Mesothelioma Survivors Celebrate Life on National Cancer Survivors Day

Mesothelioma survivors are encouraged to join the nearly 14 million other Americans, and millions more around the world, who have survived cancer on Sunday, June 2, 2013, to observe the 26th annual National Cancer Survivors Day.

The day is a CELEBRATION for those who have survived, an INSPIRATION for those recently diagnosed, a gathering of SUPPORT for families, and an OUTREACH to the community, according to the National Cancer Survivors Day Foundation who sponsors the day. We encourage all mesothelioma survivors to take the time out to celebrate with your family and others.

“When most people hear the word ‘cancer,’ they automatically think the worst,” says Foundation spokesperson, Laura Shipp in a press release announcing the day. “But the truth is that more people are living longer and better quality lives after cancer than ever before. National Cancer Survivors Day is an opportunity for these cancer survivors to come together and celebrate this new reality in cancer survivorship. There is life after cancer. And that’s something to celebrate.”

The American Cancer Society reports the average survival time for people with mesothelioma, a rare cancer caused by past asbestos exposure, is between 4 and 18 months. However, between 5% and 10% of mesothelioma patients will live at least 5 years after diagnosis. The five-year survival rate for lung cancer is 16%, according to the National Lung Cancer Partnership.

The National Lung Cancer Partnership celebrated its ten-year anniversary last year, and to mark its next decade it announced its bold, new vision: double the overall five-year lung cancer survival rate, currently at 16%, to 32% in the United States by 2022.

We honor these special mesothelioma survivors who have battled the cancer and have been able to move on with their lives despite the challenges they face every day: Jan Egerton, a nearly 15-year survivor from England, Lou Williams, 10-year survivor of Australia, and Don Smitley, 18-month survivor from Pennsylvania. You can read more about these mesothelioma warriors through “Faces of Mesothelioma.”

Women cancer survivors are asked to attend the National Women Survivors Convention, which will take place this year in Nashville, TN, August 22 – 24. It’s a fabulous opportunity to learn, network and celebrate with other women survivors.

To find out more about National Cancer Survivors Day visit the Foundation’s website.

Managing “Adrenaline Rushes” with Medication

Those suffering from mesothelioma may encounter a strange phenomenon once in a while which I can only call an “adrenaline rush.” It has happened to me quite regularly over the years and recently when I posted about it on Facebook I was quite surprised that a few others have experienced it too.

I have no idea how it starts or why it happens, but I do know one thing: it can be a frightening experience. Even now that I am used to them, I still find myself scared.

I’m not sure whether they run in a pattern of time, but I do know that for me my normal temperature is 36.5C (97.7F), but when I go through one of these episodes my temperature can drop as low as 34.7C (94.5F). During my last four attacks, however, my temperature has only dropped to 35.6C (96.08F).

Sometimes they happen when I have gotten up in the middle of the night and there is a big change in temperature from being under covers in the bedroom to entering the cold tiled floor of the bathroom, or when I have been hot and come into a cool room. Whether this is the trigger I do not know. It starts by me feeling unsettled, then I feel that I can’t get air and my heart seems to start racing. I know the best thing is to try and sleep through this, but I can’t lie down because my body starts telling me that I can’t breathe. I have paced before, but I found this seems to make the heart race more. I can’t sit still, my mind is everywhere and I become clammy.

I am not an advocate of taking pills for the sake of them, but when these adrenalin rushes start I have found that taking a diazepam (marketed as Valium) tablet is the only way I can get through them.

I fluctuate between being too hot and too cold. Then I fluctuate between wanting to lie down and wanting to stand up. In the doctor’s waiting room I was hot and cold, on and off the chair, feeling tearful one moment and angry the next. He was running late and honestly I wanted to lie down and die.

The doctor took my temperature, asked me a few questions but I can’t really remember any of them, all I wanted to do was be knocked out to stop my mind from working overtime. He prescribed diazepam, not a tablet he likes to give but one that he knew would settle me. For me the medicine takes about twenty minutes to work, and during that time I try to relax. I typically then fall asleep, and wake up a few hours later after the attack has passed feeling much better.

I understand my body quite well and sometimes I believe these rushes are the start of a growth of a new tumour, maybe it’s my way of the body trying to tell me that all is not well.

It would be interesting to know if any other Mesothelioma patients go through this or something similar, and if you do, how you manage the effects. Feel free to comment below of your experiences.

