A Diary Of A #Mesowarrior Living With #Mesothelioma #Asbestos — A week of treatment

 

 

 

 

 

 

 

 

 

Its been a week of travelling 5 days to the Royal Marsden.

The roads got busier and busier through that time but with the schools still closed it meant the journey was done each day in 1hr.30mins

Must say there have been some bad drivers that have had the roads to themselves for so long that speed and concentration was not so good.

We arrived in the car park that still has the barrier up so parking was free but Ray had to stay with the car as not allowed in even to the loos.

The man at the desk got to know me and where I was going so with a squirt of sanitiser on my hands I went straight to Oak ward.

I was the only patient each day which was very strange. They have opened the treatments for us patients that are getting a bad result. All treatment will open June the 1st so they will be busier then.

Blood results were quick on Monday and saw the Doctor who told me I was 17% growth so was still classed as stable it was the fact there was new  growth on my spine lining that they decided to get treatment on the go again.

She said I was free to go so we were soon back on the road.

Tuesday straight in and had ECG and the drug was ready  and I had my injection all done before 12 midday. Thats a record.

Wednesday, Thursday, Friday all just in injection and home. The car hadn’t even cooled down.

Im free now until the 8th of June.

Im locked in again incase my bloods go down making my Immune system weak and with the virus still out there I have to stay home but we have the write up that a Mesowarrior has survived the Coronavirus which is very interesting news.

David Long is 69 and lives in Southampton. In July 2018 he was diagnosed with mesothelioma. He recently tested positive for coronavirus and wanted to share his experience…

Following his mesothelioma diagnosis, David took part in a clinical trial which went well for around 10 months until David experienced a severe reaction to it and had to come off it.

David then tried privately funded immunotherapy in November 2019 which worked to stabilize the cancer but not reduce it. In January 2020 David tried a different type of chemotherapy but again, had to stop due to a bad reaction to it.

David was on no treatment, just pain relief, when, in mid-March he began to feel unwell with high blood pressure and a cough.
He went to hospital and was tested for coronavirus but was told it was negative. Three days later he still felt unwell and went back to hospital. This time, the coronavirus test came back positive.

David and his wife Jo were shocked and frightened by this news. His consultant had already warned them that if David was to get coronavirus, it would be very serious for him and so they had already been self-isolating for a number of weeks. Understandably, David admits that he panicked a little and thought ‘This is it, this could be the end.’

David was sent home and told to isolate – even from each other – within the home. This wasn’t easy and the couple had to have separate bedrooms and one ate meals in the conservatory while the other ate in the lounge.  During this time David wasn’t feeling too unwell. He had a cough, some breathlessness and had very low energy levels but wasn’t in any pain – from the virus or from mesothelioma.

He was so lucky but gives us hope and not to panic if we do catch it as others have not been so lucky.

Dave Long’s experience of coronavirus as a mesothelioma patient

Well we are getting near the 4th of June a date I didnt even dare to think we would reach as it is our Diamond Wedding.

We had a huge party planned with lots of celebrations and fun.

Its going to be a strange time now when we cant even see our family but like so many other people we have to make the best of it.

What a year 2020 has become. It will certainly go down in history as a bad year the one 2021 cant come quick enough.

Keep safe xx

Last blog https://rayandmave.wordpress.com/a-diary-of-a-mesowarrior-living-with-mesothelioma-asbestos-coronavirus-scan-day-at-the-royal-marsden/    My Scan result

The Diary Of a mesowarrior Living With #Mesothelioma #Asbestos –My DNA Has been published

 

Well this has been a week.

I did blog about having a scan WELL on Tuesday my Doctor phoned to tell me that the Mesothelioma has broken through to my spine at the third Vertebra.

So he said they have had a discussion with my Team and Prof De Bono and they have decided to restart  my trial on Monday. Ray cant come in with me I have to do this all on my own for the first time in 11 years.

Ray is my rock so I will miss him and he will sit in the car for a long time on Monday and Tuesday but shorter time on Wednesday Thursday and  Friday as its just an injection.

I must admit I have had a bad week as this has shattered my nerves but my groups and Mesowarriors have helped to get back up.

I kept busy by doing 2 Zoomed and webinars everyday so I have studied Law with 12KBW and Been to the US to ADAO to listen to Dr. Jacki Moline and Robert Sussman and  their expert insight as they discussed “Asbestos, Talc, Prevention, and Policy” on May 13.

