Mesothelioma Help Cancer News
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!
Chemicals Identified As Potential Targets for Lung Cancer May One Day Be Focus for Personalized Mesothelioma Treatments
After five years spent testing and retesting over 200,000 different compounds as candidates to be used in the treatment of lung cancer, researchers narrowed the list down to 170 chemicals. Now, the team plans to delve deeper into the mechanisms of the compounds and to assess the effectiveness against other types of cancers. Potentially, mesothelioma and other aggressive cancer patients will benefit from the new discovery.
The team of researchers from University of Texas Southwestern Medical Center, using the Center’s “unique lung cancer cell library,” set out to identify therapeutic triads, according to an April 19 press release. The search required testing against a trifecta of criteria including finding chemicals that kill cancer cells, biomarkers that predict who would respond, and the therapeutic targets on which those active chemicals work.
The 170 chemicals were tested against 100 lung cancer lines to confirm they all met the three sets of criteria. The resulting chemicals are called the Precision Oncology Probe Set, or POPS. This testing approach is considered unusual for cancer research with the team looking at drugs first, then cancers.
“Almost all cancer research is gene-first, or target-first. We began with the potential drugs,” said Dr. Michael Roth, Professor of Biochemistry and a member of the Simmons Cancer Center.
The researchers report that these findings are “a significant step forward toward personalizing cancer care.” They report that for most of the compounds they identified a biomarker that can lead to the development of precision medicine. This means patients with those biomarkers can receive individualized care.
Personalized care targeted to the unique characteristics, such as the biomarkers, of a mesothelioma patient increases the chance of success, and can extend their survival and improve their quality of life. For most mesothelioma patients, life expectancy is less than a year after diagnosis and they often struggle with daily living tasks. There is no cure, and there are limited treatments for the asbestos-caused cancer.
UT Southwestern researchers are known for their innovative approach to cancer research with their findings bringing hope to the mesothelioma community. MesotheliomaHelp has reported on UT’s research into chili peppers in combating cancer and into a new target in fighting the KRAS gene in cancer. They have also conducted mesothelioma clinical trials.
UT Southwestern Medical Center is one of the few institutions in the country with a treatment and research program dedicated to mesothelioma, according to its website. To find out more about UT Southwestern’s research and treatment for mesothelioma, visit the Mesothelioma program’s website.
Read the full study in the March 28 issue of the journal Cell.
https://www.cell.com/cell/fulltext/S0092-8674(18)30308-8
Sources
- University of Texas Southwestern Medical Center
http://www.utsouthwestern.edu/newsroom/articles/year-2018/170-lung-cancer-drugs.html - Mesothelioma program’s website
https://utswmed.org/conditions-treatments/mesothelioma/ - UT Southwestern Medical Center
https://utswmed.org/conditions-treatments/mesothelioma/
When Caregiving Interrupts Your Life, Get Back to the Basics
MesotheliomaHelp is pleased to have author C. Hope Clark as a guest blog writer. Recently, both of Hope’s parents were diagnosed with Alzheimer’s, bringing her daily routine to a screeching halt. Much like mesothelioma caregivers, Hope found that she had to take care of her needs in order to better care for her parents.
By C. Hope Clark, Guest Author
I’m a novelist, with eight mysteries to my credit. Also, through my educational newsletter at FundsforWriters.com, I’ve motivated writers for 19 years. We’re award-winning, delivering a message each and every Friday for all those 19 years. A nothing-can-get-in-our-way sort of thing.
With a goal to remain positive, I lead a mission to show that anyone with drive, diligence, and a strong degree of hard-headedness can navigate the writing profession. I practiced what I preached through crazy deadlines, relocations, birthdays, weddings, holidays, and more. I preached that a dedicated writer wrote through anything.
Until we had two hurricanes and both my parents were diagnosed with Alzheimer’s within six months of each other.
In their right minds, my parents had designated me as fiduciary and medical power of attorney. Suddenly, tag, I was it . . . the go-to person for everything from where to find a restaurant to how to fire yet another doctor.
I received as many as twenty calls in a day from parents who were angry, saw dead people, and forgot where they lived, usually cursing me for not taking care of issues that didn’t exist. Doctors leaned on me to put them into a home. Family was split on how to do this, and some doctors disagreed with each other. Adrenaline and nightmares often woke me at night as everyone told me what to do but nobody could help me get it done.
Through tears, headaches, and lack of sleep, I kept telling myself to write. After all, I had deadlines. Suddenly my bottomless well found a rock-hard bottom, and not only did I struggle to write, but I wondered if I ever wanted to write again.
Practicing what I preached became more than rhetoric. Especially when my own health took a nose-dive. I felt so naïve.
Expert Insight
The key is not to lose myself in the reality of life ~C. Hope Clark
In the midst of all the chaos of family, moving, doctors, power going out, and being the strong shoulder for parents frantic they were no longer in charge, I looked back at what I taught my readers. . . to see if I’d been spot on or theoretical in my teachings.