Additional information about Adrenaline Rushes:

According to Livestrong.com, an adrenaline rush is a sudden increase in the secretion of adrenaline from the adrenal glands. When a person is under stress, these hormones are released to initiate the “fight or flight” response which often includes increased heart rate and an increase in the blood flow to essential organs. The cause of an adrenaline rush may be an imagined threat as opposed to an actual physical threat. An adrenaline rush can also be initiated by strenuous exercise, heart failure, chronic stress, anxiety or a disorder of the brain or adrenal glands, according to Livestrong.

https://www.livestrong.com/article/203790-what-happens-during-an-adrenaline-rush/

Symptoms of an adrenaline rush are similar to those of a panic attack. The American Cancer Society discusses panic attacks on its website under information about anxiety and fear that many people with cancer often face.

http://www.cancer.org/cancer/malignantmesothelioma/detailedguide/malignant-mesothelioma-treating-c-a-m

Useful Mesothelioma Terms for Families Facing Mesothelioma

When dealing with a mesothelioma diagnosis, you learn a new way of life. Everything changes, including your vocabulary. Three terms that I didn’t know anything about before mesothelioma came into my life are pleural effusion, thoracentesis, and pleurectomy.

The term “pleural effusion” came into play before Dad’s diagnosis. Pleural effusion is essentially fluid in the lung. This was Dad’s main, tangible symptom. It was part of the cause of his fatigue and shortness of breath. He was admitted into the hospital with this diagnosis on Thanksgiving Eve, 2011.

On Thanksgiving Day of 2011, we learned another new word, thoracentesis. Essentially, this is where your lung is “tapped” and fluid is drained from it. Although Dad got a little relief after this was done, the fluid kept returning and was drained again in January, during a VATS procedure (an exploratory surgery that led to his diagnosis), and February 2012 during his pleurectomy.

“Pleurectomy” is a word that was so foreign and scary, but that has become close to our hearts, as it saved Dad’s lung and his life. Dr. Harvey Pass performed this surgery on my father on February 15, 2012, at NYU Langone in New York City. To define a pleurectomy in very simple terms, it entails removing the lining of the lung, where mesothelioma usually attaches itself.

So many other terms that you hear in passing become part of your everyday life: chemotherapy, radiation, oncology and ports, just to name a few. When I say that every aspect of life changes, I mean that literally! It does become a lot to take in and can be tough to manage at some points.

Just remember, there are people there to help you 100% of the time. Pray, keep your faith strong, and take it one day (or word!) at a time.

Know more about Mesothelioma and how you can deal with it.

Part II: Chris Knighton Promised to Fight for Mesothelioma Victims

After she lost her husband to mesothelioma, Chris Knighton formed the Mick Knighton Mesothelioma Research Fund to help find a cure for the asbestos-caused disease. In Part II of this series, see how Chris’s efforts earned her a Royal award.

Support Groups and The Snowdrop Memorial

In addition to funding research, the MKMRF offers support groups for anyone who has been touched by mesothelioma. The Mesothelioma Self-help/Friendship Groups provide information and support to sufferers and their families. The groups meet once a month and welcome all whose lives have been affected by mesothelioma.

“We understand how important it is to meet others, and to share experiences, as well as having some fun along the way,” said Chris.

Another way to bring families together has been through the Snowdrop Fund. Chris created the fund to raise money, but also as a lasting tribute to loved ones. Families can set up Snowdrop Funds in memory of a loved one through the MKMRF website, and friends and families can make donations to MKMRF in memory of that person.

Often described as looking like three drops of milk hanging from a stem, snowdrop flowers, according to Chris, “work hard through the depth of winter; then come spring they bloom, bringing hope and promise for a better future.”

As part of the launch of the Snowdrop Memorial Fund, North Tyneside Council and Gateshead Council agreed to plant 5,000 snowdrops along the banks of the Tyne River in North East England, where thousands of people were previously exposed to asbestos.

Treasured Experience

Chris’s resolve to bring an end to deaths from mesothelioma earned her one of the highest honors for an English citizen – Member of the Order of the British Empire (MBE) Award. This is awarded for a significant achievement or outstanding service to the community. An MBE is also awarded for local ‘hands-on’ service which stands out as an example to other people.

