Mesothelioma Warrior Medical Innovation Bill

Mesothelioma Warrior Mavis Nye Offers Support to Lord Saatchi and His Medical Innovation Bill

Mavis Nye is no stranger to the spotlight. Since she stepped out in 2010 at the Mesothelioma UK Conference in London to share her story of mesothelioma and to fight for more effective treatments for all mesothelioma patients, Mavis has made sure that the plight of mesothelioma victims is heard. On February 24, Mavis’ voice was heard around the world when she took a seat next to Lord Maurice Saatchi of the House of Lords as he launched the public consultation period of the Medical Innovation Bill.

The bill, introduced by Lord Saatchi and referred to as the Saatchi Bill, is intended to “help doctors innovate new treatments and cures for cancer and other diseases” without fear of retribution, as explained on Tumblr. Doctors will be able to “deviate away from standard procedures and innovate, safely and with the protection of the law” in order to offer patients effective treatments. For mesothelioma patients, like Mavis, who have exhausted their treatment options, this bill could mean the difference between life and death.

“I back this innovation bill. And when do I want it? I want it today, because I might not be here tomorrow,” said Mavis during the panel discussion as she talked about the importance of the bill to her.

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Mavis Nye

“I want it today, because I might not be here tomorrow.”

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Mavis is Passionate About the Bill

Mavis has been battling mesothelioma for nearly five years. After countless procedures, surgery, radiation, and four rounds of chemotherapy, her doctors told her she has no more treatment options. But Mavis isn’t about to give up, so every day she surfs the internet hoping to find a breakthrough in cancer care that will give her one more chance at halting the growth of her mesothelioma. Although Mavis has not yet found her silver bullet, her quest has led her to become one of the biggest proponents of Lord Saatchi’s proposed bill.

Mavis stumbled upon the Saatchi Bill during her research one day. She immediately realized the benefits this bill could offer her, and other terminally ill patients, and she joined the social media campaign as she turned to Twitter and Facebook to encourage her friends and followers to join her in supporting the bill. Mavis’ passion and excitement about the bill brought her the invitation to sit on the Google Hangout panel discussion with Lord Saatchi and other patients, family members and medical experts.

The Saatchi bill could revolutionize the way patients are treated in Great Britain. “This bill will not cure cancer, but it will encourage the man or woman who will,” said Lord Saatchi.

In Mavis’ case, doctors could look beyond mesothelioma-approved treatments and consider treatments that have been approved for other cancers or diseases, such as breast cancer, that share some of the same characteristics as her cancer. The bill will allow doctors to implement new methods of use for an old medicine.

“That is more than a doctor would dare do today without the bill because they fear they could be sued,” Mavis explained in an email to MesotheliomaHelp.

An Invitation Brings Mesothelioma to the Forefront

Mavis’ outreach prior to the public consultation event had a snowball effect leading Lord Saatchi to highlight mesothelioma during the event. Mavis extended a personal invitation to Brian Sullivan of Verastem, a U.S. pharmaceutical company. Sullivan, in turn, invited Professor Dean Fennell, one of the world’s leading mesothelioma researchers, of the University of Leicester, who was then asked by Lord Saatchi to sit on the panel. Sullivan and Prof. Fennell collaborate on the global clinical trial COMMAND (Control of Mesothelioma with MAiNtenance Defactinib).

Many late-stage cancer patients and other seriously ill patients, whose best chance at an effective treatment are clinical trials, are shut out of Phase I and Phase II clinical trials in the UK. Professor Fennell was asked if the bill would make a difference for clinical trials. He said he hopes that with this bill when researchers and doctors see “encouraging, exciting results in a drug,” they may be able to follow the U.S. by allowing a drug to be approved without a full trial.

