A Diary Of A Mesowarrior #Mesothelioma #Asbestos LASAG Meeting, Scan Results, and Talking with Shield Environmental Services.

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Yesterday we travelled to Canterbury to a LASAG Meeting. We were early as usual but we meet up with the smiling trio and caught up on news as the others all started to arrive.

It is a happy bunch and there were new people joining. In.

We had a really interesting talk from  A Dietician and talked about loosing our appetite’s mainly when having Chemo. I learnt a lot, and tasted the milk drinks they give to you when you can’t eat. They were very nice.

So a good afternoon with lots of discussion these meetings are going to be interesting.

This morning was an early start and a drive to the Marsden for scan results.

A nervy time as you could come home very happy but also very sad depending on results. But after a blood test then a wait until I was called into the examination  room and in came a lovely Oriental doctor.

I haven’t seen him before but now only going every 2 months that is what it is like.

He said that the scan was still the same no change and he said that they are finding when it works it is working for a long time.

I asked about my high potassium but the blood result wasn’t good it had hemobolised  He didn’t seem worried so we said our goodbyes I made appointment for 2 months time and came home.

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The National Comprehensive Cancer Network® (NCCN®) recently updated their treatment guidelines for malignant pleural mesothelioma.
The NCCN, a not-for-profit alliance of 27 leading cancer centers devoted to patient care, research, and education, is dedicated to improving the quality, effectiveness, and efficiency of cancer care so that patients can live better lives.
Their mesothelioma treatment guide book, which was published in collaboration with the Mesothelioma Applied Research Foundation, will in the future include pembrolizumab and nivolumab +/- ipilimumab as options for “subsequent systemic treatment.”
Dr. James Stevenson, an oncologist at the Cleveland Clinic, and a member of the Meso Foundation’s Science Advisory Board, is a member of the review panel of the NCCN.
“I was happy to see that these have been added as options given the data that have been presented to date. The drugs are clearly active in meso and unfortunately there are not going to be randomized data forthcoming in the second or third-line setting with these agents. In addition, we know that there are no significantly effective treatments after front-line pem/platinum (also known as Alimta/cisplatin),” said Dr. Stevenson.
On the heels of a lively debate about off-label treatment at the International Symposium on Malignant Mesothelioma  this year, Dr. Stevenson believes that patients need to be able to access these drugs at some point in their treatment.
“Yes, the main goal is to get these patients on clinical trials but I don’t want somebody to miss out on a chance at life-changing treatment if they can’t get on a study either,” he said.

http://blog.curemeso.org/mesothelioma-treatment-guidelines-updated-include-agents/ 

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Mavis Nye Foundation in association with Shield Environmental Services
The story of living with Mesothelioma….

I will be speaking at the Contamination Expo And I will also be on the Shield Environmental Stand Meeting and Greeting so please come and say hello. I will walk around the Exhibition as I want to meet IATP, UKATA and many more.

I’m now in the Contamination Expo 2017 Brochure

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos -No Op For Ray? MNF Has A Donation Button, Trials Are Going Well

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This was Ray yesterday

he was already for his Cataract Operation.

We had to wait around so we had lunch at 12 as his op was 2pm. Just a small sandwich as he is diabetic and he has to eat at midday.

Off we went and I saw him into the Medical Centre,  but I went shopping near by and was enjoying myself looking at things. I wasn’t in a rush as Ray wouldn’t be ready for 2 hours.

I strolled out and walked to the steps and there was Ray down there waiting for me.

Why???

He said I am SOOO Frigging Angry
10 minutes and 6 lots of drops away from the trolley and they cancelled my op. My Sugar levels are high.

18 pigging months I’ve waited for this Ive stressed out all bloody week now and they cancel again. I am afraid I showed my anger and disgust in surgery. I suppose another 18 months to wait again.

I said walk around get the sugar down and then go back. “Just don’t talk to me”  came the reply.

Oh dear –He is so angry he hasn’t come off the ceiling.  It says in his paperwork he can eat normal, when we came home and looked it up on the net the advice is not to eat 2 hours or even longer.

An email of complaint has gone to the GP as really being diabetic they should do it in the morning. he is not happy, lets hope the GP listens. That dam sandwich I feel so guilty that I made it now as it is carbs isn’t it.

He had turned down his back op for today because he was having his eye done he isn’t having a lot of luck.

The car passed her MOT and they serviced and washed her lovely so that is something I suppose.

