Author: Lisa Hyde-Barrett
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].
Nurses and Mesothelioma Patients Benefit Equally from a Friendly Ear
This past week one of my co-workers, an RN who I have worked with for decades, lost a young family member to cancer. As a community we grieve for the loss of this young, newly-married man. His journey with cancer was swift, debilitating, and heart-wrenching to hear about. Through my co-worker, we learned what an ordeal it had been for him, and for everyone in his family. After he died she texted me with the news, and thanked me for all the support. This tragedy made me reflect on how important it is to listen more. We all have different life experiences and we can all offer something to someone going through a crisis – a suggestion, a story, or maybe just an ear.
Throughout life, our relationships note the important times and the mundane times of our life’s journey. Relationships are what keep our lives rich. Although patients and their families living with mesothelioma did not elect to go on the cancer journey, one of the unexpected side effects is that it can strengthen their relationships with each other.
As a nurse, I have been fortunate to have many coworkers with whom I have worked with for decades. We have known of each other’s relatives – husbands, parents, children – most we have never met, but we know a lot about them. We have been through life’s happy experiences including weddings, births, anniversaries, and birthdays. We have supported each other through personal hard times like the death of a parent, a divorce, illnesses and accidents.
We remember patients who have been gone for years, we remember funny stories and very sad stories. We support each other. We are a community of people bound by our jobs and a genuine caring for each other. Like the mesothelioma community we come from all different backgrounds, cultures, and have varied personalities and life experiences. Also, like the mesothelioma community, we might not know the lasting effect kindness and listening can have on a person dealing with a crisis.
As you or your loved one continue on this journey with mesothelioma, remember you do not have to go it alone. Reach out for support. As the Beatle’s song goes, “I get by with a little help from my friends.”
Know more about Mesothelioma and how you can deal with it.
Patient’s Mesothelioma Journey is Different From Each Other
For patients diagnosed with mesothelioma, “journey” is the word used often to refer to the different steps of the patient’s condition. According to the Oxford Dictionary, journey is defined as “An act of traveling from one place to another,” or “A long and difficult process of personal change and development.” Both of these definitions can be applied at different points for mesothelioma patients and their families. No one knows what the journey will look like, or how long it will be, as each patient‘s experience is different.
This past week, our medical team saw patients and families who were at different points on their journey. We saw a gentleman who had surgery 25 months ago. He came for a follow-up and stopped to see us: he looked well. It was shocking to see him walk in with his family and with a smile on his face. The last time I saw him he was fragile and weak, and his personality had dulled from his illness. He was subsequently discharged to a rehab facility, but he did not flourish and his family decided to take him home. One of the healthcare workers asked him if he was enjoying life now, and he said, “Yes, but it is different now.”
He doesn’t work so much anymore. He has learned to enjoy different things that make him happy, like taking his grandchildren out for ice cream cones. He is being maintained on chemotherapy which he said is okay, and it is just another thing he has learned to live with. His only complaint is back pain from his surgical site where they removed his lung. His family was with him and his grown children have also begun to move on with life. For example, his daughter who was his primary caregiver, has taken a new job, relocated, and is enjoying her life.
Two years ago he or his family or his healthcare team could not have foreseen that he would have recuperated enough to smile and enjoy life. On the flip side, I spoke with someone on the phone who is frustrated with this disease and how it is stripping her loved one of his life. A few short months ago he was moving around fine, but now he needs a lot of assistance with everyday living. His wife is trying to reassure him and help him enjoy his life, but he is so limited from the physical weight of the disease. Is this a progression of his disease or is it another bump in his journey?
Journey is a great word to describe the mesothelioma experience. The journey can be “a long and winding road,” with unexpected turns and twists, that no one can predict. The “long and difficult process of personal change and development” can apply to life with mesothelioma, a journey no one knew they were going to make.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].
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