A Mesowariors Diary Living With #Mesothelioma- Ray Publishes His New Book -We say Goodnight to 2 Very Brave Mesowarriors,The garden has had a tidy up

Ray has published a new book 

Paper Back Price: £3.00 (excl. VAT)

My story of how innocently we can contract a deadly disease from everyday items in and around your home and work place. For me it brought a 60 year bombshell,heart ache and pain. When you hear your wife has only got 3 months to live and its your fault, that is too much to hear

http://www.lulu.com/shop/raymond-nye/the-silent-killermesothelioma/paperback/product-22769018.html

eBook (PDF), 36 Pages

Preview

Price: £1.99 (excl. VAT)

http://www.lulu.com/shop/raymond-nye/silent-killer/ebook/product-22768355.html

I have sadly lit the Mesowarrior candles twice in one day.

I had a message last night for Cat who has been talking with me for a long time as we work out getting Keytruda private for her Gran. She is a very caring Grand Daughter and we had made arrangement’s to meet at the TUC  Mesothelioma Action Day on July 1st  but it was not meant to be.

Cat Gran was being made comfortable and yet bless her she was thinking of me and telling me to carry on with my fight Cat sad — Nan is leaving us now. Her choice. She was looking forward to meeting you and said she hopes you continue your good work for a long time.

That really got to me and we carried on talking until we went to bed .

Then this morning Cat gave me the sad news her Gran had gone.

I lit the Mesowarrior candle with the words

Our Deepest Sympathy
Grieving couple
To send our deepest sympathy
Just doesn’t seem like enough.
We know how your grief must burden you,
How this time must be so rough.

But try to believe in your heart of hearts,
That your pain won’t last forever,
That sadness will lighten a little each day,
and you’ll eventually feel much better.

When that day comes, your memories
Will focus on the good, not the bad.
Instead of feeling burdened by tears,
You’ll cherish the happy times you had

We also had mesowarrior Claire sadly her dad, Keith Jaycock passed away early hours of this morning after being in hospital for a week. This is so sad as we are losing to many Mesowarriors again and I light the Mesowarriors Candle again for another brave Man. We have to halt all this unhappiness
Claire We are thinking of you during this difficult time. ❤
I miss you more than I can express
My love for you will never grow less
I keep trying to imagine how I will go on
I realise tomorrow is another dawn

I know you’re in heaven above
Looking down on us with all your love
Only to whisper in our ear
Remember that I’ll never stopped loving you dear

I’ll always remember the good times we had
Remember the man, my wonderful dad
I’ll remember you each and every day
And if I need to talk to you, I’ll just sit down and pray

One day we’ll be together again
To talk about all the places we been
Until the time I’ll always treasure
Having you for a dad was such a great pleasure

By Debra Marie Stratton-VanBuskirk

I share these with you as you can see we have so much fighting to do to get Research coming through and to fight this disease. so My speech will be about Research and how we need funding. I have the speech already and I’m very proud of it one of my best ones I believe.

 

 

Anyway life goes on for us and we have had lovely sunny weather in between the very heavy showers.

Gardening has been underway and we have pottered around and feel straight again although the plants have grown so big with all this free watering.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We went shopping and B&Q Has had a flooded car park all year but today it was bad and has taken up a lot of spaces

I don’t like the telly at the moment– Oh dear to live in the UK now we are scared to utter one word about anything political as you get jumped on. I think its very sad and I hope they get with forming governments and showing they are in charge as I dread to think how it will go. People fighting in the streets and on Face Book is very sad.

 

Diary Of A Mesowarrior Living With #Mesothelioma -A Study Day With Mesothelioma UK at Duxford

We travelled to Cambridge on Thursday to camp at Appletree Caravan site and what a lovely site it was

Very flat and it lots of hardstanding which we were so pleased when a huge storm came over. Where the toilet block is Ray found it was under water. I had wondered as I saw a trailer tenet travelling- as I thought -on its own but could then see a small tractor pulling it. Everyone came over to our side where we were OK. It was a great night sleep and then we woke up early to go back a juction of the M11 to Duxfiord.

What a great way to go to a meeting.

A really lovely Conference Centre within the Duxford Museum. ray was able to wander around freely to look at the planes.

We all sat down in a room and the Mesothelioma UK meeting -Are we making Progress started.

Dr Robert Buttery from Papworth headed the meeting. We had already met at iMIG but then I had met half the room there so it was so friendly.

Dr Najib Rahman from Oxford Respiratory Trials Unit,talked about Diagnostics and Bio markers . Seems to me we just cant beat the  pleurodesis talc op.

