Mesothelioma Help Cancer News

When Caregiving Interrupts Your Life, Get Back to the Basics

• Lisa Hyde-Barrett
• Caregiver Stories

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

• Lisa Hyde-Barrett
• Nurse's Corner

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

Drug Targeting Specific Protein Could Lead to Personalized Mesothelioma Treatment

• Nancy Meredith
• Featured News

Anti-cancer drugs known as kinase inhibitors have often been used in the treatment of pleural mesothelioma and many other cancers. The drugs attack the protein kinases in an effort to prevent cell division and to kill the cancerous cells. Now, researchers report they have found that an investigative drug can effectively shrink tumors in patients with lung cancer and other difficult to treat cancers with a specific kinase. Pleural mesothelioma patients could benefit as well.

According to researchers from The University of Texas MD Anderson Cancer Center, in the first-in-human study of the investigational, oral drug BLU-667, “the drug appears to be promising” in cancers caused by an alteration in the receptor tyrosine kinase known as RET, or rearranged during transfection. The drug is “a highly potent and selective RET inhibitor” shown to have limited toxicity in the patients.

“Tumor reductions and durable responses were observed in most patients, especially those patients whose cancer progressed with chemotherapy and multi-kinase inhibitors,” said Vivek Subbiah, M.D., Assistant professor of Investigational Cancer Therapeutics at MD Anderson Cancer Center, in an April 15 press release.

In the study of 43 patients with advanced tumors not eligible for surgery, 26 patients with thyroid cancer, 15 with non-small cell lung cancer, and two with other RET-driven cancers, the overall response rate was 37 percent for RET-driven cancers, with responses of 45 percent for non-small cell lung cancer and 32 percent for thyroid.

“Overall, the data show the precision targeted therapy with next-generation kinase inhibitors can have a powerful impact for patients with RET-driven cancers,” said Dr. Subbiah.

Kinases function as drivers for numerous types of cancer, including mesothelioma. Kinases are involved in the gradual transformation of normal tissue in the lining of the lung into malignant pleural mesothelioma after exposure to asbestos. Various kinase inhibitors have been used to treat mesothelioma and other cancers, but according to Dr. Subbiah, these “earlier generations of multiple kinase inhibitors” have limited success and come with significant side effects.”

Although researchers have made progress in recent years, identifying an effective treatment modality for the fatal mesothelioma remains elusive. Taking a personalized approach to the treatment of mesothelioma by targeting a patient’s unique genetic characteristics, such as the RET biomarker, offers the most effective treatment options.

“By offering a highly selective medicine tailored for this oncogenic driver, we hope this new therapy will enable patients to benefit from the recent advances in genomic profiling that have revolutionized treatment options for patients with kinase-driven diseases.”

Find the results of the study in the April 15 issue of Cancer Discovery.

Fear is a Real Part of a Mesothelioma Diagnosis

• Lisa Hyde-Barrett
• Nurse's Corner

When a doctor tells the patient has been diagnosed with malignant mesothelioma, we sometimes see a paralyzing fear in both patients and their family members.

This past week, at a new patient orientation meeting designed to introduce the support team, give general information regarding mesothelioma, explain what practical supports are available, and to generally reduce a patient’s and the family’s anxiety, the presentation did not seem to be helping one family. By the end of the meeting their fear was still palpable.

Fear, as defined by Merriam-Webster, is “an unpleasant often strong emotion caused by anticipation or awareness of danger.” Researchers have identified  in the literature three major cancer related fears: fear of death, fear of recurrence, fear of stigma.

The fear of death and a cancer diagnosis can be paralyzing. Although, for some, the amount of time further away from the diagnosis the patient gets, fear begins to diminish. The emotional scars that being diagnosed with cancer can inflict, all individual factors, contribute to when a person is able to resume a “new normal life.”

The ‘fear of recurrence’ emotions can also vary in patients, ranging from worry and sleepless nights, to thoughts of suicide. On the positive side, once diagnosed with a recurrence, the person is already more knowledgeable about their disease, able to navigate the healthcare system, and know that it is possible to return to a “new normal.”

Cancer diagnosis can still carry a stigma. Changes in the dynamics of family relationships, role changes in a relationship, ability or inability to return to work can all stigmatize a person with a cancer diagnosis. The stigma can be in how the patient sees himself, or how he thinks others perceive him.

Fear is a four-letter word, as is hope. When facing a serious cancer diagnosis like malignant mesothelioma, the most important thing is to not lose hope.

At the conclusion of the meeting while speaking with this family, they were able to verbalize their fears.  The patient was elderly, the onset had been abrupt, and they had heard that surgery was very “rough.” They were not willing or ready to lose their husband and father to this disease.  Once their fears were acknowledged, we were able to remind the patient and family of the facts. His general overall physical fitness, his early diagnosis, localized disease, type of mesothelioma,  and a warm caring family to help him through and around obstacles in the future, were all positives in their journey with mesothelioma.

Balancing fear and allowing for hope is an important part in the treatment of malignant mesothelioma.

Mesothelioma Community Ponders Significance of Newly Discovered Organ

• Nancy Meredith
• Featured News

For years, researchers have struggled to find the reason mesothelioma and other cancers aggressively grow and spread throughout the body. Primarily, the focus has been on the spread of cancer cells through the bloodstream. Now, researchers report they have discovered a new organ that could be responsible for unbridled cancer growth.

In a recent discovery, researchers from New York University’s School of Medicine report they found a new organ that sits one layer below the skin. The mesh-like interstitium, as it has been named, is a  layer of interstitial tissue filled with and surrounded by interstitial fluid. Although they have known about the tissue and fluid, the way the tissue had been examined in the past, with the fluid removed, it was seen as just another piece of tissue.

According to a March 27 article in the CNN, when the researchers kept the tissue alive and examined it more closely, they found that it has a unitary structure with compartments filled with fluids. The researchers surmised some of the fluid is lymph fluid, of the lymphatic system that supports immunity, and flows through the  body through these interconnected compartments. The flow of fluids can also spread diseases, including cancer.

Because the interstitium has a single structure and a single function, Neil Theise, a professor at NYU’s School of Medicine and author on the paper, says it meets the criterium to be considered an organ. The interstitium is throughout the body, like the skin, but he says, it is even larger than the skin.

Thiese believes the interstitium could change the way doctors think about cancer and other diseases. “It’s been known that when cancer invades this layer, either in the skin or in the viscera, that’s when it first becomes able to spread outside the organ of where it arose,” said Theise.

“This discovery will open up new research pathways for inflammation and cancer progression,” added Dr. Petros Constantinos Benias, co-lead author of the study, a member of the Feinstein Institute and an assistant professor at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell Health.

Mesothelioma is the signature cancer of asbestos caused by inflammation from inhaling the microscopic fibers. The cancer can spread rapidly, and treatments are focused on trying to halt metastasis. This new understanding of how the cancer may travel through the interstitium could lead to a new approach for halting cancer growth.

Much more research still needs to be conducted, but the team suggests that whereas currently blood and tissue samples are used  as a diagnostic tool, interstitial fluids may be effective.

“We are optimistic that with what we learned, we’ll soon be able to study and target the interstitial space for diagnosis of disease and perhaps for novel personalized treatments,” said Dr. Benias.

Find the study in the March 27 issue of Scientific Reports.