Mesothelioma Help Cancer News
Nurse Explains Cancer Staging
Staging of a person’s cancer is done for many different reasons. According to the American Cancer Society, staging is defined as: “The process of finding out how much cancer is in the person’s body and where it is located. It’s how the doctor determines the stage of a person’s cancer.” For mesothelioma, there have been various different staging systems put in place over the years at different institutions. This sometimes leads to confusion regarding the language, a patient’s prognosis, and for scientists hoping to speak a common language when collaborating.
Most cancers are staged using the TNM classification system. T stands for the primary tumor, N stands for the lymph nodes- whether the cancer has spread to nearby lymph nodes, M stands for metastasis, whether the cancer has spread to distant parts of the body. Each of these three classifications- T, N, M – is then broken down with more descriptive information. Once the extent of the T, N, M classifications have been determined, they are then assigned an overall stage. There are also other factors that affect the stage, including the grade- how the cells look under the microscope, cell type, location, and tumor marker levels. Once cancer is staged it always remains the same. If you are diagnosed with Stage 2 cancer, it will always be referred to as Stage 2 even if it goes into remission, or metastasizes to other organs.
For many years, mesothelioma experts did not have a defined staging system exclusively to describe mesothelioma. A mesothelioma expert once said mesothelioma is so rare just having the diagnosis of mesothelioma, at an earlier point in time, would have gotten you into a mesothelioma clinical trial.
As testimony to progress, a group led by Dr. Valerie Rusch of the Memorial Sloan Kettering Cancer Center, in conjunction with the International Mesothelioma Interest Group, and other organizations has defined a new staging system for pleural mesothelioma. The importance of mesothelioma staging system is uniformity in describing the disease. The effect of various treatment options can be studied and perfected for the different types of pleural mesothelioma.
More evidence that the treatment of mesothelioma is being advanced on many fronts and further work towards a potential cure!
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].
Writing About Mesothelioma & Family’s Journey
People often ask me, “Why do you keep writing and working for a cure for mesothelioma, even though your Dad is no longer here?” Continuing to work for and with the mesothelioma community is not even a question for me. I do it because it matters.
My Dad is no longer with us, it’s true, but the memories he left me and the impact he had on my life are still vibrant. I do this so that his struggle will not have been in vain. He meant something to so many people, and I want his story to inspire others to not give up and have strong faith in God.
I write because I hope that my family’s journey can bring comfort to someone in need. I hope that if there is a person struggling or looking for an answer, they can find some respite in what we went through. Sure, we went through a hard time, but maybe we can help somebody from going through the troubles that we did.
I work because mesothelioma is already an orphan disease. Why should I orphan it as well? It is because people don’t talk about it that this cancer has become so little-known. They say that knowledge is power. I want to bring about as much awareness as I can to highlight the dangers of asbestos and to work to prevent one more person from suffering from this disease.
It matters. This cause, so close to my heart, that took my beloved father from me, matters. You matter. Your loved one matters. Your story matters. Never forget that, and never stop fighting.
Mesothelioma Patients Should Heed FDA Warnings Regarding Miracle Cures
In pursuit of its mission to protect the public health by ensuring the safety and efficacy of drugs, the U.S. Food and Drug Administration sent out warning letters to 14 companies claiming their products can prevent, diagnose, treat or cure cancer. The products, none of which have been approved by the FDA, can be appealing to mesothelioma patients or anyone fighting a terminal cancer, but they could lead to severe illness or, potentially, death.
In each of the 14 letters, found on the FDA’s website, the Agency notes that the items being marketed fall under the Federal Food, Drug, and Cosmetic Act due to the intended use in the cure, mitigation, treatment, or prevention of disease. The letters go on to itemize examples of the claims on the company’s website, product label, social media and other media that provide evidence the products are intended for use as drugs.
It is a violation of federal law to market and sell products that claim to prevent, diagnose, treat, mitigate or cure diseases without first demonstrating to the FDA that they are safe and effective for their labeled uses.
Among the 65 products the FDA cited are claims for a tea with “cancer killing properties”; a vitamin that can “stop cancer cells from multiplying, kill cancer cells, and block their blood supply”; and drugs that are a “chemopreventive agent due to their ability to modulate underlying mechanisms involved in carcinogenesis.”
“Consumers should not use these or similar unproven products because they may be unsafe and could prevent a person from seeking an appropriate and potentially life-saving cancer diagnosis or treatment,” said Douglas W. Stearn, director of the Office of Enforcement and Import Operations in the FDA’s Office of Regulatory Affairs, in the April 25 press release announcing the warnings.
Although there are the rare cases of individuals who have survived mesothelioma through holistic care, the saying “it takes a village” is applicable to the fight against mesothelioma. A mesothelioma care team may include the family physician, a medical oncologist, pulmonologist, surgeon, radiologist, nurses, pathologists, nutritionists, rehab therapists and social workers.
