Mesothelioma Help Cancer News
Riding the Mesothelioma Roller Coaster
My family and I have been riding the so-called “mesothelioma roller-coaster” for over six years now. The ups and downs of this disease are never-ending and, even though my father has since passed away, they continue.
When my Dad was diagnosed, it was instant confusion followed by anger mixed with sadness, anxiety, and grief. Upon completion of surgery and chemotherapy, it was relief and happiness. I remember telling my husband after Dad got a report from the doctor that there was no evidence of disease, that I had thought that I would never be able to truly smile again. During the clinical trial, the good reports kept coming, and we shared so many happy memories in that time that I will always treasure.
When the news came that some mesothelioma had returned, it was back to square one, but in a different way this time. Now, we were educated, and it seemed like the sense of shock of what we were dealing with was muffled a bit. We knew what mesothelioma was this time, the prognosis, the implications of treatment, and so did our close friends and family members. After the radiation that followed, Dad was once again showing no evidence of disease. We thought that once he recovered from the effects of the treatment, he would be back to his old self again, just like before.
That was until the morning that he passed away. Less than an hour before he was gone, I spoke to my father who told me that he was feeling better and better. He told a friend he thought that he was turning a corner toward complete recovery. Ultimately, this was not to be. I don’t need to document the gamut of emotions that I felt that day, but I think it is important to realize that my emotions are still all over the place. The roller coaster ride continues.
Every day, I feel sadness and grief at the loss of the man who shaped me, but gratitude for his presence in my life. I feel joy and warmth thinking back on the memories we made while, at the same time, mourning those we didn’t get a chance to create. I laugh remembering his smile and sense of humor, while shedding tears in knowing that I don’t get to hear it anymore. The aftermath of mesothelioma is something that I will carry with me forever, but I will always keep on loving my father and remembering his beautiful life.
Mesothelioma Nurse Explains the Benefits of Advanced Care Planning
To be diagnosed and live with malignant mesothelioma is a life changing event. It is a long and winding road for many, with twists and turns that cannot be predicted or planned for. This week we saw a patient and his wife who are dealing with the end of life. He was diagnosed two years ago with malignant pleural mesothelioma. He has been through surgery, chemotherapy, a clinical trial, he has made the decision, after there were no more treatment options left for him, to enter hospice care. He has fought the disease for two years and now, he and his wife together, are trying to provide a peaceful death for him.
This sounds like something that should happen peacefully, and the way they want, at home. In talking with them, and many others through the years, this phase is uncharted for them. People are often eager to share their experiences with doctors, hospitals, and treatments, but not many talk specifically, about how they would like their final days to be.
Medicare, the country’s largest insurer, has recognized this as an issue and now provides coverage for patients to have these important conversations before being diagnosed with a terminal illness. Advance care planning is not a form to fill out, it is a process. It is not enough to say that you have an advanced directive or living will. It is not enough to think about what you might want- you need to write it down-and share it with your loved ones.
Since January 2016, the Center for Medicare and Medicaid Services (CMS) has added Advanced Care Planning to the list of reimbursable procedures. This service is a series of conversations with a healthcare professional to assist you in finding out what is important to you. Your wishes for the end of life are your right.
If somewhere in your journey with malignant mesothelioma someone hands you a form to fill out, an Advance Care Directive, know that it is something that requires thought and soul searching for you. It is not a form to be checked off – it a process that you personally need to be involved with. It is your life you decide what is important to you at the end of it!
Mesothelioma Patients Eye Combination Therapy Given FDA Priority Review for Bringing “Significant Survival Benefit” To Lung Cancer Patients
In October 2016, MesotheliomaHelp reported the U.S. Food and Drug Administration approved the immunotherapy drug atezolizumab (TECENTRIQ, Genentech Oncology) for the treatment of patients with metastatic non-small cell lung cancer (NSCLC) whose disease progressed after platinum-based chemotherapy. Now, Genentech reports the FDA has granted priority review for Tecentriq when used in combination with bevacizumab (Avastin), paclitaxel and carboplatin (chemotherapy), for lung cancer patients.
The status was given based on results from the Phase III IMpower150 study, according to the May 6 press release from Genentech announcing the approval. The trial was established to evaluate the safety and efficacy of Tecentriq with the triple drug combination compared with patients receiving the triplet without Tecentriq. Tecentriq is designed to target PD-L1 expressed on tumor cells and tumor-infiltrating immune cells and to enable the activation of T cells, according to the company.
“Our Phase III results showed TECENTRIQ in combination with Avastin, paclitaxel and carboplatin has the potential to provide a significant survival benefit in the initial treatment of metastatic non-squamous non-small cell lung cancer,” said Sandra Horning, M.D., chief medical officer and head of Global Product Development. “We are working closely with the FDA to bring this treatment regimen to people with this type of lung cancer as soon as possible.”
Lung cancer is by far the leading cause of cancer death among both men and women in the U.S., according to the American Cancer Society. The ACS estimates about 234,030 new cases of lung cancer will be diagnosed in 2018, with approximately 154,050 Americans dying from the cancer. Nearly 3,000 Americans are diagnosed with mesothelioma, with close to the same number losing their lives to it each year.