We took Louis out and had a lovely walk in the Park so ray calmed down Peace is reigning in the house again.

One good thing is we have our Donation button working for the Charity and people are using that. thank you so much I love the support

http://www.mavisnyefoundation.com/to-make-a-donation.html

Angela has a fund-raiser going on our Face Book site —

The next fundraising is called
The MesoWarriors UK £1 Trail
Donate a £1 min and pm me and we can get the UK map coloured in with your names on. Let’s see how long we can make this £1 trail xxx

We have lots of plans to raise the funding for the MNF. Some wonderful people are helping out and the money goes up slowly but surely. We have Grants to pay out 2018.

Well Monday is Scan day again but lucky the wait will be short as I go back for the results on Wednesday.

There are so many Mesowarriors on trials so many different trials as well. The groups are very busy as they have all joined in and discuss these trial.

My how the treatment has changed this year. We have hope. It is a wonderful thing to have hope and we push the boundaries so we all laugh at the 3/6 months we get at diagnosis.

Even Operations are having great results. Eric Lim and David Waller are really doing well with patients filling up the mars Trial.

https://www.linkedin.com/pulse/uk-nihr-hta-funds-mars-2-trial-surgery-mesothelioma-eric-lim?

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We have many Mesowarriors enter the trial and their recovery is very good. They get the pain under control very quickly and return home in a good time.

People are in the Confirm trial  (Dean fennel) and the Promise opens in the next couple of weeks. (Riyaz Shah.) There are several small trials as well. 2017 has been a good year bring on 2018 so much is just around the corner.

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos –Rain, Writing Speeches and booking up more Speeches.

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Yep this is our summer. We have had such heavy rain at times that we have had to dive out when it stops and get the dog walk in.

We have met the man who does the dog walking here in Whitstable. He collects them all up and then walks them in the park with us. They were a rowdy lot this week and the poor man has really had a barking week.

I have been so busy everyday so many Emails for dates for the diary. We have had a nice quiet month and now the speeches are poring in.

Kent Radio phoned for me to be interviewed on Tuesday morning. A poor man has mesothelioma and is very bad so they are interviewing him and then I have to tell part of my story. So it is raising awareness of the disease .

Then I had emails and have been asked to talk at the Contamination Expo 2017. I was going anyway but to be able to talk there is exciting.

http://www.contaminationexpo.com/

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We have a date at the Hilton first.

EAF advert

I fit this in first

https://www.industrialdiseaselawyers.co.uk/news/annual-mesothelioma-study-day/?platform=hootsuite

Each year Boyes Turner host an annual study day in Reading for the purposes of providing useful updates to medical professionals, care assistants and others involved in the management of mesothelioma patients.meso-study-day-2017-300x230

So I have also been writing speeches and putting the presentation together. The Power point is ready and I’m happy with it all.

The Foundation is coming along and at last with a bank account working well we ae putting Donations in but the just giving has been a pain. Everything is so slow and we want to work fast.

Bike Rides are filling up and we are missing out. but I have a few entering next years Prudential Ride London event. Team Mavis sounds so weird doesn’t it.

https://www.prudentialridelondon.co.uk/events/100/

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On Monday night we had an event that raised money for MNF

POWER! Launch night raising funds for The Mavis Nye Foundation — attending Power! Launch Night Featuring Temple Lake, Luca + Malla at The Monarch.

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The bucket filled up which is s very kind.

The car went in for its MOT and pass so that’s great.

Its been a funny week as we wait for Saturday and Ray is having his eye operation.

The Cataracts  are going to be done at last

Cataracts occur when changes in the lens of the eye cause it to become less transparent (clear). This results in cloudy or misty vision.
The lens is the crystalline structure that sits just behind your pupil (the black circle in the centre of your eye).
When light enters your eye, it passes through the cornea (the transparent layer of tissue at the front of the eye) and the lens, which focuses it on the light-sensitive layer of cells at the back of your eye (the retina).
Cataracts sometimes start to develop in a person’s lens as they get older, stopping some of the light from reaching the back of the eye.
Over time, cataracts become worse and start to affect vision. Eventually, surgery will be needed to remove and replace the affected lens.

So w are going to have fun as he can’t bend down and has to take it easy.

 

 

A Dairy Of A Mesowarrior Living With #Mesothelioma #Asbestos -A weekend away and Fresh Food from Thanet Earth

We finally got away for a weekend in a field with sunshine.

