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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].

Statistics for Cancer Patients

Mesothelioma Community Eyes PD-L1 Inhibitor That Shows “Statistically Significant Survival” for Lung Cancer Patients

The mesothelioma community has been on cloud nine this year with clinical trials that have heralded good news across the globe. Immunotherapy treatments have moved into the spotlight, and it seems that instead of “if” the treatments become available to mesothelioma patients, it is “when.” Now, one more potential immunotherapy treatment for lung cancer and mesothelioma patients is on the horizon.

Genentech, a biotechnology company focused on developing treatments for patients with serious or life-threatening medical conditions, and a member of the Roche group, reported in a Sept. 26 press release 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). Atezolizumab 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.

“Results from both of our studies in non-small cell lung cancer showed that measuring PD-L1 may help identify people most likely to respond to atezolizumab, and the majority of responses continued when these data were assessed,” said Sandra Horning, M.D., chief medical officer and head of Global Product Development.

Atezolizumab, an inhibitor of cell programmed death ligand 1 (PDL1), has received breakthrough designation from the U.S. Food and Drug Administration for use in the treatment of NSCLC in patients whose tumors have high expression of PDL1 and whose disease worsened during or after standard treatments.

In October, the FDA approved Keytruda for advanced NSCLC. Keytruda, marketed by Merck, is also a PD-L1 inhibitor that has been shown to be effective in controlling mesothelioma tumors in three-fourths of patients. Mavis Nye of England, a six-year mesothelioma survivor, is virtually cancer free after over one year of Keytruda treatments during a clinical trial. (Keytruda is still known as MK-3475 in the UK.) And Lou Williams of Australia who has been battling mesothelioma for over 13 years was given new life when she began Keytruda.

Breakthrough Therapy designation from the FDA is a process designed to expedite the development and review of drugs that are intended to treat a serious condition and preliminary clinical evidence indicates that the drug may demonstrate substantial improvement over available therapy on a clinically significant endpoint(s).

The two atezolizumab studies are POPLAR, a clinical trial comparing the efficacy of atezolizumab with docetaxel chemotherapy, and the BIRCH study testing the efficacy of atezolizumab in PD-L1 positive patients.

The results of the studies were reported in Vienna, Austria at the European Cancer Congress 2015 held Sept. 25 – 29.

Genentech reports the results of the POPLAR study “showed a statistically significant survival benefit compared to chemotherapy” in patients with recurrent NSCLC with medium and high levels of PD-L1. The patients lived 7.7 months longer than those who received docetaxel chemotherapy.

The company reports that in the BIRCH trial, “atezolizumab shrank tumors (objective response rate, ORR) in up to 27 percent (p=0.0001) of people whose disease had progressed on prior medicines and also expressed the highest levels of PD-L1.”

“Higher PDL1 expression correlates with greater response rates and could be used to identify patient for treatment,” said lead author Benjamin Besse, MD, from the Gustave Roussy Institute, Villejuif, France, during the presentation.

For the nearly 3,000 Americans diagnosed with mesothelioma each year, every breakthrough is critical. Although the scientists are not promising a cure with the new drug, patients are hopeful the drug will bring an increased survival and a nearly uninterrupted lifestyle for the patients undergoing treatment.

  • See the Sept. 27 MedScape article for more details on the results of the two trials.
  • See NCT01903993 on ClinicalTrials.gov to find out more about the POPLAR clinical trial.
    https://clinicaltrials.gov/ct2/show/study/NCT01903993?term=POPLAR&rank=1#locn
  • See NCT02031458 on ClinicalTrials.gov to find out more about the BIRCH clinical trial.
    https://clinicaltrials.gov/ct2/show/NCT02031458?term=BIRCH+MPDL3280A&rank=1

Sources:

  • Atezolizumab
    https://www.gene.com/media/press-releases/14607/2015-09-26/two-positive-studies-of-genentechs-inves
  • European Cancer Congress 2015
    http://www.esmo.org/Conferences/Past-Conferences/European-Cancer-Congress-2015

Advice to Mesothelioma Caregivers: Trust in Others

Watching someone you care about struggle with a mesothelioma diagnosis is an unbearable situation. You, yourself, are probably having a hard time as well, but feel as though you have to keep it all inside. Trust me when I say that this won’t help. It won’t make you a better caregiver, it won’t make you more supportive, and it won’t change your new reality. It is important to have some sort of outlet to express your feelings also.

By making sure that you are being taken care of, you will be more capable of helping the person you love. Find trusted friends and have an open and honest conversation. If you like to exercise, go for a long walk or jog. If art is more your speed, go to a museum or a class. You have to find what outlet works best for you individually. If you’re not sure what this may be, try something brand new! You might find joy in the most unexpected activities.

Also, it is very important to stay, or get, in touch with your faith. It will be the stronghold that carries you through this, and any tough times that you encounter throughout your life. Remember, it’s ok to ask for help. There are many support groups and organizations out there that will be able to assist you. The key is to find out what you need, and act upon this realization.

Mesothelioma Warrior _ Advocate Lou Williams

The Magic of the Holidays is Carried on in the Next Generation

This time of year can be quite trying for someone who has lost a loved one to mesothelioma. From Thanksgiving to the New Year, it is a time when family and friends get together to celebrate the beauty and love of the holidays. At times, there are treasured stories retold of those we mourn; then, there are the times when we feel an emptiness as we gaze at the chair that used to be occupied by someone we cared for deeply.

For me personally, that time of grief really begins in October at the anniversary of my Dad’s passing. It is a time when I look back fondly on all of our memories, but then I realize quickly that the first weeks without him were largely over the most festive times of the year. We went through the motions that first year, trying our best to carry on our same customs like we know Dad would have wanted. It was difficult, but we somehow muddled through. Now, we have had some time to “adjust” and still try to keep things as traditional as possible.

Last year, with the addition of my daughter, things changed again; this time, for the better. She brings so much joy and light to the lives of my family and friends, that it’s not hard to realize that she takes after her grandfather. My Dad was always the one who brought everyone together; now, it seems as though the torch has been passed on to her. Seeing her makes me feel as though Dad is still with me in a very real way, making Christmastime magical all over again.

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Free Mesothelioma Patient & Treatment Guide

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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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