Category: Nurse’s Corner
Recurrence of Cancer is Mentally Challenging
The possibility of the recurrence of cancer is something that everyone diagnosed with cancer lives with every day. Recurrence of mesothelioma is often difficult to avoid. According to the American Cancer Society, “cancer recurrence is defined as the return of cancer after treatment, and after a period of time during which cancer cannot be detected. The same cancer may come back in the same place it first started or somewhere else in the body.” There are three different types of recurrence, local, regional and distal.
There is a difference between recurrence and progression. When cancer spreads or gets worse it is classified as progression of disease. When dealing with mesothelioma from a psychological viewpoint, recurrence or progression can be just semantics.
When mesothelioma recurs it takes a toll on everyone – patient, family and caregivers. There are treatment options for recurrence which can include surgery, clinical trials, radiation, or chemotherapy, all designed to help the mesothelioma patient‘s quality, and length of life.
Once a specific therapy is once again selected it is important for patients and their families to “get their head back in the game.” This can be a challenge. After having gone through the initial diagnosis, and treatment plan, and returned to life with a “new normal,” the news of a recurrence can be devastating.
One patient who had a recurrence of mesothelioma 18 months after diagnosis was surprised at the news. Although he knew it was a possibility, he was not prepared for the news. His scan was positive, and he was now faced with another round of decisions. Did he want to continue on this path or should he shift his focus to fighting the symptoms and the pain? He has gathered his options and will discuss them with his family and his team. Together they will come to a decision that is right for him and his family.
As a community we can see the progress that has been made. But as individuals, and family members, the terms, semantics and statistics become very personal when dealing with mesothelioma progression or recurrence.
Mesothelioma Nurse Remembers Doug Larkin, Co-Founder of ADAO
There are few people that are passionate leaders for change. These leaders see something that needs to be changed or a situation that needs to be exposed and they take their zeal and passion and make it happen. The mesothelioma community lost one of those leaders this month: Doug Larkin.
In 2004, he and Linda Reinstein co-founded the Asbestos Disease Awareness Organization. Based on a personal loss of his father-in-law, he took his grief and turned it into positive advocacy. He hoped to prevent asbestos exposure and to someday eliminate all asbestos-caused diseases. ADAO was personal to Doug.
I had the pleasure of meeting Doug at an ADAO conference a couple of years ago. We were impressed with his passion and his eloquence. He was a force, and I remember being impressed with his dedication to banning asbestos. He has made a difference, and left this world a better place for being in it.
“Unparalleled champion for truth, justice, and an asbestos ban”; “Bold brilliant and courageous” are the words being used to describe Doug on the ADAO web site.
In addition to fighting to ban asbestos so that the dying from asbestos related diseases would stop, Doug had a personal battle with ALS, Amyotrophic Lateral Sclerosis. Rest in peace, job well done.
Photo Credit: ADAO
This Spring Brings Breakthroughs and Hope to Mesothelioma Community
There are many reasons this spring for victims of mesothelioma and their families to be optimistic regarding progress towards a cure. There have been several research articles that have been published that have identified sub groups of mesothelioma, and different interventions that have worked on certain subgroups of patients.
There is no magic pill or one-size-fits-all approach to finding a cure for this complicated disease. Progress is being made. There is excitement among the scientists that they are chipping away on many fronts. Immunotherapy, chemotherapy, identification of the type of mesothelioma, and combinations of therapies are all actively being explored.
Some of the exciting findings that have been published are:
- Identification of four distinct molecular subtypes of mesothelioma: sarcomatoid, epithelioid, biphasic-epithelioid (biphasic-E) and biphasic-sarcomatoid (biphasic-E).
- Identification of recurrent gene mutations in several genes.
- That recurrent gene fusion and splice alterations to be frequent mechanisms for inactivation of three genes in malignant pleural mesothelioma.
The above were published in Nature Genetics, February 2016, authored by Raphael Bueno et. al.
What does all this mean to a patient with mesothelioma today? In today’s world, and in the future of personalized therapy, understanding what drives malignant pleural mesothelioma on the genetic level is essential. With this information the diagnosis and prognosis can be more accurately personalized. At some point in the future, therapy will be tailored to the patient’s individual tumor type. Drug therapy can then be tried to interfere with the pathways.