I sat in a great meeting with the great team that run the Confirm Trial which has done so well requiting over 300 patients and now its in the process of presenting to NICE I pray they agree to licence our first Immunotherapy for Mesothelioma.

Then I sat in IOSH’s meeting “Returning to work after Covid-19 – the role of OSH and HR professionals”

So It turned out a good week but the Icing on the cake is The Royal Marsden published my DNA findings on my MSD Trial Mk3475/28

I have given many Bi-Ops and from that they raised some wonderful pictures that Anna Minchom  At The Royal Marsden had shown me on her Laptop last year as she was so excited about the paper she was writing.

Dean fennel asked in the confirm meeting if I had seen it, I hadnt so Peter sent the link to me and I was so proud I shared the link with people I knew would be interested. So here it is

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7069263/

I wont copy all of it as I would rather people went in and read it for themselves as it is very Scientific but My story is brilliant as it is a true record from my files and makes me realise I havent told the story as well as you mind only remembers what it want to. so here it is

Case presentation

Clinical background

The patient is a 77-year-old Caucasian woman. She was diagnosed with a left epithelioid mesothelioma on video-assisted thorascopic biopsy in 2009 with pleurally based nodules in the left hemothorax on radiologic assessment. She underwent talc pleurodesis and four cycles of cisplatin and pemetrexed. Sixteen months later, she developed progressive disease and was treated on a trial of NGR-hTNF (a selective vascular inhibitor) for 4 months to disease progression. She underwent rechallenge with four cycles of pemetrexed and cisplatin, achieving disease stability for 11 months. She then received six cycles of carboplatin and gemcitabine achieving disease stability for 6 months.

From June 2014 to June 2016, she received 52 cycles of pembrolizumab (MK-3475) at a dose of 10 mg/kg every 2 weeks on a phase Ib clinic trial (KEYNOTE-028). The tumor biopsy fulfilled criteria for PD-L1 positivity as per trial protocol. She tolerated drug well with immune-related adverse events of grade 2 pruritic rash and grade 1 mucositis, remaining ECOG (Eastern Cooperative Oncology Group) performance status 1. A partial response was seen on imaging after 3 months, with a 91% reduction in target lesions, which was maintained until June 2016 (figure 1). In April 2018, 21 months after completing 2 years of pembrolizumab, she developed asymptomatic, small volume, radiologic disease progression and recommenced pembrolizumab on study, per protocol, on the same schedule. Following three cycles, a 12% reduction in tumor size by RECIST (Response evaluation criteria in solid tumour) criteria from the prerechallenge baseline was seen. Stable disease was maintained for 25 cycles when radiologic disease progression was confirmed.

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(A) Axial enhanced CT of thorax. Upper left panel a: baseline prior to commencing pembrolizumab trial (June 2014) with left posterior parietal malignant pleural disease (white circle). Upper right panel b: maintained partial response after 52 cycles pembrolizumab (April 2016) with minimal residual pleural thickening (white arrow). Lower left panel c: disease progression (July 2018) at site of previous disease along the left posterior parietal pleura (white circle). Lower right panel d: partial response in left parietal posterior pleural disease following three cycles pembrolizumab rechallenge. (B) Tumor response.

I leave you now to read what you choose to.

https://www.mavisnyefoundation.com/my-donate-page.html

A Extra Blog to bring you an experts opinion of masks #Mesothelioma #asbestos #Mesowarriors #Coronavirus

Gary Pharo

Respiratory Technical Specialist at Sundström Safety AB: Helping people to live longer, healthier lives

As we get ever closer to lockdown being eased in the UK, could I make a request. Lobby your MP & could I kindly ask those of you that have the correct ears, please pass this message on. We are bombarded with ads about staying at home – quite correct. But can we start to change the narrative. Could the govt please think about making some ads about wearing PPE? Guidance regarding what the difference between various masks is, how to wear & dispose of them etc. How to wear gloves, remove them & of course still washing our hands. I can’t really speak for all, but I’d be fairly certain that ALL the main manufacturers would be happy to assist. Either that or we risk getting a tsunami 2nd wave when people wear the wrong masks, ‘adapt them’ ignore social distancing & not even take off their gloves to eat some lunch! Enclosed are a few examples that have been sent to me recently. I’m not trying to put these people down – I can no more operate a checkout than I can pilot an aircraft…I haven’t been shown how to do either. Believe it or not, the first image is the chair of the Congressional task force created to focus on COVID-19.

