Mesothelioma Help Cancer News
Hospice Care Goes Beyond The Mesothelioma Patient
I have written several times about the benefits of hospice for mesothelioma patients and their families. However, it wasn’t until December that I found out first hand just how vital a hospice organization can be when the end of life draws near. My mother-in-law reached out to hospice as my father-in-law became debilitated with pancreatic cancer, and we found that hospice care extends beyond the patient.
Just as with my father-in-law, when a mesothelioma patient no longer responds to a prescribed treatment plan, and the primary caregiver needs support caring for their loved one, turning to a hospice program is one option to explore. One critical point to note is that hospice is not just for the patient – the support is for the entire family.
Mesothelioma is a terminal cancer that may not develop for decades after initial exposure to asbestos. However, once symptoms become apparent, mesothelioma may rapidly progress to cause life-threatening complications. Once a hospice nurse is with the patient, he will be carefully monitored and kept as comfortable as possible while managing the symptoms the mesothelioma patient is experiencing. The caregiver will also feel comforted knowing a care team is by the phone for them 24/7.
Hospice is not a “place” rather it is a concept of care. According to the Hospice Foundation of America, hospice is designed to improve the quality of a patient’s last days by offering comfort and dignity. In addition, hospice care neither prolongs life nor hastens death. However, it does allow for patients to remain in their own home surrounded by their loved ones.
As soon as hospice is in place, a personalized plan is established and a team of professionals including nurses, chaplains, nursing assistants, social workers and bereavement counselors will be assigned. And they do not waste any time becoming part of your family and ensuring everyone’s needs are addressed. Of course, the patient is first and foremost and the care team will provide care for symptoms such as pain, nausea, vomiting, shortness of breath and restlessness; medication management; and personal care including bathing and light housekeeping. They may also provide a hospital bed and any other items needed for comfort and medical support.
The team offers a partnership in caring for your loved one. Not only do they provide the medical support needed, but they also help the caregiver by providing a thorough explanation of what is going on and what to expect, a friendly person to talk to, and they will sit with the patient so the caregiver can go out for groceries, lunch or to run other errands that get ignored while providing 24-hour care. The hospice also offers chaplain services and spiritual care.
The National Hospice and Palliative Care Organization estimates that there are over 5,500 hospice programs in the United States caring for nearly 1.5 million patients each year. Sixty-six percent of the hospice care is provided in the patient’s home, family member’s home or in nursing homes. The median length of time for hospice care is less than 19 days.
Hospice care doesn’t end when the patient passes away. The hospice team will help with contacting appropriate parties, arranging funeral services, and conducting the service if requested. Although no one wants to think of the end of life, the multi-disciplinary hospice team can help ease the burden and help you in the difficult transition.
Mesothelioma Researchers Look at “Super Responders”
Mesothelioma is a mysterious disease with many questions surrounding it. One such question that continues to arise is, “Why isn’t there a cure yet?” It seems for many clinical trials, just when one patient responds exceptionally well and the team gets excited with the results, the majority of patients fail to respond the same way.
The question of why some patients experience dramatic results and others do not has continued to puzzle researchers and has stymied their ability to find a cure. Now, they are digging deeper into finding the reason for the dramatic differences in responses to the same treatment for the same diagnosis of cancer. Why do a few patients respond so well to one treatment, but the majority do not respond? The National Cancer Institute classifies these patients as “exceptional responders.” Other terms used for this group of patients is “super responders” or “outliers.”
Cancer researchers have long noted this group of patients that have responded well when most have received little or no benefit from the same therapy. Now, with genome sequencing, they can target the gene mutations for the patients that respond to the treatment and pinpoint other patients that will possibly benefit.
However, not all patients in the US receive genetic testing for personalized treatment to guide their care. One survey in 2012 of close to 400 medical oncologists showed that they tested for mutation in the EGFR gene in less than 40% of advanced non-squamous, non small cell lung cancer. The EGFR mutation has been found in certain populations of lung cancer and mesothelioma patients.
The NCI is leading an initiative to learn more about why some patients respond exceptionally well to cancer treatments that generally aren’t as effective for other people with the same cancer.
Progress is being made in cancer research. It continues to take time and money. To put yourself in the best position to possibly benefit from research, make sure to go to a medical center that specializes in mesothelioma and is actively researching for a cure.
If you are interested in finding out more about the super responder initiative, or if you have any questions about any aspect of your mesothelioma care, please email me at [email protected].
Don’t Forget the Spirit of Christmas and the Hope It Brings
It’s hard to believe that 2014 is already coming to a close. This year saw my first full year without my Dad. As we come to the Christmas season, it is, once again, a time to reflect on the memories and love that he left behind.
