It is now 2018 and as years pass, medical information about Mesothelioma is becoming more easily accessible to the public. Like anything, some websites are more reliable than others and it is unfortunately up to you to weed out the ones that carry more validity. Websites that are most accurate are written from people who are currently and actively caring for patients who have Mesothelioma. With that said, there is not that much available on these websites about emotions. Emotions are a huge part of the disease and recovery.
As we write blogs, frequently they are based on patient’s experience and medical experience. Following blogs like this one can allow you to read and inform yourself at your own pace. Many patient’s blog their own experience whether it be how their diagnosis was initiated, how they are handling chemotherapy, side effects from drugs or other issues. This can help with building a community of support. Despite Mesothelioma being a rare disease, the emotions and feelings are far from uncommon. Often this can help if you are feeling alone, scared or depressed. No one knows better than a fellow Mesothelioma patient. Your loved ones are doing everything for you but it is not the same as speaking with another person experiencing what you are enduring.
Some patients get through their journey by keeping a journal of their thoughts and emotions. Some people do it just for themselves and others have people follow them. Whatever the reason you choose, whether your thoughts become public or private it may just help you or someone else.
Many patients with different types of cancer blog as well. You don’t have to strictly follow Mesothelioma patients. Think about who and what you choose to follow as a guide. Take what you like and leave the rest behind.
Whenever one starts or stops blogging it is usually for a reason. Often it is the easiest way to keep family and friends involved about the person’s progress. It allows patients to say it once and not have to field numerous phone calls or say things numerous times. Caring Bridge is a familiar web site to many where daily journaling can be formulated and readers can post their love and concern for you.
We all know what kind of illness this is and how much it can take out of you and your family. Like most illnesses, it can be mentally draining. If you try one of these tactics possibly it will give you some mental relief.
– Lisa
Being diagnosed with a rare disease often offers challenges that might seem insurmountable to some. Patients and family members who have a loved one diagnosed with malignant mesothelioma know of the challenges that are faced with the diagnosis, access to treatment and decisions regarding the right treatment and the timing of when to have the treatment.
The drug Offev or Nintedanib, also known as BIBF 1120, is currently showing promise in treating patients with malignant pleural mesothelioma. Nintedanib is classified as an oral triple angiokinase inhibitor. Nintedanib targets receptors that play a role in tumor growth and development of metastasis in malignant pleural mesothelioma. The cancer cells release growth factors, bind to activate growth factor. In order for the tumor to spread or metastasize angiogenesis takes place. Angiogenesis is blood vessel formation. The tumor needs new blood vessels to grow. Nintedanib uses anti-angiogenic strategy that is different from other approved treatments. Nintedanib is a small molecule that targets three receptors known to be involved in angiogenesis.
We encourage participation in clinical trials for research leading to a cure for mesothelioma. It is known that nationally the statistics for participation in adult cancer trials is between 3-5% of adults who have a cancer diagnosis.
We all know how important clinical trials are. The FDA has approved Yescarta (axicabtagene ciloleucel) Although this is not directly affecting Mesothelioma yet, we believe there is hope. Yescarta is the newest treatment for adult patients with certain types of large B- cell lymphomas whose first line treatments have failed, or relapsed. This is the second gene therapy approved by the FDA. This approval came after a multicenter clinical trial of more than 100 adults who had relapsed or did not respond to initial treatment for large B cell lymphoma.
A patient recently diagnosed with malignant mesothelioma asked what he thought was a simple question, “how much time do I have?” As the mesothelioma expert answered his question, it was not what he expected. He had read the statistics and the statistics told him an average number and he was expecting to hear a number close to it. He had read the average time that patients diagnosed with mesothelioma live.
