April Is Asbestos Awareness Month

April is Asbestos awareness month so I have backed Mesothelioma UKs Campaign

 The fact is while other asbestos-related diseases often only develop as a result of heavy asbestos exposure, there is no accepted safe level when it comes to mesothelioma.

Jobs involving direct asbestos exposure, such as carpenters and plumbers, put people at greatest risk. However, people working in occupations not traditionally linked to asbestos exposure can also have an increased risk due to the presence of poorly managed asbestos in buildings. These include healthcare workers and school workers.

Exposure can also be para-occupational and can occur through exposure to asbestos present on clothing from those working in environments with heavy use or from living near an asbestos manufacturing plant.

It is now over twenty years since the UK banned the use of all asbestos, yet the Health and Safety Executive says asbestos may be found in any building built before the year 2000.

We’re calling time on asbestos. We’re asking the government for two things: We need a central register so that we know where all the asbestos is, and what condition it is in. And we need to set a timeframe for its safe removal, prioritising the high risk settings such as schools and hospitals.

The clock is ticking. #DLTDS #WereCallingTimeOnAsbestos #mesothelioma

http://ow.ly/WG1T50NvZsG

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12Adrian Budgen, Niamh Hagan and 10 others

The Journey of a Mesowarrior

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 was showing 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 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.

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, that 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. Thats 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. Lets see if I can knock it back again fingers crossed

Asbestos is the only cause of Mesothelioma, so until the US Ban Asbestos they wont be able to start to solve the problem. Each year I say I hope its this year lets pray that it is the last time I say.

  Ray wrote an article to give the carers point of view    

                                           A Carers Perspective.

I was asked recently what was my take on carers.

I had to think about that.

I suspect if you asked most people that question you may well get the same reaction.

I thought it’s a cross between being a nurse ,Home help and a form of mental illness. By that I mean if the pressures overwhelm you it can affect you mentally.

If you asked me that prior to 2009 .I would have said,

I don’t have any take, that I had never considered it. Well not specifically. I mean its a natural thing to think that you would care for those you love ,isnt it.

And until that day arrives its just something that sits in the back of your mind.

For me that question was answered much sooner than I thought.

It leapt out at me in 2009 when my wife Mavis was diagnosed with Mesothelioma. Her Dr. Gave her 3 months to live at best.

It was not immediately apparent at that time that it was now to be a responsibility that I must assume.

Unless you have been thrust into that situation you have no idea.

My only concern at that time was to get Mavis home and for what ever time she had left to ensure that, I could make her as comfortable as I could. I began to take on new roles to which I was a stranger.

And in doing so I had now Become a “Carer.”

I think using that term is wrong . It infers that prior to taking on that role ,that you didn’t care before ,which is nonsense.

At that time we had been married almost 50 years we were a team, we each just had different roles.

Now some of her roles would now become mine. Was that such a big deal. No of course not.

This new role for me was, not these new roles, or the extra things I now had to do. My brain was in a mess, all I could think of was I am going to loose the most Precious thing in my life. Mavis .

53 years we had been together. Apart from my National Service never a day apart. How would I cope? How would I live without her.

Most important. Did I want to go on without her. No I didn’t.

My mind spent ages torturing myself on how I could and would end it. My thoughts were consumed with this.

Looking back this was my mental Ilness phase.

Her prognosis of 3 months was now fast approaching and my fears were mounting day by day. For me it was unbearable, I know for her it must have been even worse.

But we passed that 3 months and entered into a treatment phase. Which has lasted 14 years now. Chemo`s and Trials, She has tried them all. To many for me to name.

But oddly enough all the chemo and Trials the sickness and pain she has been through only served to strengthen her.

She went on to begin her own Charity.

The Mavis Nye Foundation set up to help other victims of this deadly disease. She runs several support groups on Facebook helping victims and carers all round the world.

She has been awarded so many awards, her most treasured is her BCA and her BEM she was also Honoured with a Doctorship at Canterbury University.

She says all this work she does keeps her going and helps put the inevitable at the back of her mind.

For me it does not diminish that initial pain ,the ongoing fear. I am just happy that I can continue to help her in what ever she needs and to do what ever I can to smoothe the road ahead.

So now I will try to answer that original question .

So What is My take on Carers .

They deny they need a medal for what they do.

I now have the awareness and the Greatest Respect for these unsung heroes.

For me. I will continue to care for Mavis To do what ever I can for her until my last breath.

So my Take on Carers is.

If what I do is a Carer. Then I am proud to be a carer.

Published in BJGP Feb22/23

British Journal of General Practioners