Pleural mesothelioma is an asbestos-caused cancer affecting the lining of the lungs. Although there are clinical differences between lung cancer and mesothelioma, the treatment protocol for the two cancers are similar. Mesothelioma is a terminal cancer with limited treatment options. Any new breakthrough or approval in the treatment of NSCLC is considered a win for mesothelioma patients as well.
A Priority Review designation will direct overall attention and resources to the evaluation of applications for drugs that, if approved, would be significant improvements in the safety or effectiveness of the treatment, diagnosis, or prevention of serious conditions when compared to standard applications, according to the FDA.
https://www.fda.gov/ForPatients/Approvals/Fast/ucm405405.htm
A Priority Review designation means FDA’s goal is to take action on an application within 6 months. Genentech reports the FDA is expected to make a decision on approval by September 5, 2018.
Find out more about the IMpower150 clinical trial at ClinicalTrials.gov.
https://clinicaltrials.gov/ct2/show/NCT02366143
Sources :
- Genentech
https://www.gene.com/media/press-releases/14715/2018-05-06/fda-grants-priority-review-to-genentechs - American Cancer Society
https://www.cancer.org/cancer/non-small-cell-lung-cancer/about/key-statistics.html
Planning Your Mesothelioma Journey
The Royal Family has a new baby! The baby boy’s arrival was expected and joyous. Most women create a plan when they become pregnant: prenatal care, a birth plan, and the date of the baby’s arrival. There is much joy and anticipation on how lives will be changed with the arrival. Education about pregnancy and delivery is easily obtainable by the mother, partner, and extended family. It is a time of life that a lot of plans are made. Everyone’s birth is a different and unique experience.
This was not always the case. Before the 1970’s, hospital births included general anesthesia and longer stays in the hospital, often the mother not remembering the experience and the father nowhere in sight. Times changed, we became more educated and a light was shined on why we do things a certain way and changes were made.
Death is also different and unique for individuals and their families, in that the dying process is still one that most people do not know about. What to expect, and the timing of the symptoms that could mean death is imminent are not well known. Like birth, death is going to happen, but ignoring it until you or your loved one is faced with it, does not help you. For some it remains a forbidden topic and is not discussed at all. Like birth, it is a personal journey.
As baby-boomers age they will be facing health care decisions and end-of-life wishes in record numbers. Ten-thousand people a day become eligible for Medicare, and it is estimated that by 2050, 20% of the population will be over 65.
At a birth, we wish the new arrival a long happy life with the world of possibilities available to them. As we plan for death, we may wish for the time that is left to be of good quality, and for our family and friends to be around us. Or perhaps, we limit the people around us and choose not to have aggressive measures taken. These decisions on this personal life experience are ours to make. Times have changed, we now need to shine a light on the way we currently think about the dying process and how we want our own death experience to happen.
Whether you are diagnosed with an aggressive cancer such as malignant mesothelioma or you are a healthy adult, no one knows when their time on this earth will end. No one wants to talk about one’s end of life wishes, but it is a conversation that should be had. Starting the conversation may prove difficult for some, there are ways to make it more comfortable.
Start the conversation, you never know how and when you will be thankful that you did start it!
Family Members Want to Care for Their Loved Ones with Mesothelioma
For many different reasons, sometimes it’s hard to ask for help. You don’t know who to ask, you don’t want to impose, you’re embarrassed, or you don’t want to admit that you need the assistance. These can ring true for anyone, but I’ve found it to be quite prevalent in the mesothelioma community.
This group is made up of warriors! It’s a group of strong, resilient, and let’s face it… sometimes stubborn (and that’s not a bad thing!) people who are steadfast in their fight. They don’t want to make others feel as though they are putting them out, or be what they think is a burden on their loved ones. I am here to tell you, that no caregiver feels that way.
We are caregivers because we care and want to give anything we can to those we love. We are honored to support you in any way that you need. I know that there were times where my father hated asking me for things; I’m an adult, I lived three hours away, and I had “my own life.” Just because I am married with a business and a family doesn’t mean that he wasn’t still very much a part of that life. Things were added, but in no way was he subtracted.
I was so blessed to be there for my Dad during his surgery and recovery. I was able to be there to help during the clinical trial and visit multiple times during his radiation therapy when he was in NYC for weeks. I am blessed to have a life that allowed me to travel to be with my parents and make frequent trips back to my hometown. Dad also visited me at my home, and my husband and I loved doting on him, making him the king of the castle!
So, as Dad would say, “the moral of the story” is to never be afraid to ask your loved ones for help. Don’t push them away when all they want is to be pulled closer. You are loved by many, and those people are just waiting for a chance to help. God bless all caregivers and the ones they care for… in any capacity!
Free Mesothelioma Patient & Treatment Guide
We’d like to offer you our in-depth guide, “A Patient’s Guide to Mesothelioma,” absolutely free of charge.
It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.
Download Now