It has been so restful. It makes us smile that we had a huge field and yet campers hug fences but its great on the holiday rally at Quix with the C&Cclub. No 20 foot rule needed here there is so much space IMG_20170806_102607_jpgIMG_20170806_102618_jpg

I managed to give the M/H a lovely wash down and she still looks good. She is now a classis as VW don’t make monocot bodies any more. Why? I don’t know but they are so good for being water tight like a car. No seals to have water ingression.

I love the way she is a tardis and is so much larger in side than she looks.c15

Louis fits in Ok that’s all that matters. He loves his weekends away as he gets a lot of walking time.

We had a storm  Saturday afternoon but that soon cleared and dried up.

I love the farm shop as I have mentioned before. I never pack any food and buy it all there. The tomatoes come from Thanet Earth which has really grow and has taken over more land. http://www.thanetearth.com/   

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos – A news blog

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So much rain this year and so chilly. Today was high winds that it has ruined my Daisies and other plants. How can the rest of Europe be sweltering in record heat and we freeze. Oh the jet stream.

I wish someone would push it back up.

I have written an article September IASLC newsletter about Social Media hope they like it.

I received a wonderful vacuum cleaner. It is really for the asbestos industry but I saw it at ESS Safeforce Conference. I holds all the dust in so Ray with Perennial Rhinitis and a dog with very long hair moulting everywhere I thought it would be a good idea. I can’t wait for ray to do  a messy job out in the shed. ha ha !!

http://www.fencogroup.com/

I was shocked to read a report found in famous Museum of Royal Worcester porcelain museum, in Severn Street, Worcester. Ray and I have visited but really all these old buildings have asbestos in.

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http://www.worcesternews.co.uk/news/15449168.Asbestos_found_in_famous_porcelain_museum/?ref=fbshr 

I have been watching this building site unfold as I have travelled to London so many times in the last 8.5 years as I went first to St Barts and Guys with my Mesothelioma and now I talk about my story. I have become fascinated in this part of London a I visit many office’s in the area. I even have a Picture of Cheapside over my bed as a bed head. I do worry about Battersea Dogs home as it seems to be in the middle of all the upheaval but things are settling down now. It’s lovely to see the final picture . http://www.constructionenquirer.com/2017/07/31/mace-poised-to-replace-skanska-at-battersea-power-station/

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I love the Gardens on the roofs, there is a lot to do yet but they are really changing this part of London.

london 5                                The picture over our bed.

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A dilapidated pre-fabricated shack in south-east London sold for $1,153,680 how have they justified this but apart from that they are made from Asbestos. ??? because they were made of asbestos, they were too expensive to maintain.

Once bidding opened at $750,000 a flurry of bids saw it go under the hammer at $1,254,000. According to Chris Coleman-Smith, head of Savills Auctions, people were not messing around. The property drew a lot of interest, and the owner will look to capitalize on the area’s up-and-coming status for a return on their investment. The property, however, will need to be renovated before it can be lived in again. Its last tenants left in 2002 and the property comes without planning permission

http://www.thevintagenews.com/2017/04/29/a-dilapidated-pre-fabricated-shack-in-south-east-london-sold-for-1153680/

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As this is turning to be a sort of newsletter there was an article about Keytruda that I found interesting

The Keytruda Story

This is a good history of Keytruda, the Merck (NYSE:MRK) immuno-oncology blockbuster, from David Shaywitz. Most big drugs have a tangled history, and this one is certainly not going to break tradition. As witness:
It was discovered accidentally, by biotech scientists looking for drugs that would tamp down the immune response in patients with autoimmune disease, and would stimulate, not block, PD1. Even after a potent PD1 inhibitor was identified and recognized as a potential cancer drug, the research program had to fight for funding through two mergers and acquisitions. After the program finally wound up at Merck, in 2009, it was considered such a low priority that it was shut down and placed on the out-license list. A term sheet (valuing the program at next to nothing) was reportedly in place, but pulled at the last minute, as promising results from competitor Bristol-Myers Squibb (NYSE:BMS) motivated a reconsideration of the mechanism.
I remember telling one group leader at a former company, who was running another very odd and unexpected project, that if I were ever sitting in the audience at some dinner where he was getting a plaque and an award, I would throw my baked potato at him if he used the phrase “As we expected. . .” And he agreed that he would deserve some incoming spuds if that happened. In the case of Keytruda, the story goes back to 2003, and back not to Merck, and not to Schering-Plough, but to Organon, the long-gone drug division of Akzo Nobel. The story does not, at least at first, cover Merck with glory, although once they got moving, they did an excellent job. This is far from the only drug involved in a merger or takeover (in this case, two) that turned out to be much more important than the ostensible reason for the whole deal (which tells you something about our ability to do scientific and commercial forecasting).
It’s as much the story, though, of Bristol-Myers Squibb letting an opportunity get away from them with their own competing antibody, Opdivo, which had years of head start. As the article shows, even up until early last year, Merck looked like an also-ran, but Roger Perlmutter’s decision to resource Keytruda with everything possible turned out to be the right one. (Needless to say, if something unexpected had gone wrong, he would have surely been out the door, and presumably would have had plenty of company, too). But Keytruda really did work, the clinical decisions really were the right ones, and spending all that money and effort really has turned out to be the right decision. But there’s a lot of luck involved. If Merck had tried head and neck cancer patients earlier, for example, they would have run into trouble, since the antibody failed pretty conclusively in a recent trial. You can argue that that one was always going to be further down the list, but no one expected the numbers to be as bad as they were.