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — A Catch Up -Living in a different world

 

 

 

 

 

 

 

 

Good Morning. I have been a bit  lazy writing my blog but then I didnt think my life was very interesting in lock down. This staying in is very hard. The house gets cleaned I will rub the paint off of the doors and cupboards soon and we cant buy paint so I have to try and stop this feeling that everything has to be sanitized.

Its like you can see the virus dripping off of everything, infact that has been in my nightmares that I have. Dreaming, when asleep, has gone into overtime, its as if the brain just cant relax so by the time I get up Im worn out and tired again. We try hard not to drop off in the afternoon but power naps after lunch are hard to turn away from.

I have hunted out webinars and zoom meetings just to see there is an outside world. Not being able to see the family and give a hug or meet with friends is so hard. We can hear the traffic and see and hear trains running and yet my lovely car has to sit there. Ray does start her now and again and she roars to life just waiting to take us back into civilisation.

You wake up every day and just want this to be over and go back to normality, then you turn on the TV and there is Piers mouthing off about the Government and the Coronavirus. That is all we hear about now. Its all I want to know about as we need to know where we are with the fight against something we cant see and yet if it comes to this house we will not survive.

So many people dying, you just cant imagine its beyond working out the sadness and grief.

What I dont understand is the fact so many feel it wont happen to them and they are carrying on as normal and coming to our seaside towns maybe bringing the virus to us. Kent has the highest figures outside of London and yet you cant hold people locked up as humans are a social species. The roads this weekend have got very busy so people are making their own rules and are now champing at the bit to get back to normal life again.

Im actually looking forward to my Scan on the 11th May as we are officially allowed to travel so we can see the outside world.

So The garden is tidy and growing normally. The bulbs have flowered for spring so we are fooled that life is the same. It will never be the same again and I hope the world will be a better place. That we have learnt a huge lesson. Dont take anything for granted again. people have shown their wartime spirit and we will get through this.

I have been getting my London fill through the eyes of a wonderful photographer Damien Hewetson . A young man that works in London has been keeping us happy on Face Book

 

 

 

 

 

 

 

 

We have never seen London like this as even late at night the traffic is heaving and packed with people.

 

 

 

 

 

 

 

 

My own son has had to go to London to work and has be trying to tell me how empty London was as he went around servicing fire alarm equipment to keep these empty buildings safe, but until you actually see it with your own eyes it is hard to imagine all the empty roads and bridges as the shops and business’s are abandoned.

Mesowarriors are coping really well and we have helped each other on Face Book to get through. The biggest worry has been getting shopping. We cant go out but trying to get a slot for home delivery has been so hard. I was OK at the beginning as I had a shop booked for 3 weeks ahead so I kept going in and changing that order as gradually more and more things came out out of stock. Since then I have had to turn on each day at different times and hope to find a slot. The shop I had coming today was easier and I had a choice of days and times. Many Mesowarriors have not had it so easy especially those on their own. There is a government survey that you fill up and then then they are aware where the most vulnerable are.  https://www.gov.uk/coronavirus-extremely-vulnerable?fbclid=IwAR1EUnrP59HJykVYnsJ5wa4h4rB-yV5HWGxMqWq1ui7DzYDXx6sdLh1LZqQ

The saddest thing has been the loss of Mesowarriors and the family and carers have not been allowed to visit and be with their loved ones. That is the cruelest thing imaginable, my heart goes out to all of them.

Then of coarse funerals have been even sadder. Some have been videoed which helped but not the same of coarse. Hugs to all of you that have gone through such a sad time made even sadder.

 

 

 

 

 

 

So we move on and see where all this is leading and pray it leaves us time to be free again.

New life does give us hope and with our own PM a new father we congratulate the happy couple as they have been through so much and we nearly lost Boris.

 

 

 

 

 

Such good news and he looks so healthy after both parents have been through the virus  — Carrie Symonds and Boris Johnson have named their baby son Wilfred Lawrie Nicholas Johnson – with the name Nicholas chosen in a nod to the two doctors who saved the prime minister’s life. https://news.sky.com/story/carrie-symonds-and-boris-johnson-announce-name-of-baby-son-11982208?fbclid=IwAR0RDkWDHtILGCSUY0WNcCA9p-IyPdR8kz9l3YThl3R67WH_KJ46Gn8OCxY

So everyone Stay In -Stay Safe – and help the NHS