American Cancer Society Releases Most Promising Stats Ever
Numbers are how we measure things. In business they say you have to know your numbers – what is the bottom line? In sports, the final score indicates who the winning or losing team is. In health, the numbers indicate if the disease is growing, if treatments are working, or if we are on the right path.
The American Cancer Society recently released some encouraging statistics for the year 2016-2017. There was a 2.2 percent dropin cancer rates, the largest single-year drop ever recorded. For the past 26 years the decline has been steady.
These results are great news to start the new year with, in the mesothelioma community and for all of us. Malignant pleural mesothelioma, the most common type of mesothelioma, is a cancer of the lining of the lung. The leading cause of death from cancer is a diagnosis of lung cancer.
There are many factors that contribute to progress continually being made. Funding support, scientific research, and patients willing to participate in clinical trials are just a few of the factors.
More than numbers and statistics, this report represents the increasing number of people that are living with cancer. It was not so long ago that receiving a cancer diagnosis was thought of as a death sentence, but not now. Treatments have improved, quality of life has improved, and more people are living longer with a cancer diagnosis.
Numbers do not tell the story of the people and families that are affected by cancer. We are very fortunate as we have seen first hand that some people are living longer with malignant mesothelioma. Not all are yet, unfortunately. They are people with names and families. They all have a story to tell and experiences to share. There are survivors that are out as long as 18 years. They are living and thriving. They are the stories behind the statistics. When they were diagnosed they looked at the statistics, and could not have known that their lives would not have ended six months from diagnosis.
As we go forward in 2020, with this encouraging report, we all hope that this will be the year that the numbers continue to go down even further.
Give the Gift of Time to Mesothelioma Patients
Time is an intangible item that we all want more of. According to Miriam Webster’s definition, “time is the measured or measurable period during which an action, process or condition exists or continues.” As Americans we are all very busy and would love more time. When one is diagnosed with an illness like mesothelioma, time becomes even more important. Questions like how much time do I have left become a focus.
Many reevaluate how time has been spent and how the future will be spent. Recently I was surfing through social media and a woman was asking what she could get her loved one who was diagnosed with mesothelioma. He would be receiving treatment during the holiday and she wanted to ease the burden. She was looking for suggestions to make him feel better, a device, or an idea that would help.
My advice? Give time. Spend time with your loved one. Help those endless hours pass a little easier. If your loved one can be involved in a board game, or any activity that can assist with the passing of long days at the hospital, use those devices.
Many people who have been faced with their mortality like to reminisce about previous days passed. This can be a feeling of safeness and happier days. Allow your loved one to take the wheel and go where they would like.
Older patients often like to plan for the future, their death, burial, and financial arrangements. Please allow your loved one to speak about their wishes. This is a chance to offer respect and acknowledge their wishes.
These conversations can make us feel uncomfortable and unsure of how to respond. Most of the time, just listening and being respectful is all anyone wants. When we listen and respect their thoughts and wishes, the conversation will move to the next topic. Refusing to hear the patient can just become more upsetting.
Time spent with your loved one will never be a regrettable act. A smiling face or a warm hand to hold will be tokens of love and moments that will never be forgotten.
One thing is for certain, no one knows how much time we have. With that in mind, try to stop and offer the one thing that cannot be bought – it makes for a priceless gift. A gift that has continuous rewards for all of you.
Treatments and Therapies for Mesothelioma are Improving
As we close 2019 and welcome 2020, we reflect on some of the progress that has been made in 2019 with advancing the treatment of malignant mesothelioma. One therapy that has garnered attention is immunotherapy.
Many scientists believe that by unlocking the role of the immune system they will then be able to develop targeted therapy whether they be vaccines to enhance the immune system, or targeted therapies that interfere with the immune system.
There are different types of immunotherapy. Some of the initial clinical trial results have been promising for some and disappointing for others. The initial successes point to a one size does not fit all approach. The response rate for patients involved in some initial clinical trials with immunotherapy has been between 10-20 percent for patients with malignant mesothelioma.