No, time and chance happened to them all. The Keytruda story is certainly about persistence, about risk-taking, and about a huge amount of hard work and tough decision-making. But while those are necessary, they’re not quite sufficient. No one likes to think about that, and it’s certainly a lot easier, in the wake of a success, to imagine that it was all due to clear-eyed foresight. But that’s almost never the case. Was Merck good, or were they lucky? They were both. And good for them.

https://seekingalpha.com/article/4093565-keytruda-story?auth_param=1dfb8l:1co3dfm:95156869bb477de095e65124591329a4&dr=1

 

 

A Diary of a Mesowarror Living With #Mesothelioma #Asbestos – We Went to LASAG Essex -A mad day today

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Every had a mad day like this when everything goes into a whirl

We had to go to Essex to attend a LASAG Support meeting.

Programmed the Sat/nav and set off in plenty of time.

A report on the radio said the Dartford Crossing had a broken down vehicle causing long delays. Oh dear.

Then the sat/nav said turn off at Canterbury Why!!! I checked and it was saying destination MARGATE ??

Ray has done a update and that always causes a problem.

Looked for my diary  I hadn’t taken my Diary with the instructions in so we pulled into a service station to go into Face Book where I knew the address was No signal went and rushed into the shop and bought a map.

I said we wanted Romford and the Toby is on the road When we got near Romford we asked a man where the Toby he sent us into Romford  to a wonderful shopping centre. Yes a Toby but No not this one said the Bar tender, she phoned another one and yes an Asbestos group is here. Wonderful directions and we found our Toby.

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Isnt it lovely that they back charities and have a lovely room for meetings I was very impressed.

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The meeting went very well and I met some lovely Mesowarriors and we exchanged our stories and discussed all the treatments.

The time flew by and we were told the road in front us was the A12.

We set off and the sat/nav said turn left. Err no road signs so we went left and we were heading the wrong way into Central London.

We took a turning Left and hoped we would be able to double back and get on the right road but the sat/nav seemed to be set on Non motorway.

We ended up going back through Dagenham and down to the A13 to the Shopping outlet at Lakeside.

We finally got onto the Queen Elizabeth Bridge and I want to through the sat/nav into the River Thames.

 I just can’t believe that so much can go wrong but we did end up laughing  🙂 JUST 🙂 🙂

We got home what a relief and we were still sane.

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For Sale I very naughty Sat/Nav

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos — Dave Staley’s gruelling 100-mile cycling challenge.

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Dave Staley, from Bramhall, was diagnosed with terminal lung cancer in 2015; he had a lung removed, and was told he had less than a year to live. Now Dave, who’s 41, is about to attempt a gruelling 100-mile cycling challenge (starting 30 July), defying medical predictions, to raise money for lung disease research.
Dave has mesothelioma, a terminal lung cancer related to exposure to asbestos. A year after completing chemotherapy, and after making the agonising decision to have his damaged lung removed, he will cycle 100-miles, from Queen Elizabeth Olympic Park, into the Surrey hills.
Dave’s ‘One Lung, One Life, One Hundred Miles’ cycling challenge will be raising money for two charities that invest in mesothelioma research: British Lung Foundation and Today was the last “big training ride” before the Ride100 in 2 weeks. It’s now rest and a few short rides to keep the legs ticking over.