And this is what I learned about dealing with a complicated, stressful life:
- It’s okay to write anywhere, anytime, and any way. Forget the perfect study with the proper music background and the keyboard with the just-so touch. The goal is to put words to paper. Fix it later. I wrote 2,500 words while my father received his two-hour neurological test that diagnosed him with Alzheimer’s.
- Compromise is in order. I had a December deadline for the novel, but had given myself an earlier July goal which I’d been keeping nicely with a 500 word-a-day mission. Then all hell broke loose. Seven-thousand-miles-in-two-months-on-my-car kind of hell. I reprogrammed the deadline to October. Regretful, but I was determined to keep on keeping on. The manuscript went in December 20.
- It’s okay to tell people you have limitations. Normally highly active on social media, I didn’t want to just disappear and lose my fan base, so I let people know in my newsletters that I had my hands full, and why.
- On that note, it’s fine to be human. I explained the situation to my publisher. I told family that any day I wasn’t with them, I had to be at the keyboard. I kept one major appearance and cancelled others. Family and writing only. I boiled life down to those two basic needs.
While I’m not home free, the days I have to write are slowly increasing. I still keep a tight restraint on the commitments I accept, for fear I’ll encroach on the two basic responsibilities I have. However, this too shall pass. Right now, I’m excited to see myself coming out on the other side, and thanks to the forced down time, I’m thrilled and excited about 2018. The opportunity to make new, more extensive goals has me practically giddy.
And Newberry Sin, my eighth novel, comes out April 2018. One would never know that those words happened in doctor’s offices, in moving cars, and my parents’ living room at wee hours of the morning. Yes, I’m human, but I’m determined to instill that vulnerable humanity, and the strength that grew from it, into how I manage my new normal . . . and the next books.
About C. Hope Clark
chopeclark.com
C. Hope Clark’s newest release is Newberry Sin, set in an idyllic small Southern town where blackmail and sex are hush-hush until they become murder. The fourth in the Carolina Slade Mysteries. Hope speaks at conferences, libraries, and book clubs across the country, is a regular podcaster for Writer’s Digest, and adores connecting with others. She is also founder of FundsforWriters.com, an award-winning site and newsletter service for writers. She lives on the banks of Lake Murray in central South Carolina with her federal agent husband.
Newberry Sin
Beneath an idyllic veneer of Southern country charm, the town of Newberry hides secrets that may have led to murder.
When a local landowner’s body, with pants down, is found near Tarleton’s Tea Table Rock—a notorious rendezvous spot, federal investigator Carolina Slade senses a chance to get back into the field again. Just as she discovers what might be a nasty pattern of fraud and blackmail, her petty boss reassigns her fledgling case to her close friend and least qualified person in their office.
Forced to coach an investigation from the sidelines, Slade struggles with the twin demons of professional jealousy and unplanned pregnancy. Something is rotten in Newberry. Her personal life is spiraling out of control. She can’t protect her co-worker. And Wayne Largo complicates everything when the feds step in after it becomes clear that Slade is right.
One wrong move, and Slade may lose everything. Yet it’s practically out of her hands . . . unless she finds a way to take this case back without getting killed.
National Healthcare Decision Month is a Time for Mesothelioma Patients to Plan for Care
There are two life experiences that we all share. We are all born, and we are all going to die. We are all going to die, but no one wants to talk about it. If we do talk about death, it is usually in general terms – not from our own personal perspective. Recognizing this issue, there are resources to help all of us think about what we want at the end-of-life.
April has been designated National Healthcare Decision Month, with April 16 named National Healthcare Decision Day. There is a collaborative effort of national, state, and community organizations to help guide you in talking about what you want at the end-of-life, what type of care you want to receive and when you want to receive it.
There are many different possible scenarios for how our lives will end. No one knows when or how, but to let your wishes be known to your loved ones can make a very stressful time less so. There are several organizations that are trying to educate how we view these important topics.
The Conversation Project has starter kits to help get you started with talking about the end-of-life. According to its website, “emphasis is having the conversation on values- what matters to you- not what’s the matter with you.” One of the statistics quoted is that 90% of people say talking to their family and friends about end-of-life is important, but only 27% have actually had the conversation.
Other resources available include Caring Info, Aging with Dignity and The Art of Dying Well.
Malignant mesothelioma is a complicated disease. Some patients are living with this disease as a chronic disease. The disease can take time to evolve to the end-of-life for some, and for others it can be a swift, cruel ending from diagnosis until death. A person’s journey with mesothelioma is individual, that is why it is vital to have a relationship with your mesothelioma expert that knows what you, as an individual, want at the end-of-life.
We have seen many patients that assume that if the disease progresses, or a complication arises, it is the end of their life. Everyone’s course is different, don’t assume that one person can compare to the next.
It is not enough to say that, “I don’t want to end up on machines.” Nobody does. What is important and what is not important to you is what you need to explore and talk about with your loved ones.
Start the process. Think about what is important to you, and let your family and doctor know. This is important for all of us!!!
Sources:
- The Conversation Project
https://theconversationproject.org - Caring Info
http://www.caringinfo.org - Aging with Dignity
http://www.agingwithdignity.org - The Art of Dying Well
http://www.artofdyingwell.org/talking-about-death
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.
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