Questions about mesothelioma? Call 1-800-726-1860

mesothelioma patients

  • This field is for validation purposes and should be left unchanged.

Your message to us will be held in strict confidence. All requests for information by mesothelioma patients and their family members will be answered within 24 hours. Mesothelioma Treatment and Care Guides are sent to mesothelioma patients and families by overnight delivery.

The Importance of Listening to Mesothelioma Patients

As anyone who has ever spent time at a busy hospital knows, your appointment time and the time you are seen are sometimes hours apart. Reality and schedules do not often keep together. Over the years, I have seen many reactions to a delayed appointment and the range of emotions are as varied as the patients. No one likes to wait. Everyone’s time is important. Despite the efforts of many time management consultants, multiple new on time initiatives it remains a problem. One of the root causes of the problem is that you are dealing with people. The procedure that is scheduled for 45 minutes’ turns into an hour when an unexpected finding requires consultation with other experts. Patients are not kept waiting intentionally but it happens. Occasionally the system can work, and at that point it is important to remember why the health care team needs to actively listen to each patient and their individual needs.

It was 1:40 p.m. on a busy Friday afternoon. The next patient was scheduled to be in the room undergoing a palliative procedure that sole purpose was to make her feel better. She had flown in to have the procedure done and had a flight out at 5 p.m. There was eye rolling by some, mumbling by others, but some members of the team took it as a challenge. ” We will make this happen,” the nurse assured the patient. ” You will be in an Uber by 3:30 on the way back to the airport. ” This patient had a biopsy earlier in the week and the results would not be back for another week. She had been fighting cancer for several years and now it had started down an aggressive path. As she told her story from start to finish, it occurred to the nurse that her business-like attitude of not taking no for an answer, was the way she was fighting her cancer. It was not so much that she makes the flight, as it was that she felt you were working with her so she could have some control over a health situation that was quickly spiraling out of control.

The radiologist came in and after some non-invasive testing and comparing of her films could not find the fluid that would magically make her pain go away. After conferring with the patient’s team and lengthy discussions between all the team it was decided that there was not enough fluid to drain, no procedure on this day would make her feel better.

The doctors exited the room, the patient was momentarily flustered, when the nurse offered to page her primary oncologist so that they could discuss the plan going forward. The oncologist immediately called back and discussed with the patient for another 10 minutes the plan. There would be prescriptions to pick up, and a new medication regime as they waited for the biopsy results to come back. The patient was back in control. Now it was 2:45 how was she going to be in an Uber with her new medications by 3:30 as promised?

Gathering her luggage, a wheel chair and a nursing student, the nurse pushed her over to the pharmacy, which involved a series of elevators and bridges, a total of 3 city blocks apart. The pharmacist had received the prescriptions, and was in the process of filling them. The medications were ready at 3:23 p.m. The Uber was called, in the car at 3:29 p.m. Patient on way to airport, in control with a plan, and on time for her flight.

In life, it is often the little things that people help you with that you remember. No one knows the road ahead for any of us, putting yourself out for someone else will not cure her cancer, but it will help her control her journey, and plan and cope for whatever is ahead. Listening is important!

– Ellie

Asking the Mesothelioma Patient: What do You Want to Do?

One of the leading physicians in treating patients with mesothelioma always includes in his first interactions with patients a simple important question to his patients. “What do you want to do?’ It is a non-judgmental question acknowledging the patient has his own thoughts, feelings, and that most importantly the patient oversees what if any treatment choices he makes. This might seem like something that is assumed, a patient seeks out an expert in the field of mesothelioma, he may have traveled a great distance, has a support system that is urging him to do everything he can to stay alive, but he is not sure that the treatment plan is something he wants to go through.

The other day at a conference with two patients and their families that have been recently diagnosed with malignant pleural mesothelioma, two questions came to mind. What do you want to do? What is important to you? Two patients, two spouses, supportive adult children, a roomful of people, including social workers, medical experts, chaplaincy, all talked except the two patients. At the conference, it is a lot of information to absorb, a lot of statistics and different possible scenarios that could happen to the patient. Well-intentioned family members asked lots of questions. All of them were trying their best to find a path for their loved one’s journey with mesothelioma. The two patients sat silent no questions, no visible reactions.

These two patients and their families were just starting on their journey with mesothelioma. The treatment options that are recommended to them are specific to them. Hopefully both will have a long journey with mesothelioma, with a great quality of life during the remainder of their lives. If things do not go well, their families and the team taking care of them will know that the patient was asked two important questions before proceeding with their treatments. “What do you want to do?” “What is important to you?”

The bottom line is that this journey is yours, the patient with mesothelioma. You must make the decisions on how you want, and how you choose, to live your life.

– Ellie

Hope for Mesothelioma Patients: Looking forward to 2017

As we approach the end of 2016 and the beginning of 2017, the mesothelioma community has reason to be optimistic as progress is being made towards a cure. Some of the progress made in the battle against mesothelioma in 2016 continues into 2017. As we highlight a few of the accomplishments, we are reminded that none of these could be accomplished without the mesothelioma community working together to advocate for, support and educate the victims of this asbestos related disease. Participation in clinical trials is vital to advance treatment for patients with mesothelioma now and for all future victims of mesothelioma.

Mesothelioma experts have known that every mesothelioma tumor is as different as every person’s fingerprint. Women, particularly aged less than 50, have also been noted to have longer survival with mesothelioma.

Mesothelioma is a complex disease with many genetic mutations. In February of 2016, Dr. Raphael Bueno, published ground breaking research about the gene- sequencing of over 200 mesothelioma tumors. In collaboration with scientists from Genetech, they identified over 2,500 alterations and identified 10 significantly mutated genes in the mesothelioma tumors.

With this research scientists, can now design studies to examine the effects of different medications on more specific pathways – a personalized approach.

Another research study has identified mutations in the TP53 gene implicated in many types of cancer but up to this point not for mesothelioma. The researchers discovered that it was found in 2x as many women with mesothelioma then men. The estimated 5-year survival rate for women diagnosed with mesothelioma is around 22%, for men 9%. One more building block for tailored care for mesothelioma.

These are just a few examples of the progress that continues to be made and advanced for treatment options for mesothelioma patients.

There is no single magic pill that will cure mesothelioma. Progress is being made and must continue with more involvement in clinical trials at the mesothelioma centers of excellence.

Looking forward to more progress and involvement in 2017!

We wish a Happy, Healthy, and Safe New Year!

– Ellie and Lisa

  • This field is for validation purposes and should be left unchanged.

Your message to us will be held in strict confidence. All requests for information by mesothelioma patients and their family members will be answered within 24 hours. Mesothelioma Treatment and Care Guides are sent to mesothelioma patients and families by overnight delivery.

Recent Articles

Have a question? We can answer it!

Mesothelioma Questions