“I’m terminally ill anyway, and I’ve signed a consent form, so why can’t I have a Phase I trial,” added Mavis. “I would try anything,” she said later in a BBC interview.

http://www.bbc.co.uk/programmes/b03w64sz

Raising Awareness of Mesothelioma Continues Long After the Event

Mavis recounted her whirlwind day at the Parliament in her daily blog, Living with Mesothelioma. She and her husband Ray, who accompanied her, were up at 5:00 am and were not back home until 8:30pm. Mavis had a very full day in London of sitting on the panel, being interviewed by various newspapers and journals, being photographed with the group, and still more interviews. All of the resulting articles have been highly popular in Great Britain, and throughout the world.

Even several days later, Mavis continued to champion the cause for mesothelioma, as the media vied for comments directly from her, and she sat for interviews with the BBC and the local newspaper, the Kent Gazette. Twitter and Facebook continue to light up cheering on Mavis Nye, and encouraging the woman who, while fighting for her own life, is making a difference for all mesothelioma patients.

“You were extraordinary, and I take my hat off to you,” Lord Saatchi said to Mavis in an email after the event.

Tune in next week: Mesothelioma Help Cancer Organization goes into detail about the Saatchi Bill and how it will benefit patients in the UK.

Read Mavis’ inspiring story as she fights mesothelioma and enjoys life with Ray and her family.

Visit the “Take Action” section of the Saatchi Bill on Tumblr or the Medical Innovation Bill comment section via the Department of Health to show your support. Also, follow @SaatchiBill on Twitter or on Facebook for daily updates.

Sources:

BBC Interview
House of Lords Google Hangout
https://www.youtube.com/watch?v=9uxwl0e-DcU
Kent Online
http://www.kentonline.co.uk/canterbury/news/washing-my-husbands-clothes-has-13427/
The Saatchi Bill
http://saatchibill.tumblr.com/
US FDA
http://www.fda.gov/forconsumers/consumerupdates/ucm387513.htm

Dr. Sugarbaker’s Legacy at Boston’s Brigham & Women’s Hospital

News is quickly spreading that Dr. David Sugarbaker will step down from his position as the Chief of Thoracic Surgery at Boston’s Brigham & Women’s Hospital effective April 30. Dr Sugarbaker is best known for his relentless fight against mesothelioma.

As a staff nurse who had the pleasure of working alongside Dr. Sugarbaker for the past 20 years, I feel honored and privileged to have had that opportunity. I could certainly go on and on about what a wonderful physician he is and how much he cares, but the bottom line is that he will be sorely missed. Dr. Sugarbaker was truly passionate about his patients he cared for and he did everything within his power to help them win the war against mesothelioma.

During his daily rounds to the ICU and other floors, his energy and radiance set the tone for the day, and that enthusiasm will be hard to replace. His presence was almost electrifying. He would offer hope to the sickest of the sick convincing the patients to move forward. The patient response was remarkable.

Dr. David Sugarbaker has accepted a new position as Director of the Texas Lung Institute at the Baylor College of Medicine and Chief of Thoracic Surgery in the Michael E. DeBakey Department of Surgery. He also will be named as The Olga Keith Wiess Professor of Surgery, Baylor College of Medicine.

Selfishly, all of us at Brigham and Women’s Hospital will miss him, but I believe the mesothelioma world will benefit greatly by sharing his expertise outside of Boston. Perhaps this played into Dr. Sugarbaker’s decision to move on, and I respect that decision.

During his 25 years of service at Brigham and Women’s, Dr. Sugarbaker has made significant contributions to patient care, research and teaching which include the establishment of the first lung transplant program in New England. He also founded the International Mesothelioma Program at Brigham.

Dr. Sugarbaker first came to Brigham in 1979 as a surgical resident. Upon completion of his residency in 1986, he left to obtain cardiothoracic training at the University of Toronto. He returned to Brigham and Women’s in 1988 as the Chief of the newly formed Division of Thoracic Surgery, a program which is now recognized as one of the best in the nation.

