Mesothelioma Help Cancer News
Turn to the Mesothelioma Community to Find Others Who Have Walked in Your Shoes
Sometimes the journey with mesothelioma can be an isolating experience, at these times it is important to reach out to the mesothelioma community. All of us have our own stories to share – patients, family members, healthcare providers, friends – we all have our own perspective, our own experiences. By sharing our experiences we help those who are struggling see a light in the tunnel.
This week, a patient who was contemplating a clinical trial but had not yet committed because he was worried about the side effects, was put in touch with someone who had been in the same trial. He talked to someone who had been where he was, and found out that the person is doing well. The participant was able to re-assure him that he had not suffered the side effects that he was worried about. Although there is no guarantee that he will be as lucky and not experience the side effects, he was still comforted by talking to someone who had walked before him.
The importance of belonging to a community- of belonging to something bigger than ourselves- is a basic human need. As humans, we need to belong. No patient chooses to belong to the mesothelioma community, but still he is comforted by it.
No man is an island entire of itself; every man is a piece of the continent, a part of the main… ~ John Donne
There are many ways to stay connected today. Social media is an important part of life. We can stay connected with each other through Facebook, Twitter, Instagram, and email. Some patients and caregivers have the opportunity to put a face to a name by meeting some of the leading researchers, and long term survivors, at an upcoming conference to be held on Sept. 26, Mesothelioma Awareness Day, in New York City.
The 2015 New York Regional Conference on Malignant Mesothelioma is a collaborative effort between the Mesothelioma Applied Research Foundation and Memorial Sloan Kettering Cancer Center. See The Meso Foundation for more information.
Research is how mesothelioma is going to be cured. Hearing about progress, from the researchers and hearing about the clinical trials that are ongoing also helps to strengthen the bond of community. Join the mesothelioma community and learn about the latest research, reach out and find some support, and make some new friends!
If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].
House Votes to Cut VA Workplace Protections Amidst Budget Shortfall
The House voted this week to make it easier to fire ineffective Department of Veterans Affairs (VA) employees, a measure that White House officials threatened to veto. Meanwhile, a plan to reallocate funds from the Veterans Choice program to fund a VA budget gap moved closer to fruition with an amendment tucked inside a highway spending bill.
It’s been a tough year for the Department of Veteran Affairs. Congress passed a $16.3 billion reform law last summer to shore up a scandal over long patient wait times and a VA cover-up of them, but problems persist. A June report indicated that, compared to a year ago, wait times for appointments longer than 30 days are up 50 percent. The department has fired practically no one despite receiving Congressional authority to more easily let go underperforming VA workers. And just weeks before the fiscal year ends, the VA announced that they have a $2.6 billion budget shortfall.
VA Secretary McDonald says that the shortfall is the result of increased demand for VA services, including expensive hepatitis C treatments. To close the gap, he wants to move funds from the Veterans Choice program, which provides funding for vets to see a private doctor if they cannot secure a VA appointment within 30 days or live more than 40 miles from a VA facility. The VA claims that hospital closures could occur if the funding gap is not closed.
House Veterans Affairs committee chair Jeff Miller reluctantly agrees with McDonald’s plan and sponsored an amendment to divert $3.35 billion from the Choice Program, according to ABC News. But as he explained, some veterans could suffer as a result.
https://abcnews.go.com/Politics/wireStory/emergency-bill-fund-veterans-affairs-department-32742493
“This is going to negatively impact the longevity of the Choice Program that we worked so hard last year to pass and have the president sign into law, that gives the veterans the opportunity to choose where they get their health care and when they get their healthcare,” said Miller.
The Choice Program is slated to run through august 2017 or until its $10 billion is used up.
The same legislation that created the Choice Program also made it easier to fire senior VA executives linked to scandals or found to be underperforming. Only a handful of administrators, however, have been fired. Around 190 lower-level workers associated with the scandal of last summer have faced disciplinary action, but only a few have been fired.
Critics, according to the Military Times, allege that the department is disinclined to fire workers due to complex federal labor rules. In response, House Republicans passed rules this week that shorten fired or demoted workers’ appeals process and limit paid worker suspensions.
https://www.militarytimes.com/story/military/capitol-hill/2015/07/29/house-new-va-reforms/30845137/
Rep. Jeff Miller, who sponsored the VA Accountability Act of 2015, said that, “Bad employees mean bad customer service. If we truly want our veterans to have the very best care and services, status quo is no longer acceptable.”
Rep. Donna Miller (D-MD) called the bill an attempt at “union busting,” while White House officials publicly threatened a veto, saying that the bill could “have a significant impact on VA’s ability to retain and recruit qualified professionals and may result in a loss of qualified and capable staff to other government agencies or the private sector.”
Senate Republicans are expected to take up the measure after their August recess.
Veterans suffering from asbestos disease who have questions about VA compensation or legal questions related to their illness should contact Belluck & Fox, LLP for a free consultation.
Vets can also use our veterans benefits tool to find out whether they qualify for VA financial assistance.