The challenge going forward will be to tease out who the super responders are and tailor the therapy from their response. There are a lot of unknowns with immunotherapy as far as how long the positive response lasts, and the timing of when to use other therapies in the treatment plan, but progress is being realized for some patients.
Clinical Trials take time to go through the different phases of the scientific process. And that means one thing that is required is patience, something that seems almost impossible when you are dealing with an aggressive cancer. To put this in progress in perspective, it was not too many years ago that there was no treatment for malignant mesothelioma.
This past year also saw the approval of NovoTTF-100L, a tumor treating fields delivery system for patients with unresectable, locally advanced, or metastatic malignant pleural mesothelioma. Approved by the FDA, this is only the second therapy that has been approved for malignant mesothelioma, the other being pemetrexed plus cisplatin over 15 years ago.
This therapy has been used successfully for treatment of glioblastomas a tumor of the brain. The initial clinical trial conducted in Europe with patients with malignant mesothelioma showed promising results. Whether those results can be replicated and improved on remains to be seen.
Exposure to asbestos is the cause of approximately 85 percent of all malignant mesothelioma cases. One of the most difficult tasks to accomplish has been the ban of asbestos in the United States. The Alan Reinstein Ban Asbestos Now Act continues to work its way through Congress. Through tireless advocacy, his widow Linda Reinstein and the organization she co-founded, Asbestos Disease Awareness Organization, has been trying to change the law. By banning asbestos in the United States it will lessen the chances of people being exposed to asbestos and then developing malignant mesothelioma.
Make 2020 the year that we all can say asbestos is banned permanently in the United States. Until then, we look forward with optimism for the research scientists and their teams to continue to make progress towards a cure in the upcoming decade. Not all of us have the skills or expertise to be involved in scientific research but there are still ways that all of the members of the mesothelioma community can contribute.
Hopeful for Progress in Treating Mesothelioma in the New Decade
Having met many patients from all walks of life who are dealing with malignant mesothelioma, the patients are very open with us as to how their journey with mesothelioma began. As we know, each individual’s disease is as unique as one’s fingerprint.
How people come to find out that they have this disease is often very common. The classic story usually starts out with someone experiencing symptoms like shortness of breath, pain in their chest or back, or maybe a cough. They make an appointment with their doctor to find out what is wrong and how to treat these symptoms. Often people will get diagnosed with another ailment like pneumonia and antibiotics are then prescribed. They may go home and improve or not, and return to the doctor with similar symptoms. This may require more tests, like blood work, chest x-rays, or possibly CT scans. Finally, this leads to a diagnosis, and news that there are not many options.
Mesothelioma is rare and it is aggressive, but medical centers have been fighting this disease for quite some time. Treatment options are improving every day and people are living with this disease. Many physicians are unaware of what treatment options are available because they just don’t have experience with the disease. When people arrive to us, they are filled with fear and uncertainty. A Center of Excellence can offer treatments and more importantly hope. We do not proclaim to cure this disease, but the goal is to treat this disease as aggressively as possible. Not everyone we have treated has lived, but the statistics are improving every year we fight.
As we enter into the next decade, imagine where we will go with treating rare diseases like mesothelioma. We are collaborating with people all over the world sharing the findings from one center to the next. It won’t be one person who cures this disease, it will be every person who has put their time, energy, and knowledge to work attempting to make a difference.
Reflecting back to the late 1980’s and early 1990’s, we have come so far. It is amazing the simple things that have changed caring for our patients. For example, just getting a patient out of bed days earlier than we used to has improved outcomes. We have learned from patients and their loved ones the obstacles that are faced at home. The idea of people sharing details about what works for them, and what has not, has helped many others. As we enter into this new decade of 2020, the work towards a cure continues. The foundation has been set and scientists are energized to continue to fight mesothelioma vigilantly.
If you or a loved one has been diagnosed, reach out to Belluck & Fox today for help.
Planning for Fear with a Diagnosis
When we are living and planning our lives we assume we will be here to complete our plans, to reach our goals, to live a life as we want. But what happens when plans are interrupted by a health challenge? Suddenly all of our plans, goals, and dreams are in flux.
