Holidays can be challenging when you or a loved one is dealing with a serious medical issue.
Thanksgiving is a day steeped in traditions; A time for turkey, football, family, and all the reasons to give thanks, we share these rituals with family and friends yearly. If this is the first one that you or your loved one are celebrating with a diagnosis of malignant mesothelioma chances are this one is different.
With the new perspective that comes with dealing with a rare cancer, and facing the unknown that is ahead, giving thanks takes on a new meaning. In addition to your usual support systems, this is a time to lean on the community that surrounds and tirelessly advocates for those afflicted with this mostly preventable cancer.
The mesothelioma community is an active group of family members, researchers, advocates, and caregivers all committed to supporting and advocating for patients and their families. From support groups, political activism, and advocates in the medical and legal community, the work moves forward. This small community continues to support and hopefully improve the lives of the victims and their families.
The mesothelioma community has made extensive accomplishments that slowly, and hopefully, will lead to a cure. We are grateful for the teams of researchers who have dedicated their lives to finding treatments for this complex cancer. The team consists of many people that work in behind-the-scenes labs that are required to complete this extensive work. It is not always successful, but they continue tirelessly, as each new day lays the stepping stones leading to a cure. Although the work is necessary and important, it often goes unnoticed. Without their contributions, there can be no new innovative therapies. We applaud and give thanks for their continued work.
Advocates within the mesothelioma community continue to work on behalf of all victims and their families. They have been working for decades now, to place into law, a nationwide ban on asbestos. The goal has never been closer. This could not be made possible without patients and family members who have made this their lives work advocating for a total ban on the leading cause of Malignant Mesothelioma, asbestos. Knowing the devastation that asbestos causes, they continue on so others may not have to suffer the losses they have. We applaud and give thanks for their continued work.
Caregivers of patients with Malignant Mesothelioma are constantly coordinating, researching, and helping the patients on a daily basis. These caregivers consist mostly of unpaid family members who sacrificed their time and energy, often at the cost of their own health. We applaud and give thanks for their continued work.
On this Thanksgiving, we want to take this time to give thanks to all those in the mesothelioma community that continue to support patients and their loved ones.
On Monday September 26, 2022 National Mesothelioma Awareness Day will be celebrated. This is the day set aside to increase awareness of this life threatening cancer.
Established in 2004 in conjunction with the mesothelioma community and the Mesothelioma Applied Research Foundation, the day was started to bring more attention and funding to this rare cancer.
The mesothelioma community is small. With approximately 3,000 people diagnosed a year with Malignant Mesothelioma, it classifies as a rare disease. It has always been challenging to get the word out about the toll that this deadly cancer takes on its victims and families. Persistence and advocacy have been the hallmarks of the community.
Awareness days can serve as a time to do public education about the disease and increase visibility. It can also serve as a day of celebration and pride, a day to remember those who have lost their battle and those that are in the midst of theirs. To celebrate progress and renew our resolve to press on.
Increased awareness can lead to more funding which potentially leads to more research leading to a cure.
The color blue is the color that has come to symbolize meso awareness. This year the mesothelioma community will be lighting up landmarks blue on September 26th. Starting in 2020 with a few places, last year 30 landmarks across the country were lit up, this year at least 40 will be lit. Continued increased community support increasing public education, another example of the community at work.
On September 26th, take the time to tell someone the facts about malignant mesothelioma – the fact that asbestos is the leading cause of this preventable cancer. Thanks to tireless advocates in the mesothelioma community, we are closer to having a ban on asbestos in the United States than ever before. Spread the word that there are promising new treatments that are being trialed. That research has led the way, steady gains are being realized.
The faces of mesothelioma are family members, friends, neighbors, loved ones they all have stories to share. Wear blue and start a conversation about the mesothelioma community, its victims, and the important work that continues to be done.
The quality of flexibility is best described as the ability to bend without breaking. Facing challenges either physical or mental throughout life and the ability to adapt to the unexpected requires flexibility.
Everyone’s journey in life and facing death is different. Guiding these uncharted experiences can be very difficult for both the person facing their mortality and the family and loved ones trying to help.
When facing end-of-life patients and families often have different perspectives. The perspectives that they have at the beginning of the journey often change as the journey continues.
Recently a patient was facing the end of his life. He had battled his disease for several years and was ready to stop. His family was supportive of his decision and wanted to follow his wishes. The plan was hospice at home with family members taking turns caring for them. The family was able to see that his wishes were honored but it required flexibility. This sounds logical but when emotions and relationships are involved it is not always easy to navigate.
People plan and expect things to go by plan. Everybody has their own scenarios and plans about what they would like their death to look like. Sometimes these plans need to be adjusted. Like birth when the expectant parents have the birthing plan in place, every scenario is planned for. The unexpected happens and the plan needs to be adjusted. Flexibility plays an important part in that.
Malignant mesothelioma is a disease that challenges people every day beginning at diagnosis. It is a rare disease that charts its course from individual to individual.
