Updated on January 16, 2015

We have been touched by asbestos in individual ways, yet we are joined together by a common bond of community. As a testament to the strength of our global family, Asbestos Disease Awareness Organization (ADAO) is highlighting the courageous stories of our members with the new “Share Your Story” feature on our website.

We would like to honor the courageous story of Mavis (United Kingdom) – especially as we are celebrating 2011 Global Asbestos Awareness Week.

We encourage you to submit your personal stories by clicking here and following the simple instructions on the page. In sharing, comes healing. Remember, you are not alone.

MAVIS’ STORY

Mavis submitted an update to her Share Your Story that was published in April 2011

Follow Mavis on Facebook

Posted on January 16,2015
Updated on March 21, 2023

Name: Mavis

Location: United Kingdom

Date of Birth: 27/8/1941

Date of Diagnosis: 2009

Diagnosis: Mesothelioma

Treatment: Treatment is at the Royal Marsden in Surrey. Every two weeks I have a half hour infusion. of the MK3475 and I will carry on as long as I get shrinkage which so far is almost 60%, and my body still tolerates the drug

I’m just an ordinary woman who married at 19 and washed my husband’s clothes when he came home from work at the Chatham Dockyard as a shipwright. I had no idea the powder on Ray’s clothes was anything other than dust brought home from work. I shook his clothes and then put them in the washing machine.

Forty-eight years later, in June of 2009, I was diagnosed with mesothelioma and issued a death sentence of three months as a result of exposure to the dust, or as I now know it to be, asbestos. I refused to accept that I had been given only three months to live and after my pleurodesis (a medical procedure to remove excess fluid from the pleura—the space between the lungs and chest wall that line the lungs) at the Guy’s Hospital in London, I started chemotherapy—a regimen of cisplatin and Alimta®—which is the standard treatment in the UK. This treatment worked for fifteen months before the cancer began growing again.

Next, I was offered the NGR-hTNF trial at Maidstone. This clinical trial intended to act on the tumor’s blood vessels. Unfortunately, this trial didn’t work for me or I had a placebo.

After another two sessions of cisplatin and Alimta®, I became allergic. However, this treatment did work and we had stability again for a while…until growth was found in my next scan.

What would I like next as there are no new trials or chemo? I was not used to a doctor having no answers.

I e-mailed Saint Bartholomew’s Hospital and by Friday of that week I had an appointment where Peter Szlosarek, MD, PhD offered me the last place on the ADAM Trial. Enrolling in this trial meant I would need another bi-op to determine my eligibility. I was thrown a lifeline of GemCarbo (gemcitabine and carboplatin) chemotherapy that I could have locally. I returned to Canterbury where I was on chemo again until September.

Bad News…

My October scan was bad news…the chemo hadn’t worked. A scan every three months showed the growth of three millimetres every three months. I wasn’t happy.

And so…

I got right behind the Saatchi Bill (The Medical Innovations Bill) and worked with Lord Saatchi and the doctors. I was also on the committee when it was launched at the House of Commons.

A doctor then gave me the advice to go to the Royal Marsden where they were starting a trial that might suit me. I asked my oncologist and she referred me.

I’m now on a Phase 1 trial of immunotherapy. It isn’t just for mesothelioma, but for 30 other types of cancers. The trial, MK-3475, is testing the drug Keytruda® (pembrolizumab) as it blocks the interaction of a substance called PDL-1 with PD Inhibitor. Cancer switches off the immune system and Keytruda® switches it back on so you can fight the cancer cells. 

When I was first diagnosed with mesothelioma in 2009, I Googled the word as I’d never before heard of the disease—I had only heard of asbestosis. All the depressing reports and write-ups that came up in the search gave me a shock as there seemed to be no hope.

Needless to say, I was so surprised that my journeys to the Royal Marsden for this trial and the scans for 16 months and 38 infusions have shown a gradual shrinkage of 81% and three tumors have disappeared.

On my last scan, I didn’t need to get a print off this time. My doctor said there is no active mesothelioma in my lungs.

The tumors are there and very small, but there is no active mesothelioma in them??? We (my husband Ray and I) couldn’t take that in. There was silence and we just looked at one another.

My thoughts on all of this are now…Why?! Why me??? There were about five mesothelioma patients that started the trial and sadly I’m the only one to still be on it. The other patients failed which proves that this isn’t a drug for everyone. My bloods are taken every two weeks and my DNA is looked at by Merck, but I haven’t yet had a clear answer as to why me?

Keytruda® has been very kind to me with no side effects except for very dry skin that causes an itch and a rash, but steroids are successfully working on that. Other than the itch and constipation, I can’t say anything else has been a problem.