No person is immortal. We know that on an intellectual level, but we usually don’t think about it on a daily basis. The complexities of our lives and our everyday routines allow it to stay in the back of our minds.
When faced with something like a diagnosis of malignant mesothelioma, is it possible to get back to the comfortable level we had before? To push dying back to the place it held in our heads before being diagnosed?
Talking and thinking about dying is usually something we all try to avoid. For some people they have an uncommon fear of death. Thanatophobia is a term used for fear of death or fear of the dying process. This fear can lead to anxiety. Treatment for this condition focuses on learning to refocus the fears, and talking about your feelings and concerns. Some of the symptoms of this anxiety based condition are panic attacks, dizziness, sweating, heart palpitations, nausea, stomach pain, and sensitivity to hot or cold temperatures.
When diagnosed with a new medical condition these symptoms could be attributed to the new diagnosis. When the symptoms are sorted out and anxiety is suspected, it will help the person to speak with someone and talk about their fears.
It can be a challenge for many people to obtain a balance between living and being consumed with anxiety that you cannot enjoy the present. Once people are diagnosed, they often ask how long do I have? The answer usually depends on the stage of the disease, what kind of physical shape you are in, and what you want. That is the intellectual answer. Emotionally, many people don’t hear any of it because they are overwhelmed with anxiety at the thought of dying.
Recognizing that anxiety is a part of the diagnosis of any serious health challenge, and one that needs to be treated as well as the physical symptoms of the disease, will lead to a healthy approach. The goal is to live as best you can both physically and emotionally.
We all strive for balance. Balance with accepting what life challenges us with, and dealing with those challenges, to live our healthiest lives both physically and emotionally.
Help is available. Talk to someone. Reach out to Belluck & Fox today if you’ve been diagnosed and need assistance.
Living a Life that Matters
When someone is diagnosed with a serious medical condition facing a life-altering and possibly life-ending disease, suddenly the fact that we are all mortal slaps us in the face. Most people research the disease, go to medical experts, and find out everything they can about the disease looking for a cure.
At different points of the journey, people often ask themselves what has been and will continue to be important to me in this life. Did you make a difference? Were your relationships strong and sustaining? Were we the best spouse, friend, or parent that we could be? How will we be remembered?
When Pete Frates faced these questions after being diagnosed 7 years ago with a fatal rare disease, Amyotrophic Lateral Sclerosis, he was a young man. He was not married and was at the point that most people consider the beginning of his life. Like malignant mesothelioma, ALS is a rare disease. Funding for rare disease research is difficult to find. Pete Frates and his family – through the ice bucket challenge – raised hundreds of millions of dollars for research into ALS.
Not the path he had chosen, not what anybody would choose. He married, had a child, and inspired the world with his courage. When he died last Monday at the age of 34, he left the world a better place.
Disease does not respect our plans or our dreams. How we handle health challenges and if we go public with our journey is a decision that is up to the individual. For Pete Frates and his family, their decision made a lasting impact.
All of us do not have the opportunity to raise hundreds of millions of dollars for research. We all can live our best lives inspired by this exceptional young man. We are humbled and inspired by what Pete Frates and his family and community have done.
He made a difference. Rest in peace.
“At the end of life, what really matters is not what we bought but what we built; not what we got but what we shared; not our competence but our character; and not our success, but our significance. Live a life that matters. Live a life of love.”
– Author unknown
Asbestos in Philadelphia Schools Reminds Us All to be Thankful Around the Holidays
As we approach the holidays, we often reflect upon what we are thankful for. We also reflect upon loved ones who have lost their battle to an illness. Being diagnosed with cancer is life altering. For some, it seems to paralyze them, for others it gives them a whole different perspective about life. Receiving this information about a new diagnosis of cancer including malignant mesothelioma triggers a host of emotions.
As we meet and visit with patients including people that are newly diagnosed or have recurrence of the disease, the emotions are wide and complex. No feeling is either wrong or right, it just is what you feel. Recently in the news a woman spoke about her new diagnosis of malignant mesothelioma. She had been exposed to a building containing asbestos for many years. As a result, a profession she loved and enjoyed came to a screeching halt.
