients: the well-known chemotherapy combination of platinum and pemetrexed (Alimta) continues to work well even after immunotherapy. For patients wondering what comes next after first-line treatment, this research offers meaningful reassurance.
Pleural mesothelioma, most commonly caused by prior asbestos exposure, is one of the most challenging cancers to treat. In recent years, the immunotherapy combination of nivolumab and ipilimumab has become a standard first-line treatment for many patients. But until now, doctors have had limited evidence to guide decisions once immunotherapy stops controlling the disease.
There is currently no approved standard second-line treatment after first-line immunotherapy for mesothelioma. This study, published in Clinical Lung Cancer, helps fill that gap by examining what happens in actual clinical practice.
What Researchers Found
The study analyzed data from the German MesoNet registry, covering 135 patients treated at 12 cancer centers who received nivolumab and ipilimumab as their initial treatment. Key findings include:
- 42% of patients (57 out of 135) were healthy enough to receive a second round of treatment after their cancer progressed
- Among those patients, nearly three-quarters received platinum-based chemotherapy combined with pemetrexed
- Patients treated with this chemotherapy lived a median of 11.5 months after starting second-line treatment
- Cancer remained controlled for a median of 5.8 months before growing again
- 28% experienced partial tumor shrinkage, while 47% had stable disease
- Overall, 72% achieved disease control
These results are remarkably similar to outcomes seen when the same chemotherapy is used as a first treatment, suggesting that prior immunotherapy does not reduce the effectiveness of platinum and pemetrexed.
An Important Reality: Treatment Attrition
One of the study’s most striking findings was how quickly some patients became too ill for additional treatment. More than half of patients who started immunotherapy never received a second-line therapy. Their disease either progressed too rapidly and/or their overall health declined.
Only 16% of the original group went on to receive a third line of treatment. This highlights the aggressive nature of pleural mesothelioma and emphasizes why doctors often recommend planning future treatment options early, before a patient’s condition deteriorates.
Consistent Results Across Countries
Researchers compared their findings with similar studies from the Netherlands and Japan. All three reported very similar results, particularly for progression-free survival after chemotherapy. This consistency across different healthcare systems strengthens confidence that platinum and pemetrexed remain a reliable second-line option worldwide.
What This Means for Patients
While immunotherapy has transformed mesothelioma treatment, this study shows that chemotherapy still plays an important place in patient care. Rather than becoming ineffective after immunotherapy, platinum and pemetrexed continued to provide meaningful disease control for many patients.
The findings also reinforce an important lesson: because mesothelioma can progress rapidly, timely evaluation for additional treatment is essential. Patients who remain well enough to receive subsequent therapies have more opportunities to benefit from available treatments.
Limitations to Keep in Mind
This was a retrospective analysis (looking back at medical records), not a randomized clinical trial. Only 43 patients were treated with platinum and pemetrexed, limiting the strength of some conclusions. Future prospective studies are needed to determine the best sequence of treatments and identify which patients benefit most.
Several clinical trials are already underway evaluating new therapies for patients whose disease progresses after immune checkpoint inhibitors.
Source: German MesoNet registry study, published in Clinical Lung Cancer, 2026.
Exploring PIPAC for Peritoneal Mesothelioma: Can Aerosolized Chemotherapy Expand Treatment Options?
Peritoneal mesothelioma is an uncommon form of mesothelioma that develops in the thin membrane that lines the abdominal cavity. Although it represents a minority of mesothelioma diagnoses, the disease can be particularly challenging to manage because it often remains undetected until it has spread throughout the abdomen.
For patients whose cancer is confined enough to be removed, cytoreductive surgery combined with hyperthermic intraperitoneal chemotherapy (CRS-HIPEC) remains the standard treatment with the greatest potential for long-term disease control. Unfortunately, not everyone qualifies for this intensive approach. Extensive tumor spread, underlying medical conditions, or reduced physical fitness may make major surgery too risky or technically impossible.
As a result, researchers continue to investigate alternative therapies for patients with more advanced disease. One approach attracting growing interest is Pressurized Intraperitoneal Aerosol Chemotherapy (PIPAC), a technique designed to deliver chemotherapy directly to cancer deposits inside the abdomen.
A Different Way to Deliver Chemotherapy
Unlike traditional intravenous chemotherapy, which travels throughout the bloodstream before reaching tumors, PIPAC administers chemotherapy directly into the abdominal cavity.
