Mesothelioma Help Cancer News
Balancing a Mesothelioma Diagnosis With Hope and Trust
On a Sunday morning talk show, Senator John McCain who was recently diagnosed with glioblastoma, an aggressive brain cancer, talked about his diagnosis and how he was dealing with it. “I’m facing a challenge. But I’ve faced other challenges, and I’m very confident about getting through this one as well.”
Like malignant mesothelioma, glioblastoma is an aggressive cancer. Scientists have been working on treatment options for both of these diseases. Progress towards a cure takes time, and reality is that some will benefit from others who have gone before them.
Balancing the devastating diagnosis of an aggressive cancer with hope is also a challenge. Hope that a cure will be found in time for you or your loved one to benefit from. In addition to hope, you also need to trust. Trust that your medical experts will recommend the right treatment in the right time frame that will improve your quality of life. Trust that you have chosen the path that is right for you. Hope that you get some quality time with your loved ones.
Over the years of taking care of mesothelioma patients, one of the things that is reinforced daily is the complexity of the disease. From obtaining a diagnosis, to staging, treatment options, timing of chemotherapy, surgery, radiation, or the possible involvement in a clinical trial, this aggressive disease has many sides. We learn about aggressive cancers by brave victims that have suffered with this disease before us.
As we all face challenges throughout our life, and Senator McCain has lived through many daunting challenges, we are reminded about how complex the cancer diagnosis can be. We wish him only the best possible outcome as he starts his journey. When someone famous or powerful is diagnosed with cancer, it can serve as a reminder to all of us of our mortality. No one is exempt from health challenges, it is how you handle them, and who you surround yourself with, that can determine how what could be the final chapters in your life will play out.
Senator McCain’s journey is beginning. Wherever you, or your loved one, is on your journey may you know peace of mind and be surrounded by hope and trust in your medical decisions.
Ask Jennifer: How Did You Hide Your Worry About Your Father’s Mesothelioma?
If I had a superpower, it would be worrying. You name it, I worry about it. As much as I try to stop, it’s something that just seems impossible to me; however, with a lot of praying, it’s starting to get better.
Even so, when my Dad started to fall ill, I began to panic. I played out every scenario of what could be wrong, how we would handle it, and ultimately what the happy outcome would be. (Even though I worry, I’m an optimist… odd juxtaposition, I know.) One thing that I never thought of was mesothelioma. I knew next to nothing about it and thought it was something that you just saw on commercials. There was no way it was happening to my father.
People sometimes ask me how I managed my worrying tendencies during these trying times. The answer is, I didn’t. I tried my best to hide it, especially in front of Dad, but I think that everyone saw through my act. Even at the moments where my strength may have appeared to peak, I was completely broken inside. I don’t know how I made it through any of it; I take that back, I only made it through because of God.
A lot of the time, I tried to put on a happy face and pretend that I wasn’t concerned. After we received good news, we celebrated, and I was absolutely thrilled each time, but in the back of my mind, that old fear always seemed to creep in. I thanked God for the joy, but wondered when the next wave of sadness would begin.
Still today, even though we’re approaching the four year anniversary of his passing, there is still sadness in my heart from his loss. It’s true that I am extraordinarily happy with my husband and daughter, and with my family who loves me unconditionally, but there is still a piece missing that could make that happiness even more amplified. I am constantly questioning what Dad would be doing today if he were here, or what would he think about certain situations. I always want to send him a picture of my child or tell him the funny thing she said, just to hear his beautiful laugh.
A piece of me is missing without Dad, but what is also missing is the worry I carried for him. I am certain that he is in Heaven where there is no worry or sickness. He is free from this awful disease. I know that he is looking down on me, and that he doesn’t want me to worry about him anymore; he is with God, laughing and smiling each and every second.
Global Study Shows Mesothelioma Deaths Continue to Rise
In March, MesotheliomaHelp presented information on the increasing number of mesothelioma cases in the U.S., but researchers continue to struggle to get a handle on the worldwide trend of mesothelioma. Now, in a newly released study, researchers concluded that globally, the incidence of mesothelioma cases has continued to rise.
An international team of researchers from Japan, Australia, the United States, the UK, Thailand and Singapore set out to determine the burden of mesothelioma deaths throughout the world. The team analyzed data from the World Health Organization’s mortality database of 230 countries for 1994 to 2014.
Realizing some countries are better at reporting mesothelioma cases, they broke the 230 countries into three groups:
- 59 countries with quality mesothelioma mortality data suitable to be used for reference rates;
- 45 countries with poor quality data; and,
- 126 countries with no data.
Using the countries reporting quality data, the researchers counted 15,011 mesothelioma deaths in the last three reporting years, 2011-2014. They then extrapolated from this information that the global number of mesothelioma deaths is 38,400 per year.
“The estimates are within the range of previously reported values but higher than the most recently reported values,” the researchers said.
Expert Insight
“The global numbers and rates of mesothelioma deaths have increased over time.”
While the researchers say the estimate depends on the validity of the data, they noted that their estimates “can be updated, refined and verified” from the commonly accessible data and their use of a “straightforward algorithm.”
Mesothelioma is a rare, aggressive cancer that is caused by past asbestos exposure. Although asbestos is banned in over 50 countries, a surprising number of them still mine asbestos and use the mineral in construction products. The U.S. has not banned the product and still imports over a 1,000 tons of it a year, according to the Asbestos Disease Awareness Organization.
When assessing the reported data, the researchers report that due to mesothelioma’s rarity and difficulty in diagnosing the disease, many countries are still struggling with accurate reporting. They also said reporting from even the “quality data” countries was not consistent. In fact, they said, “No country reported mesothelioma deaths for all of the 21 studied years.”