It is unclear what symptoms had manifested in her to seek out medical help and confirm a diagnosis. I can imagine what the symptoms were that led to her diagnosis, but what she said was also something that I never really considered. With many tears she spoke about how her career has come to a sudden halt. Her tomorrow is tomorrow and she is unable to look beyond that. She was unaware of the asbestos that was in her place of work.
There has been a vigorous clean up at her workplace dealing with asbestos but still many issues are present. This woman talks about having a safe place to work for all, despite socioeconomic background. Fear of what faces her, and the physical pain that the interviewer speaks about is her primary focus most days. Emotional and physical pain is forefront and keeps her present with her illness which is difficult. Certainly identifying how you feel and speaking to others may be helpful but it does not change her situation presently.
Her plan is to have surgery in December and again the future is a bit unknown at this time. Speaking aloud sharing what her illness is, and how she obtained this diagnosis, can be helpful to many. Not everyone is aware of the dangers of asbestos until it hits close to home. As we progress with our knowledge of malignant mesothelioma and other asbestos related cancers, public awareness is key. Social media has also been a valuable tool connecting people to similar situations.
There are many support resources available to patients, families, and loved ones who are dealing with malignant mesothelioma and asbestos related cancers. Public awareness is key to all. Education has become more prevalent while more research has been done with asbestos related illnesses.
Behind every person diagnosed with this rare cancer, there are family members, friends, co-workers who are all affected. As we celebrate the holidays remember the people in our lives that are battling cancer and reach out if possible.
If you or someone you love has been diagnosed, please reach out to Belluck & Fox for a free consultation. We’ve been fighting for patient justice for decades.
Are you a mesothelioma “survivor?”
Many people who have had cancer describe themselves as survivors, or warriors of cancer. Some people prefer “living with cancer.” A cancer survivor is a person with cancer of any type who is still living.
There are more people who are survivors of Mesothelioma than in the past. Some survivors jump out on social media, some are busy with fundraising continuing to try to advance treatment, others quietly lead their lives. Survivors come in many different faces. Yesterday I ran into a middle-aged woman who was a survivor. It has been many years since her initial treatment during which time she was very ill. She worked very hard and had her struggles, but seeing her now, one would never know of her battle with Mesothelioma. Today, from my observation, she is living her life and fulfilling her dreams. She has turned her hobby of art into a form of fundraising. She appears to be enthused about her new idea which creates double the excitement – she is a survivor of a rare disease, and she is trying to improve the lives of others who will battle this disease.
Getting diagnosed with Mesothelioma can be emotionally devastating, but for some, it has shown them something different. Not only do they want to live free from this disease but some want to make a difference for others. As earlier stated, some will jump out and announce what they are going to do while others will quietly lead by example. Some may connect with a new Mesothelioma patient and help coach them through the process. Despite what you do, the goal is to live. There are a million statistics out there regarding malignant mesothelioma, possibly more negative than positive, but be assured there are survivors who are leading busy, productive lives.
Some Individuals who have been faced with cancer prefer other terminology instead of survivor. Some people use the word warrior, or plain and simple “badass.” People’s terminology is usually associated with their personality and their experience with cancer. Whatever the label you prefer no doubt cancer has changed your life and the lives of the people you love. Many people explain that they appreciate life more, they are more accepting of themselves. They also experience anxiety about their health and feel unsure how to cope with life after treatment. We have met many types of people who have shown us how they live their lives, not defined by a diagnosis. Whatever path they chose there is no right or wrong way, it is just the way it is.
Whatever terminology you choose the best way to become that term is to get yourself to a Mesothelioma center. Your odds of beating this or treating this disease as a chronic illness are best fought when you are at a Mesothelioma Center of Excellence. Everyone wants to beat this disease, so reach out to make a phone call or email a healthcare professional with expertise in this field. Find the professional group of caregivers who are consistently working and whose approach to treatment aligns with what the patient wants.
Whether you’re a survivor, warrior, or badass, Belluck & Fox can get you the information and justice you need. Reach out for a free consultation today.