The procedure is performed laparoscopically through small incisions. After inserting a camera and specialized instruments, physicians aerosolize chemotherapy drugs into a fine mist and release them into the abdomen under controlled pressure. The pressurized environment is intended to improve drug distribution and encourage deeper penetration into tumor tissue.
Researchers believe this method may address one of the major limitations of conventional chemotherapy. Tumors growing on the peritoneal surfaces can be difficult to reach effectively, even when chemotherapy is delivered into the abdomen as a liquid. By dispersing chemotherapy as an aerosol under pressure, PIPAC may expose a larger surface area of tumor tissue to treatment.
Another potential advantage is that lower doses of chemotherapy can often be used because the medication is concentrated where the cancer is located rather than distributed throughout the entire body. In addition, the procedure can be repeated over time, allowing physicians to evaluate tumor response and adjust treatment plans as needed.
Why Researchers Are Interested in PIPAC
Peritoneal mesothelioma tends to spread across the surfaces of the abdominal cavity rather than forming a single easily removable mass. This growth pattern creates unique treatment challenges.
Many tumors develop increased internal pressure that can limit the ability of chemotherapy drugs to penetrate deeply into cancerous tissue. Researchers theorize that the pressurized delivery used in PIPAC may help overcome some of these barriers and improve drug uptake.
To better understand the therapy’s potential, investigators recently reviewed 13 studies published between 2017 and 2024 involving patients with peritoneal mesothelioma and other cancers affecting the abdominal lining. While the studies varied considerably in design and patient populations, the overall findings suggested that PIPAC may offer meaningful benefits for selected patients.
Safety and Tolerability
One of the most encouraging observations was the procedure’s overall safety profile.
Across the reviewed studies, most patients tolerated treatment reasonably well. The side effects reported most frequently were abdominal discomfort, nausea, and vomiting. Serious complications occurred relatively infrequently, affecting roughly 8% of patients.
Treatment-related deaths were rare, and many patients successfully completed multiple rounds of PIPAC therapy. This is particularly important because repeated treatments may be necessary to achieve meaningful disease control.
Several investigators also reported improvements in symptom management and overall quality of life. For patients living with advanced cancer, maintaining comfort and daily functioning can be just as important as slowing tumor growth.
Evidence of Tumor Response
Although the available research remains preliminary, several studies reported signals that tumors were responding to treatment.
In some cases, tissue samples collected during repeat procedures showed evidence of cancer regression. Other studies reported reductions in tumor burden based on imaging scans or direct surgical assessment.
Because researchers used different methods to evaluate treatment response, comparing results across studies remains difficult. Nevertheless, the overall trend suggested that PIPAC may have meaningful anti-cancer activity in at least a subset of patients.
Could PIPAC Open the Door to Surgery?
Perhaps the most intriguing possibility is PIPAC’s potential role in helping patients eventually qualify for surgery.
Patients with extensive disease are often considered ineligible for CRS-HIPEC because complete tumor removal is unlikely. However, several studies described patients whose disease became sufficiently controlled after PIPAC-based treatment that surgery later became feasible.
One report found that more than half of patients initially considered unresectable ultimately underwent CRS-HIPEC after receiving PIPAC combined with systemic chemotherapy.
Although these results were observed in relatively small patient groups, they raise the possibility that PIPAC could serve as a “conversion” or “bridging” therapy, reducing disease burden enough to make potentially curative surgery an option for some individuals.
What Do We Know About Survival?
Determining the survival impact of PIPAC remains challenging because most studies have involved small numbers of patients and frequently included several different cancer types.
Even so, reported outcomes have been encouraging. Across various studies, median overall survival ranged from approximately 15 months to more than 26 months. Data from an international PIPAC registry showed a median survival of 33.5 months among patients receiving PIPAC-directed treatment.
These figures compare favorably with historical outcomes for advanced peritoneal mesothelioma. However, researchers emphasize that definitive conclusions cannot yet be drawn because randomized clinical trials are still lacking.
The Need for Better Evidence
Despite growing enthusiasm, PIPAC remains an investigational treatment in many settings.
Most published studies have been retrospective analyses or small prospective trials. Larger studies are needed to determine which patients are most likely to benefit, how often treatments should be administered, and how PIPAC should be integrated with surgery, systemic chemotherapy, immunotherapy, and other emerging treatments.