“Clearly, mesothelioma is a global health issue,” the team concluded.
Read the full study in the Sept. 2 issue of Occupational and Environmental Medicine.
The Faces and People Behind the Mesothelioma Statistics
When diagnosed with malignant mesothelioma, the survival statistics can be daunting to comprehend. Statistics are numbers, and it is vital that you remember that there are people behind those numbers. People with lives and families, like your own. Sometimes it is good to hear stories of people that are living with mesothelioma as part of their lives. Professionals tell us that there are survivors, but to talk to one, to see one living their best life can be very helpful for both patients and caregivers.
In the publication “Breath of Hope,” by the Mesothelioma Applied Research Foundation, the cover is about two people with malignant pleural mesothelioma who have connected after both having one of their lungs removed. These two people, Heather and John, connected in 2013 on Facebook. Heather is a survivor. Diagnosed in 2005, she had surgery in 2006 in which she had a left extrapleural pneumonectomy with heated intra-op chemotherapy.
John was diagnosed in 2012, and he underwent a right extrapleural pneumonectomy after undergoing chemotherapy before the surgery. Every person’s journey with mesothelioma is different, but there are similarities in the positive lessons they have taken from their experiences.
John talks about how important music has been throughout his life, and even more so now with his journey with mesothelioma. Heather was a hair professional before mesothelioma. She has been unable to go back to that line of work, and she has shifted her focus to patient advocacy.
Heather said, “I look at things far differently than I did before cancer and would say I’m a better person for it. I’ve tried taking something terrible and find the good.”
Both are parents of a daughter. Both have learned to savor every minute of being a parent, of being alive, and in being able to influence their daughters.
Both acknowledge that there have been times of despair. Both have had challenges along the way. Both are living their lives with mesothelioma. Both have become friends with similar interests besides mesothelioma.
Heather finishes the article saying, “…it’s the people that are the silver lining in every storm.”
People not statistics, stories behind the numbers, faces of survivors with malignant pleural mesothelioma sharing their journey and their lives, helping others. Living with mesothelioma.
Mesothelioma Community Excited About First-Ever Gene Therapy Approval From FDA
In July, MesotheliomaHelp reported on the pending approval of two different types of gene therapy for treating cancer and inherited diseases. Last week, the U.S. Food and Drug Administration announced approval of one of the therapies in a landmark approval of the first-ever gene therapy for a type of leukemia. The mesothelioma community is hopeful that this approval will lead to a new treatment for the incurable cancer.
In an August 30 press release, the FDA announced its “historic action” with the approval of Kymriah (tisagenlecleucel), from Novartis Pharmaceuticals Corp., for the treatment of a form of acute lymphoblastic leukemia (ALL). The press release conveyed an air of excitement in announcing that the first gene therapy approval in the United States is “ushering in a new approach to the treatment of cancer and other serious and life-threatening diseases.”
“We’re entering a new frontier in medical innovation with the ability to reprogram a patient’s own cells to attack a deadly cancer,” said FDA Commissioner Scott Gottlieb, M.D. “New technologies such as gene and cell therapies hold out the potential to transform medicine and create an inflection point in our ability to treat and even cure many intractable illnesses.”
The FDA explains how the new therapy will work:
“Each dose of Kymriah is a customized treatment created using an individual patient’s own T-cells, a type of white blood cell known as a lymphocyte. The patient’s T-cells are collected and sent to a manufacturing center where they are genetically modified to include a new gene that contains a specific protein (a chimeric antigen receptor or CAR) that directs the T-cells to target and kill leukemia cells that have a specific antigen (CD19) on the surface. Once the cells are modified, they are infused back into the patient to kill the cancer cells.”
Known as CAR-T, the new therapy is a process that genetically alters a patient’s own cells to fight cancer. Mesothelioma medical professionals hold out hope that ultimately this gene therapy could ultimately bring an effective treatment to mesothelioma patients.
Expert Insight
Francis S. Collins, M.D., Ph.D., Dir. NIH
“I’m eager to see where our immunotherapy researchers take us next!”
In a 2013 article for MesotheliomaHelp, Ricki Lewis, a science writer with a PhD in genetics, wrote about CAR-T treatment saying, “An ingenious technique that has vanquished leukemia in a handful of patients is also being applied to mesothelioma.” She was referring to a mesothelioma clinical trial from the University of Pennsylvania that uses the “doctored T cells,” known as chimeric immune receptor (CIR) instead of CAR, against mesothelin, a protein that is found to be in excess in mesothelioma and other cancers. The idea is that T cells led to the mesothelioma cells will attract an immune response, said Lewis.
Find out more about the mesothelioma clinical trial from University of Pennsylvania here.
Although the Director of the National Institutes of Health, Francis S. Collins, M.D., Ph.D., heralds immunotherapy as “one of the most exciting areas of progress” in cancer treatment, he notes caution should be taken in the widespread use of the drug, according to an Aug. 30 NIH Director’s Blog entry.
“Many questions must be addressed before we can herald immunotherapeutic approaches to cancer an unqualified success,” said Collins. “There are still too many severe reactions, too many non-responses or relapses, and, potentially, a very high price tag for their widespread use, which will be truly challenging to scale up. But we’re off to a promising start.”
Mesothelioma is a cancer caused by past exposure to asbestos. Nearly 3,000 Americans are diagnosed with the terminal cancer each year.
Sources:
- August 30 press release
https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm574058.htm - NIH Director’s Blog
https://directorsblog.nih.gov/2017/08/30/fda-approves-first-car-t-cell-therapy-for-pediatric-acute-lymphoblastic-leukemia - mesothelioma clinical trial
https://clinicaltrials.gov/ct2/show/NCT01590472
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