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Month: December 2015

Importance of Communicating to a Loved One with Mesothelioma

There are a few things that struck me this week as I was taking care of a mesothelioma patient. I always learn something from every patient. The patient, who had surgery was doing very well, and his wife came to visit him often. But, she was concerned about another family she had met while her husband was in the hospital.

The other patient was not doing as well, and he and his wife were from out of state. His wife was alone, although they had grown children who were in phone contact, they both told them not to come. At the beginning this plan was working for them, but as time went on, the wife needed some support and relief.

With the holidays approaching, they were reluctant to “bother” their children. Mesothelioma is a very difficult disease and treatment regimen to endure alone. To be far from home and to have this on your shoulders is a lot. Family and friends want to do the right thing, but often they don’t want to overstep their boundaries. People want to respect the patients and their families privacy.

In different situations when the parents did call for help, I have heard, “Why didn’t you call me sooner?” “We wanted to come, but you didn’t want us to.” Often, in the caregiver’s and patient’s eyes asking for help and support is an admission that things are not going well. What I have seen is that some caregivers and  patients are not going to ask for anything, regardless of the situation.

As a friend or family member, keep this in mind. If you are calling and getting the same answer that they are fine and do not need anything, if this does not feel right, if your instinct is telling you something else, listen to it. Ask yourself this one question: “At what point are they going to ask me to come?” You might be surprised with the answer – it very well could be never. That answer is out of love, and is not to exclude you. They fear burdening you and upsetting your busy life. They also feel they should be able to handle this by themselves.

If you think you want to do something, just do it. Patients and caregivers don’t want to bother anyone, and sometimes they do not even know what they need. Often it can be just a warm smile, a hug or just a presence. Although you think you won’t make a difference, you have no idea how a small gesture will make someone feel. It is hard to handle mesothelioma alone, regardless of the holidays.

Please, if your instinct tells you to do something large or small, listen to it!

Mesothelioma Stories of 2017

2015 Year in Review: Top Mesothelioma Stories

Another year is coming to a close, but for those in the mesothelioma community it is the end of another year without a cure. Unfortunately, once again, Mesothelioma Help lost a “Faces of Mesothelioma” friend to mesothelioma during the year. David Stetler, whose daughter Amanda chronicled his ups and downs during his battle with the disease, passed away on March 16 leaving many wondering if this needless suffering will ever end.

But, there has been some good news from researchers and the medical community. While they may not have brought an end to the asbestos cancer, there are many treatments in clinical trials, promising leads still in the lab, and several approved treatments now available to patients that show promise for effectively fighting back the relentless cancer.

Every year Mesothelioma Help reports on the top mesothelioma stories of the year, and below we highlight some of our most important stories of 2015.

Number One MesotheliomaHelp Story of 2015

Once again, Mavis Nye of England, who has been living with mesothelioma for six years, and has been a staunch advocate for herself and for all mesothelioma patients, takes the top spot for successfully fighting mesothelioma in 2015.

In 2014, Mavis enrolled in the MK-3475 clinical trial being run at The Royal Marsden, a world-leading cancer center in the UK. MK-3475 is known as Keytruda in the U.S. where it has been approved for the treatment of advanced lung cancer and melanoma.

Mavis was one of the first mesothelioma patients in the UK to participate in the trial designed to test the efficacy of the drug, developed by Merck, in suppressing the PD-L1 biomarker found in cancer cells. PD-L1, or programmed death-ligand 1, is a protein that has been shown to play a role in suppressing the immune system during cancer and other diseases.

Mavis announced in her Nov. 17 blog that her doctors told her during the reading of her scan results that she no longer has any active mesothelioma in her tumors. December 16 marked her 40th treatment with MK-3475. She will continue on the drug through the end of the trial, May 2016.

Patients across the U.S. are clamoring for Keytruda after 91-year-old, former president Jimmy Carter announced in December the drug helped him beat melanoma, that had metastasized to his liver and brain.

We hope all mesothelioma patients see the same results as Mavis!

PD-L1 Inhibitors in the Spotlight. In addition to Keytruda, the number one success story of 2015,  various other PD-L1 inhibitors have also seen success in fighting back cancers.

Opdivo: Opdivo, developed by Bristol-Myers Squibb, is another FDA-approved lung cancer drug that works by blocking the PD-L1 protein and activating the immune system. Except for the dosing differences, Opdivo and Keytruda are comparable, according to reports.