As of now, the plan is for me to still stay on the trial until May 2016. However, we have to be careful that the drug doesn’t cause any inflammation on my lungs. I do get out of breath now, but if any inflammation occurs it will be like when I first lost my breath—really difficult.Any of my organs can develop inflammation, so I will keep my eyes out for any trouble.Also, the immune system will work in a way that it recognizes the mesothelioma as an enemy and attacks it by building up a little army that remembers when it sees the mesothelioma again to initiate an attack. So the effects last a long time and stop any tumors from progressing again.

The treatment has worked for me and currently there is no active mesothelioma in my body, but there is still a long way to go to getting a cure for this terrible disease. While this trial is a step in the right direction, I do remind people that this treatment unfortunately doesn’t work for everyone. We mustn’t give false hope, but we can give hope! xx

I had 2 years completely free to travel and talk at venues living life to the full until that scan in 2020, which showed the disease was growing again.

I rechallenged the drug and 14% shrinkage was achieved but then the cancer got crafty and started growing again. That’s how it has gone on. Growing very slow though 

Chemo was tried for 4 sessions and shrinkage was achieved but the pandemic and my catching COVID halted treatment.

I have had a scan Jan 2023 and growth has been 10% so I have applied to go into the Nero trial. Let’s see if I can knock it back again fingers crossed.

Asbestos is the only cause of Mesothelioma, so until the US Ban Asbestos they won’t be able to start to solve the problem. Each year I say I hope it’s this year. Let’s pray that it is the last time I say “I hope it’s this year”.

Posted in April 2011

“Social Media and Mesothelioma” – Mavis’ Story

Mavis has not let a diagnosis of mesothelioma curtail her passion for life. In fact, since her diagnosis, she has helped raise awareness of asbestos in the UK through her online blog, a book, and other social media outlets.

Mavis decided to write a blog after she was diagnosed with mesothelioma in 2009 as a way to keep her friends and family updated while she underwent treatment. Originally, Mavis was told she had 3 months to live, and while everyone around her was shocked and worried, Mavis moved forward with treatment.

Before her diagnosis, Mavis was a very active person. She attended fitness classes, went swimming, walked in the countryside sometimes up to 14 miles, and without fail, walked her dog 2.5 miles every day. While on holiday in Spain in 2009, she unknowingly burned herself with an iron but didn’t realize it. But her body did react – her arms and hands twisted in, her feet went numb, and she suddenly couldn’t breathe. At K&CC Hospital, 5 liters of fluid were drained from her lungs and she underwent a VATs operation with Talcum Powder to prevent future fluid build-up. She was then diagnosed with mesothelioma and given a life expectancy of 3 months – 2 years.

Mavis never worked directly with asbestos. Instead, she washed her loving husband Ray’s clothes when he returned home from the Dockyard where he worked as a Shipwright after leaving the National Service. While Mavis was diagnosed with mesothelioma, Ray developed scarring on his lungs.

Mavis went on to receive chemotherapy – a combination of Alimta and Cisplatin in New York and also radiation. The 10 hours of chemotherapy pumped into her veins made her sick the next day and weakened her to the point it was difficult to walk around. But just as she regained her strength, 21 days were up and it was time for her next round of chemo. After 4 sessions, Mavis learned that her CT scan showed she was stable. About a year later in August 2010, her oncologist was excited to tell her that her tumor had shrunk. He told her “we don’t often sit in this chair and give out good news but today is an exception.”

Since then, she’s enjoying life and is now able to walk her dog again, though she does tire easily. Ray and Mavis have also gotten good use out of their motorhome recently. In the last four months they have covered over 4,000 miles in the UK.

On March 14, 2011, Mavis learned that her tumor is growing again. She will undergo her second line of chemotherapy in May 2011. Meanwhile, she is also finding trials at St Barts in London under Jeremy Steel who she visits Friday April 8th. She remains positive and continues to tell her story. In fact, her blogs have received more than 30,000 hits in 2 years.

She has found so many friends on Facebook (the MesoWarriors) where everyone helps each other and discusses everything including treatments and what we are going through. And ADAO has been a diving board for her to tell her story and she also promote ADAO’s message through Twitter and Facebook, where she shares all of Linda Reinstein’s messages. Mavis is raising money for her new charity, Mesothelioma UK. Social media’s instant access to the world has allowed her even to connect with a support group in Australia through Skype. Mavis says that, “I wouldn’t have been able to achieve half of what I have if it wasn’t for the social media.”

***

CLICK HERE TO READ MORE SHARE YOUR STORIES