When facing the end of life for any disease the plan may have to be adjusted. Any disease or end-of-life issue is never neatly packaged and there are no instructions on how to respond and which way to handle decisions and circumstances that are out of their control.
Remain flexible and adjust your expectations throughout your journey. Treasure every moment of this life. Planning is important but the ability to be flexible and adjust to life-ending moments as we respect the wishes of our loved ones is a success. Although the outcome may not be what you were hoping for and the timing may not be long enough, facing our mortality and those of our loved ones is an important part of life.
New Immunotherapy Drugs Show Promising Results for Certain Cancers in Clinical Trials. Is Mesothelioma Next?
Participation in Clinical Trials is how progress is made in medical research. The trials are regulated and must conform to rigorous standards and be able to be replicated. Research scientists dedicate their careers to making progress with treatments for diseases using Clinical Trials. The inclusion and exclusion criteria are very specific. Some Clinical Trials are not able to be done due to lack of enrollment. Participation is voluntary and only with informed consent that the patient can withdraw at any time. In the United States it is estimated that only 5% of adults eligible to participate in a Clinical Trial sign on.
Progress can be slow and results are often not what the researchers had hoped for. Responses can vary by individual participants and success is often made in small percentages of people responding to the treatment.
This past week some very exciting news was published in the New England Journal of Medicine and reported widely in the media. A surprising report was published of the results of a Clinical Trial with a small sample of patients diagnosed with a specific mismatch-repair deficiency rectal cancer and the immunotherapy drug Dostarlimab, brand name Jemperfi. This specific type of rectal cancer makes up 5-10% of all rectal cancers.
Before beginning the standard treatment for this type of rectal cancer, which is chemotherapy followed by radiation followed by surgery, these patients joined a Clinical Trial testing Dostarlimab infusions before the standard treatment. Dostarlimab is classified as an immunotherapy drug. It has been approved by the FDA for treatment of certain types of endometrial cancers. The results were a surprising 14 out of 14 patients having a full remission. No evidence of their disease was found! For 100% of the patients enrolled in the study to have no evidence of disease after six months of treatment is what researchers dream of. The importance of this response is exciting for all of the patients and researchers and for possible results with other cancers. More research with a larger number of patients will need to be done.
These results are encouraging for research for malignant mesothelioma that are ongoing with some Clinical Trials including immunotherapy drugs.
With renewed enthusiasm we encourage those diagnosed with Malignant Mesothelioma or any other cancer to checkout www.ClinicalTrial.gov or ask your treatment team about eligibility to participate in a Clinical Trial.
Just last week, MesotheliomaHelp reported on a corporate partnership for blood test tools that will bring improved results in the detection of key lung cancer mutations. Blood biopsies are shown to be fast and accurate, as well as less stressful on the patients. Now, in another breakthrough using liquid biopsies, researchers report success in the early detection of mesothelioma and screening for multiple cancers using one tool.
Researchers from Johns Hopkins University have developed the CancerSeek blood test that is able to screen for eight different types of cancers and can help pinpoint the location of the tumor. In a recent study of 1,005 cancer patients, the results had a “greater than 99 percent specificity for cancer,” according to a Jan. 19 press release from Johns Hopkins University.[expert_info author=”Bert Vogelstein, Johns Hopkins University”]”This test represents the next step in changing the focus of cancer research from late-stage disease to early disease, which I believe will be critical to reducing cancer deaths in the long term.”[/expert_info]
Although there are screening options for some cancers, such as breast and prostate, mesothelioma, and many other cancers, are diagnosed after the patient goes to a doctor exhibiting some of the signature symptoms of cancer: unexplained weight loss, extreme fatigue and a persistent cough. CancerSeek results had a sensitivity ranging from 69 percent to 98 percent in five cancers that do not currently have any screening test availables, including ovarian, pancreatic, and esophageal cancers.
The test, according to the researchers, looks at eight common cancer proteins and the presence of cancer gene mutations from DNA circulating in the blood. The team developed a “small yet robust panel” that could detect at least one mutation and not lead to false-positives. The test is used for cancer detection only, and does not detect specific biomarkers to drive treatment.
“The use of a combination of selected biomarkers for early detection has the potential to change the way we screen for cancer…,” says Nickolas Papadopoulos, senior author and professor of oncology and pathology at Johns Hopkins.
Pleural mesothelioma, a deadly cancer of the lungs caused by past exposure to asbestos, has a long incubation period where patients may not exhibit symptoms for decades after exposure. By then the disease is already at an advanced, incurable stage.
Early detection of cancer through screening reduces mortality from many cancers, including lung and colon, according to the National Cancer Society. When treating mesothelioma patients, the best outcome is achieved with early detection of the disease by increasing treatment options and improving the patients’ quality of life while battling the cancer.
The tests are still in the early stages of research and are not yet available; however, they may be helpful in diagnosing mesothelioma in the future. In fact, the team anticipates a relatively inexpensive test that may be conducted by a primary care provider.
Read the results of the study in the Jan. 18 issue of the journal Science.
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