Dr. Sugarbaker has been focusing on pleural mesothelioma since 1988, and his contributions to the treatment of this devastating disease have helped countless patients and families who had no other options. In 2002, he founded the International Mesothelioma Program with the primary goal of finding a cure for this disease. This program is the largest of its kind and attracts patients from around the world.

Dr. Sugarbaker played a leading role in the establishment of the Tissue and Blood Repository at Brigham and Women’s Hospital in 1989. This was one of the first tissue repositories in the U.S. and has led to extremely fruitful collaborative research projects. He is deeply committed to teaching the next generation of physicians and has mentored hundreds of residents and fellows during his time at Brigham and Women’s. His contributions to education also include the establishment of a unique fellowship in thoracic oncology and a minimally invasive thoracic surgery fellowship, as well as a visiting scholar program for Thoracic Surgery.

Sources:

Thoracic Surgery in the Michael E. DeBakey Department of Surgery
https://www.bcm.edu/departments/surgery/divisions/cardiothoracic-surgery
founded the International Mesothelioma Program with the primary goal of finding a cure for this disease
http://www.brighamandwomens.org/Departments_and_Services/surgery/thoracic-surgery/mesothelioma/default.aspx
The Olga Keith Wiess Professor of Surgery, Baylor College of Medicine
https://www.bcm.edu

Mesothelioma Patient Turns the Corner on Her Recovery

Last week the mesothelioma patient we have been following for several weeks was still very sick with infections, air leaks, and respiratory failure she developed after her surgery. She was very depressed, as was her family, as they were not expecting such a rough recovery. The family has been very frustrated, and they started second-guessing their decisions and began to wonder what their loved one really wants for her care. They held a family meeting where they decided to re-assess in one more week. Fortunately, there have been small but steady gains during the last week – the woman’s infections have subsided, she is gaining strength and her attitude has become more positive.

In talking with her husband and daughters, who are in their early twenties, I got to know what kind of person the woman is as well as how much this sickness is affecting them too. Finding themselves in the role of caregivers is foreign territory. When asked to describe what their day looks like, they explained that it starts early with a call to the ICU to see what kind of a night their loved one had. Then it is on to the hospital where they spend as much time as possible with their wife and mother. It includes time spent in the waiting room with family members of other patients, some much older patients with mesothelioma who are doing better than their loved one. Then they meet with the doctors for their daily update.

Thankfully, their loved one has a team of primary nurses who know her well and feel like part of the family at this point. Today, one of their favorite nurses is on duty. She is upbeat and personable – does she have any idea what that means to them? They say they do not have to worry about the “numbers” or their mother being too sick to ambulate – when they know this is vital to any chance at recovery. The hours go by slowly. They talk about how they try to deal with so much uncertainty – their wife/mother is the ‘director’ of the family and she guides them all through life. She would be the one who could tell them if they should go back to work or school, or if they should spend so much time with her. They want her to help direct them as to what to do now.

There have been guidelines all along for patients without complications; but their case is unique. Uncertainty clouds every decision. What if one goes back to school and their mother takes a turn for the worse and dies? Should they be thinking like that- it is reality- that it is a possibility. They describe being paralyzed with indecision as they wait for their “director” to tell them what to do. Mostly, they describe a situation so foreign to anything they have gone through as individuals or a family.

Emotional exhaustion has turned to physical exhaustion for all of them. They play the ‘what if’ game. What if she recovers, but she is in pain? What if her infections get worse, should they continue the same treatment? All those conversations about what she would and would not want are echoing in their heads. Luckily, their loved one’s health is improving.

Mesothelioma has been held at bay for another day.

If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please contact us.

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Mesothelioma Diagnosis – Where Do We Go From Here?

I remember the phone call so vividly: walking into the gym after a long day at work. My phone rang, and I just knew it was my mother. We were supposed to get Dad’s diagnosis at the end of the week – sure enough it was Friday and here she was calling. I dropped my bag, answered my phone, and bam, there it was. Mesothelioma. I froze. What was this? Neither my mom nor I had a clue as to what this cancer was all about.