Why some Ops dont work is because the lung is trapped and doesn’t inflate fully so it doesn’t stick to the chest wall. and so a chest drain is needed permanently.

The trial of whether .they should use radiotherapy on the port site to stop seeding in the wound was frustrating see  The Pit Study 374 in the Lancet. http://bmjopen.bmj.com/content/6/1/e010589.full

Dr Doris Rassi gave a talk on Progress in Pathology and we are a long way fro being able to  have an early warning system of Mesothelioma through blood tests.

After a break for coffee Dr Peter Szlosarek gave a great talk on Oncology -moving points

He spoke about all the trials he is working on and making progress.

and DR Robert Rintout also did a trials update. We are moving into an exciting time and so much is being done to fined the answers.

After Lunch Liz Dawlinson gave a great speech of the role of the clinical nurse

and Helen Clayson  from Glasgow Caledonian Hospital (she wrote the lovely book  for Mesothelioma UK which  is giving so much help to mesowarriors and is free,

She talked about End of life care.

Then we had a Coroner David Heming and I was dreading listening to him. BUT he was brilliant. He read a write up from a carer and what she had gone through then the feeling of alone as she travelled with out her loved one by her side.

I was later at question time to be able to ask him about making sure they always put mesothelioma as the cause of death.

he also spoke about Post Mortem’s and he said it isnt necessary he goes by scans and

bi-ops and said it is rare for the need of a PM.

That going to court is made as pleasant as they can in the circumcises which is something all carers dread.

Also a very interesting point is something I had been thinking about and that is I needn’t leave my whole body to science just my left lung. I have given it a lot of thought and think it would be Ok to have that go I have mentioned it to Ray but he doesn’t want to talk about it so its something to add to my end of life plan at the Hospice.

So the meeting came to an end and we had really enjoyed the day.

Liz and I went outside together and Ray had been walking Louis so he was ready to go home. As Liz was looking at the motorhome the heavens opened she ran to her car and I tried to dive in the M?H slipped on the steps and fell in a bush. So funny and I got drenched. The rain is so heavy when it start. We soon travelled out of it and came back to sunny Kent.

I would like to thank Mesothelioma UK for allowing me to attend I do find it so Interesting and love the meet ups with such lovely people and thank you to the sponsors AstraZeneca UK Ltd,Medela UK LTD, Pfiser Ltd and Rocket medical but most of all Irwin Mitchell Solicitors who are such a lovely bunch of people.  Well done to everyone.

Cambridge study day: ‘Mesothelioma – Are we Making Progress’. Mesothelioma UK stand and our own Liz Darlison presented on the Role of Specialist Nurses

 

I did come home to the sad news of the death of a lovely mesowarrior RIP

He was the wonderful father of  Jo Robinson, who I have been chatting with since August 2015, was kind enough to message me. that James Lavin ( everyone called him Jimmy. He was a true Irish gentleman from Mayo) Died on Wednesday at home. So raise your glass to a lovely man he will be sorely missed. RIP Jimmy
When we are weary and in need of strength,
When we are lost and sick at heart,
We remember him.
When we have a joy we crave to share
When we have decisions that are difficult to make
When we have achievements that are based on his
We remember him.
At the blowing of the wind and in the chill of winter
At the opening of the buds and in the rebirth of spring,
We remember him.
At the blueness of the skies and in the warmth of summer
At the rustling of the leaves and in the beauty of autumn,
We remember him.
At the rising of the sun and at its setting,
We remember him.
As long as we live, he too will live
For he is now a part of us,
As we remember him.

Adapted from the Yizkor Service

 

 

A Special Blog to Celebrate Keytruda and Merck (MSD) #mesothelioma #asbestos

I thought it would be good to bring together all I knew about the man behind Keytruda.

Merck has really worked hard at this and to think when a man sat in his Laboratory and first made this drug, with the help of mice, he put it to one side and didn’t know what to do with it until another scientist found it on the shelves of a fridge and realised just what it could do. Amazing !!!

 

The Latest report from Merck that Keytruda is being passed for Lung Cancer so adding another cancer to the list with Melanoma had me thinking about the origins of the wonder drug

https://www.thestreet.com/story/13609867/1/merck-extends-cancer-immunotherapy-reach-to-first-line-lung-cancer.html

Merck’s flagship cancer immunotherapy Keytruda delayed the re-growth of tumors and prolonged survival in patients with newly diagnosed non-small cell lung cancer compared to chemotherapy, the company said Thursday.

Gregory J. Carven Ph.D. Vice President of Antibody Discovery and Protein Sciences, Scholar Rock, Inc.

