The MCA BlogConnecting with others one story at a time
The Mesothelioma Cancer Alliance would like to welcome Mavis Nye to our blog. Today, Mavis shares her story from the UK of how asbestos exposure led to her diagnosis of mesothelioma and her treatment journey fighting this disease. Mavis is currently a participant in a clinical trial exploring the effects of the drug Keytruda® which is providing a ray of hope for mesothelioma patients worldwide.
I’m just an ordinary woman who married at 18 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.
The Life Line
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.
My October scan was bad news...the chemo hadn't worked. A scan every three months was showing the growth of three millimeters every three months. I wasn’t happy.
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 a 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.
Being honest, 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
So, I’m still very lonely in the UK and the only Mesowarrior with such a result, but hopefully Merck will move forward to the Phase 3 of this trial that is to be released later in 2016.