Last year, the pain of losing my father was excruciatingly fresh. I was still in shock and unsure about how I would carry on without having him here with me. Now, the pain still remains and I often question how it is possible to live a “normal” life after losing Dad, but this year I realize that I have had some time to reflect on the entire journey that he had with mesothelioma.
Dad’s mesothelioma story is one of sadness, followed by a miracle and joy. It is a tale riddled with highs and lows, but always full of love and hope. This love and hope is what Christmas is all about. As we celebrate the birth of Jesus, it is important to also hold our loved ones close and remember all of the good that is in this world. It is easy to get caught up in the commercial side of the season, but remember the true reason.
Dad was so much more than this terrible disease. He embodied the Christmas spirit every day of his life. Spreading happiness, being generous, and loving with his whole heart, my father lived this message. Enjoy this beautiful time of year and remember that Jesus is the reason for the season. Merry Christmas!
Know more about Mesothelioma and how you can deal with it.
Mesothelin Combined with a MiRNA May Be Effective Diagnostic Biomarker for Mesothelioma
German researchers have shown that a combination of protein and nucleic acid biomarkers improves the diagnostic performance of a blood-based screening test for mesothelioma compared to the use of an individual biomarker from a single molecular class.
Malignant mesothelioma, an aggressive asbestos-caused cancer with a long latency period of 40 or more years, has a low median survival rate of 9-13 months from diagnosis due to the fact that symptoms typically only occur during late stages of the disease. Diagnosis at early stages has the potential to improve therapy and survival, but the development of a reliable blood test has been hindered by the low diagnostic performance of most prominent biomarker to date for mesothelioma—mesothelin.
The biomarker mesothelin, according to the authors of a new study published online by PLUS ONE, is characterized by high specificity (89%) but low sensitivity (58%). That is, in patients with mesothelioma, blood tests that use mesothelin as a biomarker generate false positives 11% of the time and false negatives 42% of the time. The AUC (a measure of diagnostic accuracy) of mesothelin is 0.85.
By combining the protein biomarker mesothelin with the microRNA (miRNA) biomarker miR-103a-3p, the researchers improved the overall diagnostic performance of a blood-based biomarker for mesothelioma to an AUC of 0.93.
“In conclusion,” writer the authors, “we showed that the combination of mesothelin and miR-103a-3p improved the diagnostic performance of a blood-based screening test, resulting in higher sensitivity and specificity to detect malignant mesothelioma.”
Malignant mesothelioma is a form of cancer that occurs in the thin layer of tissue that surrounds the lungs, abdomen and heart. Asbestos exposure in the only proven cause of mesothelioma.
Up to 3,000 new cases of the disease are diagnosed in the United States each year, with 85,000 U.S. cases expected until 2054.
Anyone who was exposed to asbestos in the past—or who worked in occupations at risk for exposure—should be aware of mesothelioma symptoms, which include chest or abdominal pain, shortness of breath, and unusual lumps in affected areas.
Because early diagnosis is the key to a favorable prognosis, schedule a doctor visit immediately if you have symptoms that might indicate mesothelioma.
Know more about Mesothelioma and how you can deal with it.
Sources :
- biomarker
http://www.cancer.gov/dictionary?cdrid=45618 - (new study published online by) PLUS ONE
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0114483
Daughter Reflects on the Memories With Her Father Lost to Mesothelioma
A few short weeks ago, my husband and I were blessed to become parents to a healthy and beautiful baby girl. It’s amazing the love that a parent feels for a child (and a child for a parent, for that matter). A mother and father will do anything they can to protect their little one. This made me think about the relationship I had with my Dad and how it impacted his journey with mesothelioma.
Dad and I had a very close relationship; I always knew that I could talk to him about anything. His kindness and amazing ability to give advice always amazed me. When he was diagnosed, we talked about the disease and what the next steps were. He talked about everything being in God’s hands and that we needed to put all our trust in Him. Once he was free of the disease, he told me that prior to this milestone, he felt awful. We discussed how his chemotherapy treatment made him feel – it seemed like we mulled everything over.
As difficult as it may seem, he even took the time to discuss his final wishes.
Now, I wonder if he was holding back to protect me. Did he really tell me everything, or did he keep a little in to keep me from worrying like I always do? Was he feeling as good as he said, or did he put on a braver face for my benefit? I guess these are questions that I will never know the answer to, but regardless, even if he did hold back, I know that it was done out of pure love.
I miss my Dad every single moment of the day, but I take comfort in knowing, and now understanding, the amount of love that he had for me and my family. I pray that I can be half the parent that he was… then, I’ll be doing pretty great.
Know more about Mesothelioma and how you can deal with it.
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.
Download Now