Mesothelioma is caused by the inhalation or ingestion of airborne asbestos fibers. In the case of pleural mesothelioma, the fibers lodge deep in tissue surrounding the lungs, causing inflammation that festers for years. Chronic, persistent inflammation is a known cause of cancer, and in the case of mesothelioma, can take decades to develop into a malignancy. Mesothelioma is deemed an incurable cancer, with an estimated survival of less than 18 months after diagnosis.
Many mesothelioma patients turn to holistic treatments as complementary treatments to help relieve symptoms and to ease stress, but anytime a company makes a claim that its product can cure cancer, you can be sure the claim is fraudulent.
“We encourage people to remain vigilant whether online or in a store, and avoid purchasing products marketed to treat cancer without any proof they will work,” said Stearn. “Patients should consult a health care professional about proper prevention, diagnosis and treatment of cancer.”
The companies have 15 days from receipt of the letter to respond to the FDA with information regarding the actions they have taken to correct the violations and to assure violations do not happen again. According to the FDA, failure to correct the violations promptly may result in legal action, including product seizure, injunction and/or criminal prosecution.
Remembering Loved Ones Lost to Mesothelioma
Each spring a Memorial Service is held for families that have lost loved ones to mesothelioma. It never gets any easier to see the personal toll that this deadly cancer has taken. Remembering patients and families that have dealt with the death of a loved one from mesothelioma is sobering. Every year a member of the mesothelioma medical team talks about the progress that continues to be made toward a cure. Although not fast enough for these families and loved ones, the update always helps everyone in attendance, by offering hope. Hope that no other patients and families will have to go through what they have been through and suffer the losses that they have.
The service is a testimony to the generosity of the human spirit. Although their loved ones are gone, the families and loved ones are their representatives on earth. By putting a face to the patient, and showing the whole picture of the victims of this disease, researchers can take this snapshot of their relatives back to the lab with them for inspiration in the coming year. Each year there is progress to report and each year there is appreciation for the continuous support of these brave families, and continued support of the work needed for a cure.
There is a lot of ambivalence about attending a memorial service like this. From our experiences over the years, when the service is over families feel better. By acknowledgment that their loved one’s fight is over, and that they have potentially helped other patients in the future, does provide some comfort for the families. For some it is difficult to come back to a place that holds painful memories.
One family member acknowledging that she almost did not come, spoke of coming back to a place that had offered her and her family hope when they could not find it anywhere else. Although her family member had died, she was grateful for the quality time they did have together.
The reasons for attending are as varied as the patients. Stories and memories are shared,and a grateful community leans on each other to continue on to a day when there will be no need for an annual Memorial Service for mesothelioma patients.
Mesothelioma Patients Can See Improved Survival By Reporting Side Effects
Chemotherapy and other treatments for mesothelioma can lead to debilitating side effects such as pain, nausea and fatigue. But patients often suffer in silence with their symptoms which, when left untreated, can lead to severe complications, and even death. Now, researchers say it does not need to be that way, and, in fact, by opening up to their physicians, patients can improve their quality of life and their survival.
Researchers from Memorial Sloan Kettering Cancer Center followed 766 advanced cancer patients undergoing care at the Center, according to a June 4 report from ABC News (https://abcnews.go.com/Politics/wireStory/emergency-bill-fund-veterans-affairs-department-32742493). Hoping to catch issues before they became severe, researchers gave some of the patients access to an online tool to report to their medical team weekly, or more often if they experienced unusual or severe symptoms. The patients self-reported information on 12 common symptoms including appetite loss, diarrhea, shortness of breath, fatigue and pain.
After just six months, the patients in the online reporting group had an improved health-related quality of life and fewer trips to the emergency room. In addition, overall, they stuck with the chemotherapy treatment two months longer, eight months as opposed to six months in the non-online group.
Surprising even the researchers, median survival of the patients in the online group was nearly six months longer at 31 months versus 26 months for the control group. Researchers believe the survival was tied to early responsiveness to patients’ symptoms that prevented “adverse downstream consequences” and increased tolerance to chemotherapy allowing them to continue on the treatment beyond usual care.
“I was floored by the results,” said the study lead, Dr. Ethan Basch, a researcher at the University of North Carolina-Chapel Hill and Memorial Sloan Kettering Cancer Center in New York. “We are proactively catching things early.”
When a patient reported a concerning health issue, a nurse responded immediately almost 80 percent of the time. They would get the patient prescription medications, or appropriate care, to handle their specific issues. The tool gave the patients an easy way to report issues without struggling to get through to their doctor or wait for their next appointment.
The researchers concluded, “Electronic patient-reported symptom monitoring may be considered for implementation as a part of high-quality cancer care.” They now plan to launch a larger study to test the online reporting system nationwide.
Mesothelioma is diagnosed in approximately 3,000 Americans each year. Although treatments increase survival, countless mesothelioma patients have said the treatment is worse than the disease. That is not necessarily the case, and patients should not hesitate to reach out to their medical team to help alleviate some of their side effects.
Results of the study were presented at the 2017 ASCO Annual Meeting in Chicago. Find the full study in the June 4 issue of Journal of the American Medical Association (http://jamanetwork.com/journals/jama/fullarticle/2630810).
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