None of this progress would be possible without participation in clinical trials. There is no magic bullet for mesothelioma that will cure it overnight. With this research we are further down the path of personalized mesothelioma care with the expectation that lives will be prolonged and a cure will be in the future.
Just as spring is a season of new growth, opportunities, and new beginnings, this research brings new hope to victims and their families of mesothelioma.
Mesothelioma Nurse Recaps Mesothelioma Applied Research Foundation’s Houston Symposium
This year the Mesothelioma Applied Research Foundation is having three conferences “on the road.” The first of the series was held in Houston, Texas on May 20. I have had the pleasure of attending a few Meso Foundation conferences over the past years, and it is my impression that each one is better than the one before. This conference did not disappoint.
Houston is home to two cancer centers with mesothelioma specialty centers: M.D. Anderson Cancer Center and Baylor St. Luke’s Medical Center. Anderson’s mesothelioma program is headed by Dr. Anne Tsao, a medical oncologist, and Dr. David Rice, thoracic surgeon. Baylor’s mesothelioma program is headed by Dr. David Sugarbaker, an international expert on mesothelioma.
The mesothelioma community at these conferences is represented by patients, family members, caregivers, medical experts, health care workers, advocates, and members of the legal community. Attendees can watch presentations by researchers on their latest findings, they can ask questions of the experts, and they can network and meet others who are also dealing with mesothelioma.
My takeaways from the Houston conference include:
- Clinical Trials are showing the way to a personalized approach to treating mesothelioma.
- The goal is to get to a point that mesothelioma is a manageable, chronic disease.
- This spring has brought breakthroughs for the future treatment of mesothelioma.
- The feeling among the researchers was that they are progressing towards a cure.
- Some studies have shown promising results for the four subtypes of mesothelioma.
Nationwide, the number of cancer patients who participate in clinical trials is between 3-5% for adults. The Mesothelioma Applied Research Foundation reports that mesothelioma patients consistently reach out to them to ask about clinical trials, and the number who participate in mesothelioma trials is over 55%. This is one of the tangible, impressive services that the Meso Foundation provides for the mesothelioma community.
The doctors who presented were passionate about helping patients with mesothelioma. It was evident that the next generation of researchers who presented have the passion to continue the work towards a cure.
Collaboration, research, clinical trials, awareness, advocacy, are the keys to further progress towards a cure. Patients and families were encouraged to get involved and to request more money for research for this cancer from the government and other sources.
The next two conferences for mesothelioma are being held in San Francisco on September 16, and in Chicago on October 7. Get involved- knowledge is power!
Mesothelioma Recovery Requires Close Attention to Detail
Mesothelioma is a rare disease and is difficult to diagnose. Once diagnosed, some patients undergo surgery as part of their treatment plan. I’ve found over the years of treating patients after mesothelioma surgery, that there are many extremes in what people think is important, and what they don’t see as important.
Some of the symptoms that you should be aware of are dizziness, persistent coughing (more than you are comfortable with), shortness of breath, weight loss, weight gain (puffiness in your extremities), constipation, pain, weakness (not able to do what you could do a day or two ago), and fever. Paying attention to the way you or your loved one is feeling is important for a smooth recovery. Nutrition is also an important factor to monitor including how much food, and what types of food are being consumed. Also, ensuring the patient is abiding by the fluid intake requirements is important.
Medications and their side effects can also be an issue. When patients leave the hospital after surgery many are on pain medication. As everyone is different, it is important to pay attention to the constipation issue and follow a bowel regime. Often patients are on beta blockers for their heart rate and, sometimes as they get better, the dosages need to be adjusted.
Some of these points seem like they are simple, common sense things. It is surprising, however, how quickly they can escalate into serious issues when they are not addressed. It is important to listen to yourself: if something does not feel right, or if have a question about it, reach out. Call someone on your medical team and get the reassurance that you need.
A successful recovery is a team sport and you are the center of the team! Mesothelioma recovery can be tough, but together with your support system and your mesothelioma team preventable complications can be avoided.
Reach out if you have any questions!
If you have any questions regarding any aspect of your mesothelioma treatment, feel free to email me at [email protected].
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