New Tumor Treatment for Malignant Pleural Mesothelioma Approved by FDA
In May 2019, the Food and Drug Administration approved a device for the treatment of malignant pleural mesothelioma under the Humanitarian Use device section of their policy on rare diseases.
What is the new treatment?
This new therapy is Novacures’s Tumor Treating Fields delivery system, or NovoTTF-100L. Tumor treating fields are mild electric fields that pulse through the skin or scalp and interrupt cancer cells’ ability to divide. Electrodes are attached to the skin and attached to a portable device. The person keeps the portable device with them as they go about their activities of daily living. The treatment is portable and does not need to be done in a hospital or clinic setting. The therapy is continuous but can be interrupted for short time everyday. It is advised to be attached 18-20 hours a day to the person.
This treatment is non invasive and does not cause side effects that other treatments might, such as nausea, vomiting, diarrhea, or fatigue. The tumor treating fields work by acting upon rapidly dividing cells of cancerous tumors without affecting normal cells. It targets highly charged proteins in the cells. The proteins are essential to the process of cell division which is how the tumor grows and spreads. With the tumor treating fields device the tumor is then prevented from dividing and growing.
Why was it approved?
Malignant mesothelioma is a rare disease and thus fits the description for approval under the Humanitarian Use Device clause. In order to qualify for this category the FDA must determine that the medical device is intended to benefit patients in the treatment of a disease that affects or is manifested in not more than 8,000 individuals in the United States per year.
The last relevant treatment approved by the FDA was chemotherapy with Pemextred and Altima in 2004.
How was it approved?
The Tumor Treating Fields device was first approved in 2011 for treatment of aggressive brain tumors called glioblastomas. For malignant pleural mesothelioma a clinical trial called STELLAR was conducted in Europe using this technology with patients that have the disease. The results were positive with an increase of overall survival in patients who took part in the trial, all of whom were not surgical candidates. It was used in conjunction with the approved chemotherapy for malignant mesothelioma, Pemextred and cisplatin.
What does it all mean?
This is progress for some patients with malignant pleural mesothelioma. It gives them another option. This is not a cure, but an additional treatment to help overall survival used in conjunction with the first line chemotherapy, pemetrexed plus cisplatin.
When meeting with your mesothelioma expert and team ask if this treatment option would be beneficial for you or your loved one. If you have been diagnosed and are seeking information or justice, please reach out to Belluck & Fox for a free consultation.
Can you screen for malignant mesothelioma?
One of the difficulties in diagnosing malignant pleural mesothelioma is the long time between exposure to asbestos and the beginning of symptoms. The average incubation period for malignant pleural mesothelioma is 20-50 years. Are there any tests that can screen for malignant mesothelioma?
Screening is testing for a disease when there are no symptoms. The reason to screen people is that early detection usually results in better treatment options and improved success in treatment. Screening can help detect cancers earlier and start treatment when the disease is in an earlier stage. These screenings can take the form of blood tests, procedures, or x-rays, depending on the disease. Examples of different screening tests for cancers are a mammogram for breast cancer, colonoscopy for colon cancer, or a blood test for prostate cancer. Malignant mesothelioma – whether it is pleural or peritoneal – is usually diagnosed after other diseases have been ruled out.
In the past few years there has been the development of screening for lung cancer with a low dose CT scan. People that have high risk factors for lung cancer are screened using a cat scan. The yearly screening CT scan is recommended for patients that have a history of heavy smoking, who have smoked now or quit within the past 15 years and are between the ages of 55 and 80 years old.
Researchers in Toronto have conducted a clinical trial screening both people exposed to asbestos 20 years prior and people with known high risks for lung cancer, with a low dose CT scan. These are the same scans that have been used for detecting early lung cancer. Unfortunately, the researchers did not find the low dose scans to be a benefit in screening for malignant pleural mesothelioma.
Screening for cancer is important. Although this study did not prove successful, there are researchers continuing with this important work. Helping to develop a screening tool to detect malignant pleural mesothelioma will hopefully allow people to start treatment earlier.
If you have a diagnosis and need information of assistance, please reach out for a free consultation.