I don’t remember if I was more scared and upset by Dad definitely having cancer, or by having no idea what my dad would go through with yet another type of cancer in his lifetime. I picked my gym bag back up and went straight home.

I talked to my mother on my way home. We cried, I listened to her tell me what the doctors said, and we took turns voicing our concerns. To my surprise, despite the news he got that day, Dad still went to work. I don’t know how my father has the strength that he has, I only hope it rubs off on me somehow because at that point I felt defeated. That night I decided to stay put in Philly at my place with my roommates. They gave me comfort that night and helped me to think through things logically, which in turn gave me strength.

Having fought cancer in the past, Dad assumed that once again he could stay in the comfort of his own home and local town for treatment. This was not an option since his past oncologist only worked with patients who had melanoma, and there were no oncologists in his hometown that specialized in mesothelioma. At first we thought that a doctor who treated lung cancer could treat him, but this was also not an option.

After an initial appointment with our family doctor, he recommended doctors in New York City and Philadelphia. This was very overwhelming to Dad because that meant traveling to one of the cities, long drives, traffic and more time off work. This was a lot to consider. My mother and I were very scared and stressed with waiting for a decision as to where to go. Dad did his research and listened to our family doctor about both places, as did my mom and I.

After researching both locations, the final decision was the Abramson Cancer Center of the University of Pennsylvania in Philadelphia. We chose Abramson mostly because of their great reputation, and the fact that they could get Dad in for his first appointment much sooner than Memorial Sloane-Kettering in NYC. Plus I live in Philadelphia, so if my parents really needed a place to stay, they could stay with me.

After Dad’s first appointment, the doctors were aware of what they were facing and could have a conversation about treatment options. The process of treatment happened very quickly and my father began his fight with this horrible cancer. Throughout this whole experience our family’s mindset and goal was to get Dad the best treatment out there.

I can say that Dad is in very good hands and his team of doctors has been wonderful from the beginning. They continue to provide the best possible treatment and are very thorough when explaining what their plan is and how each and every appointment goes.

Check back next week for what treatments my dad went through, and how he fared throughout them all.

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Family of Mesothelioma Patient Faces Tough Decisions

This week we continue to follow a woman who is recovering from surgery after being diagnosed with mesothelioma. She has been struggling more than expected, and the family is trying to come to terms with the extended care needed to get their loved one back on her feet. The patient is critically ill and has many medical issues that need to be managed, and her family members are feeling lost.

They remember being told something about their loved one facing potential complications from surgery, but nothing could have prepared them for all this. Serious infections, respiratory issues, and most upsetting to them, the patient is very depressed and has lost all hope. Everything is a major effort- from acknowledging her family to asking for water- and it is painful for them to watch.

When things do not go as we expect and medical decisions need to be made, the most important thing a family member can do is to listen and to keep in mind what the patient told you in the past. What are their wishes? Those difficult “what if” and “I never want xxx care” conversations are all running through your mind. It is vital at this point in your loved one’s illness, that you remember their wishes and keep the lines of communication open with your healthcare team.

Now, it is excruciating to watch their family member struggle to talk and to perform the most basic human functions and they can’t believe that she will ever get better. The truth is while some patients do recover, some may not. Recovery goals are set each day in the ICU, and measuring the patient’s progress against them is one way to assess how the patient is progressing.

In our patient’s case, after two family meetings involving the health care team, some decisions are made. After much discussion and listening and praying the family has decided to keep going with treatment and to re-evaluate in one week. Now, the family is praying for improvements in their loved one.

Although to let you realize how grave the situation is, the decision has been made not to perform CPR if her heart stops. From the medical standpoint the treatment and care is aggressive, and the medical team likes to know they have exhausted all options. From the family’s perspective, they would like to see their loved one comfortable and at rest.

Next week we will offer an update as we continue to follow this patient.