“This is truly a treasured experienced,” said Chris upon receipt of the award by Her Majesty the Queen at Buckingham Palace last November.

Although humbled by the honor, Chris has no plans to give up on her quest to help find a cure for mesothelioma.

“For the first time ever, there is much to be positive about in terms of mesothelioma research; therefore MKMRF will continue to raise much needed funding in the hope of delivering real advances into treatment and understanding of the disease.”

Make a donation or find out more about Chris and the Mick Knighton Mesothelioma Research Fund.

See Part I of Chris Knighton’s fight for Mesothelioma Victims posted last week.

Part I: Chris Knighton, Founder of the Mick Knighton Mesothelioma Research Fund, Vows to Fight for All Mesothelioma Victims

Many people who lose a loved one to mesothelioma take the time to mourn, but then they get on with their lives. Not Chris Knighton. After her husband died from mesothelioma, Chris vowed that Mick’s death would not be in vain. Just one year later, Chris formed the Mick Knighton Mesothelioma Research Fund and has dedicated her life to helping fund research to find a cure for the deadly disease.

In 2000, Mick, a seemingly healthy, fit 59-year-old husband, father and grandfather, was enjoying spending time with his family and traveling Europe and the English countryside when he began having difficulty breathing. One month later, he was diagnosed with the asbestos-caused cancer and was told there were “no treatments, no cure, and no hope” for saving his life. He was given just six months to live, and in March 2001, Chris found herself a widow struggling to make sense of the cruel disease.

Fundraising for Mesothelioma

Driven by her heartbreak and her firsthand knowledge of what other families experience as they deal with a mesothelioma diagnosis, Chris joined in partnership with the British Lung Foundation to establish the Mick Knighton Mesothelioma Research Fund (MKMRF). Through her determination and hard work, Chris has raised over £1 million (.5 million) for mesothelioma research.

“Many of our donors have lost loved ones to mesothelioma, and only by working together can we help fund the kind of research that could deliver real advances in the treatment and understanding of the disease,” said Chris in an email interview with MesotheliomaHelp.

Chris is the only ‘full-time’ MKMRF staff member, although she does not draw a salary, and she is supported by volunteers as needed. As a result, “every single penny raised goes towards research and promoting a greater awareness of the disease,” said Chris.

However, getting people to donate to mesothelioma is not easy. Chris has found that the current economic climate, other competing causes and the publics’ general lack of knowledge about mesothelioma all work against MKMRF’s Fundraising Goals. Chris is constantly working to get the word out about the dangers of asbestos. She distributes MKMRF literature to doctors, clinics and hospitals across the UK, gives talks and presentations at conferences and seminars, and grants interviews to local, national and international press as a way to continually spread the word.

MKMRF Funds a Mesothelioma Tissue Bank

Chris is frustrated by the British government’s lack of action in funding mesothelioma research, even though the disease is diagnosed in nearly 2,000 Brits each year, and that number continues to grow. She sees the MKMRF as a way to fill the gap left by the government by raising funds critical to finding a cure for the currently incurable cancer.

One of the primary research projects funded by MKMRF is the Mick Knighton Mesothelioma Tissue Bank (MesobanK). MKMRF donated £300k to create the first formal central depository of mesothelioma tissue and blood in the UK. The goal, according to Chris, is to establish a tissue bank of mesothelioma tumours and blood that will be available to researchers “throughout the UK and beyond.” The tissue samples can be used by doctors and scientists as they research novel treatments to help the growing number of people diagnosed with mesothelioma each year.

Chris noted that all ethical approvals needed to collect and store tissue and blood specimens from mesothelioma patients have been finalized. Fresh tumour samples, blood samples and clinical data will be collected over the next three years. Once the set-up phase is complete, “the MesobanK will be open for business,” said Chris.

Professor Stephen Spiro, Vice Chair of the British Lung Foundation, is Chair of the MesobanK Steering Committee. Dr Robert Rintoul of Papworth Hospital is Chief Investigator, and Chris serves as a member of the MesobanK Steering Committee. She is also a layperson on the BLF’s Scientific Committee.

Chris believes international collaboration is critical if mesothelioma is to be conquered, and she is hopeful the MesobanK will have a huge impact on research into mesothelioma both nationally and internationally.

“Lessons learned about asbestos-related diseases, and in particular mesothelioma, will have a major impact on global health for decades to come,” said Chris.