One study that aimed to answer some of these questions was the MESOTIP trial, which compared standard chemotherapy alone with chemotherapy plus PIPAC. Unfortunately, the trial was halted after unexpected serious adverse events occurred in the combination-treatment group. Although the study did not reach completion, researchers may still be able to learn valuable lessons from the data collected before enrollment stopped.
Looking Ahead
PIPAC represents a novel strategy for treating cancers that spread throughout the abdominal cavity, including peritoneal mesothelioma. Early evidence suggests the procedure is generally well tolerated, may reduce tumor burden, and could potentially help some patients become candidates for surgery when they otherwise would not have been.
Many questions remain unanswered, and further research is essential before PIPAC can be considered a standard treatment. Nevertheless, the results seen so far provide reason for cautious optimism. As ongoing studies continue to evaluate this approach, physicians and patients may gain an important new option for managing a disease that has historically been difficult to treat.
Mesothelioma Continues to Leave a Lasting Mark Across the United States, New Research Finds
Despite decades of asbestos regulations and a significant decline in workplace exposure, mesothelioma remains a serious public health challenge in the United States. New research examining national trends from 1990 through 2023 highlights the ongoing impact of this rare but aggressive cancer and underscores why awareness, prevention, and patient support remain critically important.
Mesothelioma is caused primarily by exposure to asbestos, a mineral that was widely used for much of the twentieth century in construction materials, industrial equipment, shipbuilding, manufacturing, and military applications. Although asbestos use has decreased substantially, the disease’s exceptionally long latency period means that many people are still being diagnosed decades after their initial exposure.
The Legacy of Past Asbestos Exposure
One of the most challenging aspects of mesothelioma is that symptoms often do not appear until 20 to 50 years after asbestos fibers enter the body. As a result, individuals exposed in the 1970s, 1980s, and even earlier may only now be receiving a diagnosis.
Researchers analyzing nationwide data found that mesothelioma continues to cause a substantial number of deaths and years of life lost. While some improvements have been made in reducing occupational asbestos exposure, the disease remains a significant burden for patients, families, and healthcare systems.
The findings serve as a reminder that asbestos-related diseases are not simply historical concerns. The consequences of widespread asbestos use continue to be felt throughout the country.
Geographic Differences Remain Significant
The study also revealed notable differences in mesothelioma burden across various states and regions.
Areas with strong historical ties to shipbuilding, manufacturing, mining, and other industries that heavily used asbestos often continue to experience elevated rates of disease. These regional patterns reflect occupational exposures that occurred many years ago and demonstrate how industrial history can influence health outcomes for generations.
Understanding these geographic trends may help public health officials better target educational initiatives, screening efforts, and patient support resources in higher-risk communities.
Women Represent an Important Part of the Story
Although mesothelioma has traditionally been viewed as a disease affecting men because of occupational exposure patterns, researchers found that women continue to account for a meaningful share of cases and deaths.
Many women developed mesothelioma through non-occupational exposure, including contact with asbestos brought home on work clothing or exposure from asbestos-containing products and materials in homes and communities. These findings highlight the broader reach of asbestos-related disease and the need for continued awareness among both men and women.
Survival Challenges Persist
Treatment options for mesothelioma have advanced over the past decade, particularly with the introduction of newer immunotherapy approaches. Even so, overall survival remains poor for many patients, especially when the disease is diagnosed at a later stage.
Researchers noted that improvements in outcomes have been modest, emphasizing the need for continued investment in mesothelioma research, earlier detection strategies, and access to specialized treatment centers.
Clinical trials continue to explore new therapies that may improve survival and quality of life for patients facing this difficult diagnosis.
What These Findings Convey
The new analysis reinforces a reality that mesothelioma advocates, physicians, and patients have long understood: asbestos-related disease remains an ongoing problem rather than a closed chapter in public health history.
Because mesothelioma develops many years after exposure, today’s diagnoses often reflect workplace and environmental conditions from decades ago. At the same time, asbestos remains present in many older buildings, homes, and industrial sites, creating continued opportunities for exposure if materials are disturbed during renovation or demolition.
The study’s authors conclude that continued surveillance, prevention efforts, and support for research are essential to reducing the future burden of mesothelioma. While progress has been made in limiting asbestos exposure, the effects of past use continue to affect thousands of Americans and their families every year.