Keep Planning, But Seize the Day When Dealing with Mesothelioma
I am a planner – down to the last little detail. If you can anticipate it, I try to plan for it. When Dad was diagnosed with pleural mesothelioma, all my plans went out the window. Your life and its direction all have to veer toward this awful disease. You realize that things have to change. No one plans on getting mesothelioma. No one plans to alter their lifestyle so completely around good days and bad days.
We learned quickly that we could still make plans, but that they were always subject to change. Dad never wanted to change them, but sometimes, there was no way around it. Learning to be flexible was difficult for me, but it was completely understandable. Dad had to come first.
We continued making plans, looking toward the future. We planned get-togethers, holidays, and birthdays. We looked forward to the next time we would all be together; going out to dinner or to hear Dad play with his band were high on our priority list. Time took on a whole new meaning.
Looking back now, I realize that most of the time, the best things in life are unplanned. Some of the best memories I have with Dad were those quiet, unassuming moments where we would end up doing something silly, laughing uncontrollably. The most meaningful conversations were about nothing, and the greatest trips were those down memory lane.
Living life fully and in the moment is so special, and I learned this valuable lesson during my Dad’s battle with mesothelioma. Never take one second for granted and give your whole self to everything that you do. Plan for the future, but don’t let those plans stand in the way of something greater that God has planned for you. Just live.
Know more about Mesothelioma and how you can deal with it.
Collaboration Key to Breakthroughs in Mesothelioma Treatment
As we celebrate our freedom as a country, we also celebrate the freedom we have with our medical choices. Twenty years ago, if you were diagnosed with mesothelioma, you were told to go home and get your affairs in order. Before the internet was commonplace, before mesothelioma academic research programs were established, your choices were limited. Twenty years ago there were no dedicated mesothelioma centers; no Mesothelioma Applied Research Foundation.
Now, we live in a time where researchers have dedicated their professional lives to improving the treatment and to creating breakthroughs for a cure for mesothelioma. Some of the recent news of promising clinical trials and research is indicative of how far the war against mesothelioma has come.
Across the country and throughout the world there is collaboration among researchers, clinical trials, and professional organizations, working together to advance the cause. When new discoveries are revealed it is often through this collaboration, and through multi-centered clinical trials that they are able to bring potential new drugs to mesothelioma patients.
One example of international cooperation that hopefully will lead to lengthening and improving the lives of patients diagnosed with mesothelioma is the COMMAND study. The study is sponsored by Verastem, a clinical stage biopharmaceutical company. The focus of Verastem is on the discovery and development of drugs to treat cancer by the targeted killing of cancer stem cells.
It is thought that cancer stem cells are an underlying cause of tumor recurrence and metastasis. The study is using the drug VS-6063 with pleural mesothelioma patients as part of a clinical trial. The clinical trial is currently listed as a phase 2, randomized, double-blind placebo, controlled, multicenter study. It is available in 67 study locations across the world. For more information on this study see ClinicalTrials.gov.
Continued co-operation will hopefully lead to a cure and freedom worldwide from this devastating disease.
If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].
Know more about Mesothelioma and how you can deal with it.
Facing the Fear that Comes with a Mesothelioma Diagnosis
Fear is a unique emotion. It can be crippling or liberating. It can drive you to do better, or it can inhibit all progress. It can bring families together and unite them against a disease, or it can isolate patients with depression and anxiety. As a health care provider, I have seen this emotion take many forms.
According to researchers, there are three major cancer-related fears: the fear of death, the fear of recurrence, and the fear of stigma, which is the fear of being different, being treated differently and being thought of differently.
Knowing about fear, what triggers it in you, and why you react the way you do can help you deal with it. One mesothelioma patient described to me the sleepless nights she faces leading to her yearly check-up. Every possible scenario goes through her head, she is sure that she will be admitted to the hospital and suffer a long painful, debilitating death, far away from family and friends. When this does not happen she is able to put her fears aside until the next check up. What helps her get through this? She has started writing a journal and reading what she has written in the past. This has helped her realize she has been down this road before and come out okay on the other side.
I recently received a phone call from a patient’s wife, whose husband had a recurrence of his cancer. When her husband was diagnosed their world was, understandably, shattered. They had gone through his treatments and had reached a “new normal” in their lives. Although upset about the recurrence, they both felt they were coping better because of their past experiences from initial diagnosis through all the treatments.
It helps to become an expert on your health and mesothelioma to give you some control over a very frightening time that feels totally uncontrollable. Take the fear and learn about it, recognize it and acknowledge it.
In the past, mesothelioma was seen as a “death sentence.” Even with the progress and the encouraging results that many patients have had, the diagnosis and treatment can lead to changes at work, within your family, and in your daily routine. Not wanting your roles in your life to change can also contribute to fear – fear that you will be treated differently.
Mesothelioma, and any cancer, diagnosis is frightening and scary. Learning what triggers your fear and the basis of it can help you better deal with it. Reach out and get some professional help if needed to help you deal with all you are going through. You are not alone!
If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].
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.
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