This is yet another example of the advances we are making in the treatment of lung cancer using the approach of targeting specific tumor genes and their mutations.”

Genentech: The company reports that its investigational, anti-PDL1,  immunotherapy drug atezolizumab (previously known as MPDL3280A), has seen positive results in two Phase II clinical trials for non-small cell lung cancer patients (NSCLC). The results “showed a statistically significant survival benefit compared to chemotherapy” in patients with recurrent NSCLC with medium and high levels of PD-L1.

FDA Approvals. The U.S. Food and Drug Administration has been on a roll this year in approving anti-cancer drugs. While none of the approvals are specific to mesothelioma, those approved for lung cancer care open new doors for treatment of mesothelioma patients.

  • The FDA announced last month that it has approved Portrazza (necitumumab) to be administered in combination with the chemotherapy drugs gemcitabine and cisplatin to treat patients with advanced squamous non-small cell lung cancer who have not previously received cancer treatment. The approval, represents progress for patients diagnosed with metastatic squamous non-small cell lung cancer, as each new therapy advances cancer care and gives patients hope for improved outcomes.”
  • The FDA granted accelerated approval for the anti-cancer drug Tagrisso (osimertinib) to treat patients with advanced NSCLC. According to AstraZeneca, the maker of Tagrisso, also known as AZD9291, the drug is targeted to patients whose tumors express the EGFR mutation (T790M) and whose disease has gotten worse after treatment with other EGFR-blocking therapy. Tagrisso is the only approved medicine indicated for NSCLC patients with the EGFR T790M mutation. Researchers have found that over 50% of pleural mesothelioma patients express the EGFR protein.
  • On Dec. 11, the FDA announced approval of Alecensa (alectinib) for the treatment of ALK-positive NSCLC in patients who have progressed on or are intolerant to Xalkori (crizotinib). Alecensa, from Genentech, is an oral medication that blocks the activity of the ALK protein, which may prevent cancer cells from growing and spreading.

Immunotherapy. With Keytruda leading the news, developments in the field of immunotherapy for the treatment of mesothelioma have made this year particularly newsworthy.

“Immunotherapy is a new class of cancer treatment that works to harness the innate powers of the immune system to fight cancer,” according to the Cancer Research Institute. Recharging the body’s own defense mechanism, the immune system, immunotherapy therapies may hold greater potential than current treatment approaches:

  • To fight cancer more powerfully,
  • To offer longer-term protection against the disease,
  • To come with fewer side effects, and,
  • To benefit more patients with more cancer types.

MesotheliomaHelp will continue to bring articles focused on immunotherapy to our readers.

(Note: According to medical reports, immunotherapy drugs like Keytruda and Opdivo help a minority of patients, but those who respond to the treatment often do extremely well.)

COMMAND Trial Stops Enrollment. Last year the COMMAND (Control Of Mesothelioma with MAiNtenance Defactinib) trial was seen as one of the bright spots in the future of mesothelioma treatment. Sadly, this year, the clinical trial was halted after a data safety monitoring board found that VS-6063, when given to mesothelioma patients as part of the COMMAND (Control Of Mesothelioma with MAiNtenance Defactinib) trial, did not produce “a sufficient level of efficacy” to justify continuation.

About Mesothelioma

Mesothelioma is a deadly cancer of the lungs, heart or abdomen, caused by past exposure to asbestos. Mesothelioma has a long latency period where those exposed to asbestos may not exhibit symptoms for nearly 60 years after exposure. Mesothelioma can be treated with surgery, chemotherapy and radiation, however, the likelihood of recurrence of the cancer is high. There is no cure for mesothelioma.

Know more about Mesothelioma and how you can deal with it.

Mesothelioma Survivor

The Waiting Doesn’t Have to be the Hardest Part

Waiting for something to happen, whether you anticipate good news or bad, can be excruciating. Children waiting for the holiday feel every moment as if it is forever. They are anticipating  a happy event. On the other side of that, for a mesothelioma patient waiting for lab results, the results of which will determine his or her course of treatment and  next steps, the waiting is also excruciating.

People wait in our health care system for everything. For appointments, for doctors, nurses, phlebotomists, every aspect of care can involve a wait. A 2014 study found the average wait time in a doctor’s office is 20:16 minutes and is only getting longer.