For patients and caregivers, the findings offer an important reminder that mesothelioma remains an active area of medical research and public health concern. Continued awareness and early attention to symptoms among individuals with a history of asbestos exposure may help improve access to treatment and support when it matters most.
Should Surgery Be Performed for Sarcomatoid Mesothelioma?
Sarcomatoid mesothelioma is widely recognized as the most aggressive and rare form of mesothelioma. Because of how quickly it spreads and how poorly it responds to treatment, surgery is often not considered a helpful option for most patients.
Still, recent research suggests that there may be limited situations where surgery could play a role. The decision is complex and depends heavily on the patient’s overall health, disease stage, and treatment plan.
Difficulty Treating Sarcomatoid Mesothelioma
Mesothelioma develops in the lining of the lungs and is most often linked to asbestos exposure. It is generally divided into three main types: epithelioid, biphasic, and sarcomatoid.
Among these, sarcomatoid mesothelioma is the least common and the most aggressive. It tends to spread quickly through the chest and surrounding tissues and is often resistant to standard treatments like chemotherapy and radiation.
Because of this behavior, patients with sarcomatoid mesothelioma typically have a shorter life expectancy than those with other cell types. In many cases, survival is measured in months rather than years.
Why is Surgery Not Recommended for Treatment of Sarcomatoid Mesothelioma
Surgery for mesothelioma is designed to remove as much visible tumor as possible. However, sarcomatoid mesothelioma often grows in a diffuse pattern, making complete removal extremely difficult.
Research has shown that surgical treatment does not consistently improve survival for patients with sarcomatoid disease. In fact, outcomes for surgery in this subtype are generally poor compared to other forms of mesothelioma.
For this reason, many clinical guidelines advise against surgery for sarcomatoid mesothelioma, especially when the disease is advanced or has spread widely.
What Recent Research Suggests
Although surgery is not typically recommended, newer studies have explored whether carefully selected patients might benefit from an aggressive, multi-step treatment approach.
One recent clinical study by Dr. Raphael Bueno and his team at Brigham and Women’s Hospital examined outcomes of patients with sarcomatoid mesothelioma who underwent a lung-sparing surgical procedure known as pleurectomy / decortication, where the lining of the lung and visible tumor are removed while the lung itself is preserved.
The study found that:
- Surgery is not standard, but may feasible in selected cases, on carefully selected individuals and only at specialized centers.
- Multimodal therapy is key and other modalities of treatment must be used. The study was conducted prior to the approval of immunotherapy for mesothelioma, so it doesn’t take into account benefits achieved through systemic immunotherapy treatments which could further help improve outcomes in sarcomatoid mesothelioma.
The Role of Multimodal Treatment
Today, doctors are more likely to consider a combination approach rather than surgery alone. This is often referred to as multimodal therapy.
Multimodal treatment may include:
- Surgery in select cases
- Chemotherapy before or after surgery
- Emerging treatments such as immunotherapy
- Supportive care to manage symptoms and maintain quality of life
Even in cases where surgery is considered, it is rarely used on its own. It is typically part of a broader treatment strategy aimed at controlling the disease rather than curing it.
Selection Criteria for Patients with the Sarcomatoid Subtype of Mesothelioma
One of the most important factors in determining whether surgery might be appropriate is patient selection.
Patients with better lung function and overall physical health tend to tolerate aggressive treatments more effectively. In some studies, individuals with strong pre-surgical lung capacity showed longer survival compared to those with weaker respiratory function.
Other factors doctors evaluate include:
- Stage of the disease
- Extent of tumor spread
- Overall health and age
- Ability to tolerate additional therapies
Even with these considerations, surgery remains controversial for sarcomatoid mesothelioma.
The Bottom Line
For most patients with sarcomatoid mesothelioma, surgery is not a standard or highly effective treatment option. The disease is usually too aggressive, and outcomes after surgery alone are generally limited.
However, in rare and carefully selected cases, surgery may be considered as part of a broader treatment plan that includes chemotherapy or other therapies.
Because every case is different, treatment decisions should always be made by a specialized mesothelioma care team with experience in managing this rare cancer type.
To discuss treatment options for your specific situation, including a potential surgical resection, contact our expert mesothelioma nurse.
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