He says :-
There are so many of you to thank on this journey, but just want to mention a few:
My wonderful wife(& kids) for being very supportive and becoming a cyclist widow -Todays 5hr ride took me to a grand total of 104hrs & 40min of training – an average of 7hrs per week with a total distance of 1341 miles travelled!
Jane at cyclebuddie.co.uk for all the weekly training sessions and expert advice to get me up the hills currently 200ft short of hitting the magic 50,000ft of total climbing!
Simon and Emma for completing the 100 miles last year and inspiring me to do it this year (though maybe I should not thank you until it’s over!!!)- Simon & Steve (& their wives and families too) for the constant support and encouragement and whom will get me over the finish line in 2 weeks!!

I have met Dave many times as we both are involved in Mesothelioma UK. He is a larger than life character and so young to be suffering with Mesothelioma. It does mean he was fit for an operation as a Lung was removed. It gives a better chance of survival and if the disease is in just one lobe it is a great success.

When you have young children it must be even more scary for a Mesowarrior as you worry whether you will see your children grow up. Dave has that chance now and I pray that continues

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They are so lovely and lively.

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Maybe they should join Dad on the ride.

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Good Luck Dave from all the Mesowarriors

If you want to help Dave here is his just giving page

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=DavidStaley

Dave’s Blog https://davestaleyblog.wordpress.com/

I have been to-day 1 of Dave’s blog. This is where I first came across him and I thought then what a brave young man.

I loved his sense of humour. I admired the way he came through the Op and was amazed at how quickly he went back to work that was a brave thing to do but proved just what fight was inside our Mesowarrior.

Hi All
Having made the decision to go through with the full EPP – lung removal, it was wonderful to be contacted by other ‘Meso Warriors’ (America, Australia, U.K. ) via the blog. I never thought it would have the impact it has. They have had the same op, but 10 & 13 years ago….. Amazing stories, and like them I will still be writing these blogs in 10+ years time.(Sorry you maybe bored with them by then….)
Having made the decision, it was great to relax and celebrate turning the big 40! Ali booked us a meal at hawksmoor (best steak house in Manchester!), followed by nice surprise in the evening. Ali then booked for the 4 of us to go to langdale ( Lake District for the weekend). We had a great time, kids enjoyed swimming; we enjoyed 2 pub meals @Wainwrights & walks; and then a day with the stanley clan in Ambleside. Thank you Ali you did truly spoil me.
Monday was all about getting ready for hospital visit, planning for the week ahead, and seeing friends. Thank you to everyone for kind offer of help, and we will be contacting you all to take you up on it (if we haven’t already….). It was also an emotional day as reality starts to hit home, and the fact I won’t be seeing the kids for 7-14 days. Thoughts of ” I may never see them again (due to high risk of surgery) has crossed our minds, but I remain positive this will not be the case, due to the trust in the surgeon and his team in Leicester, and the love, prayers & the support from every single one of you. This is helping us be so positive.
Today we dropped kids of at school who went in as normal, and it was us adults who were more emotional/worried. We have told the kids Daddy has a poorly lung, which the doctors are repairing. Joshua said to his Aunty ( who is a nurse!) “can you not do the operation, and Daddy stay at your house in Liverpool”! If only it was that simple….
This morning I also received 2 emails from Everton football club, one from Graham Stuart and the other Graeme Sharp. I was beaming, and the fact they had mentioned the blog made be very proud & emotional…..also on recovery I may get invited to meet the players…..Thank you to whoever has arranged this….
So I’m now enjoying a good meal (more steak and more beer), whilst writing this blog. We have met Dr Waller and his team this afternoon who have made us very relaxed (as can be) for tomorrow. He advised he discussed my case at a Meso conference in Spain, with worldwide experts. Majority view was to go for full EPP. He advised Leicester is currently treating the most Meso patients worldwide!! I feel so lucky that I have had world specialists looking at my case, and at the best hospital. Due to the major surgery I will be having an epidural, along with any other strong drugs to numb the pain…”1000 X stronger than morphine” was said!!
So tomorrow I will be given sleeping tablets at 11am and go into theatre midday. The operation will be 3-4 hrs, and then into recovery. As a precaution I may go into intensive care, but more likely HDU. I should be out of recovery between 7-8pm ish!! I will not eat for 48 hrs, so hopefully by Saturday I will start to eat and have some movement…..Ali or my sister will update Facebook to let you know, and you will have another blog from me early next week. –So that’s me off now to look at the desert menu, drink with my gorgeous wife but once again, a massive thanks to you all for the love, support and prayers.
Dave & Ali X

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