What can you do to pass the time when waiting for an appointment for yourself or a loved one with mesothelioma? In an article by Lynne Eldridge, M.D., titled “Waiting Room Survival Kit- Activities to Combat Boredom,” she suggests instead of focusing on “losing” time, view this time as an opportunity to do something you enjoy- something you wouldn’t ordinarily do. Read a book that you have not had time to, talk with another patient who is also waiting and wants to talk. Bring a friend or family member with you and catch up. In our busy lives, when have you had the time to talk to someone without interruptions for 20 minutes?

Some of her other suggestions include writing a letter, often we have been meaning to do it but don’t have time. Balance your checkbook, work on your taxes, take a nap, make a to-do list, learn more about your portable device features.

Over the years there have been many lasting relationships formed in the waiting room. Patients and families waiting for the doctor in the mesothelioma clinic all have something in common: their journey with mesothelioma. Although I think the average waiting time in mesothelioma clinics is longer than 20 minutes, we have seen bonds that last a lifetime between patients and families.

However long the wait, whatever the reason, please know on the other end, if you are a mesothelioma patient, the team will do their best for you. Save your energy for positive thoughts to fight mesothelioma, possibly with a new supporter you met in the waiting room.

Pneumonia Vaccine - Mesothelioma Patients Caregivers

Your Presence Can Be the Best Present for a Mesothelioma Patient

As Christmas quickly approaches, we often scramble to find the perfect gift to give to our loved ones. When you are considering a present for a person or family dealing with mesothelioma, you may consider your presence also.

Many times, mesothelioma is a lonely road. Even though people come forward offering help and assistance, they may stay away in order to respect privacy or to avoid overwhelming those in the inner-circle. The truth is, the company is often welcome. Of course, call first to be sure that it’s a good day and time, but don’t stay away out of fear. Sure, there may be some people who shy away from guests for various reasons, but there are also some on the opposite end of the spectrum. My Dad was always happy to welcome family and friends, and those are some of his happiest times.

If you are looking for a more tangible gift, feel free to brainstorm, but also, you may just want to ask them if there is something that they would like! There may be something they need that they just haven’t been able to get out to purchase. Also, the person might appreciate a night out for dinner and a movie! Don’t be afraid to offer these types of things, but also don’t be disappointed if they say they would rather stay in. As I always say, allow the patient to dictate the environment around them.

From my family to yours, Merry Christmas! Don’t forget to stop and remember the true reason for the season and spend time with your loved ones. The memories made at this time of year are some that will last forever.

Mesothelioma Nurse Takes on the Inevitable Loss We All Face

The subject of death and dying is a difficult one to deal with. Reality and emotions are difficult to mesh when we have to deal with the loss of loved ones. Regardless of whether the loss was unexpected or we knew it was coming it is always a deep felt loss. A young person dying in a car accident or an older person dying from mesothelioma, the loss is equally felt by families, friends and the entire community.

We all understand that the one certainty in life is that we are all going to die. No one gets a pass on that one. No matter what we do, how we fight, how we prepare, how much we ignore that fact, it will happen. No one gets out alive.

When we are confronted with our own mortality, what we know in our heads, is different than what we know in our hearts. We all know mesothelioma is a deadly disease, but we expect to have some warning that the end is near. Unfortunately, just recently, two mesothelioma patients died unexpectedly.

One of the patients was scheduled to go home from the hospital the next day. He had surgery and had been doing very well when an unexpected complication quickly led to his death. Despite everything being done, everyone’s best efforts, he died.

The other patient had a long complicated course. However, he had had the maximum support and he seemed to have turned the corner. He was feeling better, no pain and he was finally able to go home with his family. He was home for a week, directing how he wanted things done, enjoying his beloved home and family, and he felt good. At the end of the week, he began to have difficulty breathing after he developed another complication. Again, despite the medical team’s best efforts, he died.

Both deaths left their families and the mesothelioma care team devastated. What could have we done differently? Why did it happen? Why now? The families were left questioning their decisions. Was it the best decision to choose this course of treatment? The decisions that they made with their loved ones were magnified and reviewed again and again.

There are no magic answers, no phrases to alleviate the pain and loss that the families are feeling. We do know that every time a mesothelioma patient dies, the mesothelioma team is affected. A review is held, decisions are reviewed, and patients are remembered as people with families and loved ones, not as mesothelioma victims.

Loss also renews the conviction to continue to fight for the mesothelioma victims, continue to work harder towards a cure. Enjoy today for tomorrow is promised to none of us.

If you have any questions regarding your mesothelioma treatment, feel free to email me at [email protected].

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