Age	Total Calculated Compensation	This person is connected to 0 Board Members in 0 different organizations across 1 different industries.
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Background

Dr. Gregory J. Carven, also known as Greg, PhD, has been Vice President of Antibody Discovery and Protein Sciences of Scholar Rock, Inc. Dr. Carven has more than 15 years of antibody discovery and development experience, including his role as co-inventor of Keytruda(R) (pembrolizumab), the first PD-1 inhibitor for cancer immunotherapy to receive FDA approval. In his leadership role at Scholar Rock, Dr. Carven direct the Scholar Rock’s discovery and design of therapeutic antibodies as first-in-class niche modulators for fibrotic, musculoskeletal and autoimmune diseases. Dr. Carven is an acknowledged leader in the discovery and development of antibody therapeutics. A particular highlight of his more than 15 years of antibody discovery experience was his leadership of the discovery and preclinical development of Keytruda(R) (pembrolizumab; MK-3475; anti-PD-1) from its invention through to IND filing. He was Head of hybridoma research within Pfizer’s Global Biotherapeutics Technologies division and was responsible for discovery and engineering of antibodies and antibody binding domains for a wide variety of therapeutic areas. Prior to joining Pfizer, Dr. Carven held positions of increasing responsibility at Merck Research Laboratories (formerly Schering Plough Research Institute and Organon Biosciences), and was a scientist at Phylogix, Inc. Dr. Carven received his PhD in Biological Chemistry from the Massachusetts Institute of Technology, and continued his research on the characterization of conformational changes in class II MHC molecules using conformation-specific monoclonal antibodies at the University of Massachusetts Medical School.

http://www.bloomberg.com/research/stocks/private/person.asp?personId=278066821&privcapId=226876975&previousCapId=226876975&previousTitle=Scholar%20Rock,%20Inc.

History

Pembrolizumab was invented by Gregory Carven, Hans van Eenennaam and John Dulos at Organon Biosciences.^[5] MRC Technology humanized the antibody pembrolizumab for Organon in 2006.

On September 4, 2014 the US Food and Drug Administration (FDA) approved pembrolizumab under the FDA Fast Track Development Program.^[6] It is approved for use following treatment with ipilimumab, or after treatment with Ipilimumab and a BRAF inhibitor in advanced melanoma patients who carry a BRAF mutation.^[7] It is marketed by Merck.

On October 2, 2015, the FDA approved pembrolizumab for the treatment of metastaticnon-small cell lung cancer (NSCLC) in patients whose tumors express PD-L1 and who have failed treatment with otherchemotherapeutic agents.^[8][9]

Pembrolizumab was priced at $150,000 per year when it launched.^[10]

Mechanism of action

Pembrolizumab is a therapeutic antibody that blocks the inhibitory ligand of programmed cell death 1 receptor located on lymphocytes. This receptor is responsible for inhibiting the immune response to cancer cells which express programmed death-ligand (PD-L1 or PD-L2). Normally, this effect is necessary to avoid inappropriate overreaction, such as an auto-immune disease, in healthy individuals.^[11] In cancer patients antibody blockade against this receptor such as with Pembrolizumab reinvigorates the immune system, allowing it to target and destroy cancer cells.^[12] Pembrolizumab is one of a number of closely related therapies dubbed checkpoint therapy.

Clinical trials

As of 2015 a large phase I clinical trial produced response rates of 37–38% in patients with advanced melanoma and an overall response rate of 26% in patients who had progressive disease after treatment with Ipilimumab.^[13]

Also in 2015 the drug was in Phase II clinical trials for non-small-cell lung cancer (NSCLC) in patients with oligometastatic disease.^[14]

The KEYNOTE-012 phase IB study is testing pembrolizumab for triple-negative breast cancer (TNBC), gastric cancer, urothelial cancer, and head and neck cancer.^[15] It reported encouraging interim results (eg in TNBC) in 2016.^[15] The ongoing phase II KEYNOTE-086 study is evaluating a 200-mg dose of pembrolizumab, given once every 3 weeks, in patients with TNBC.^[15] 

 

The Fred Hutchinson Cancer Research Center has tapped well-known drug investigator Gary Gilliland to become its new president. Beginning on the first work day in January, Gilliland, who recently completed a stretch at Merck ($MRK) as head of oncology drug research, will take the helm of one of the country’s top cancer research institutes. Among other things, the Hutch has played a leading role in launching the CAR-T and TCR player Juno, which is now going public. Gilliland’s lengthy resume includes a professorship at Harvard University and a stint at the Howard Hughes Medical Institute. And he says the timing is right to focus on new ways to cure cancer. “This is the perfect time and perfect place to develop curative approaches for cancer,” said Gilliland, a physician-scientist. “Everything I’ve done in my career has pointed here.” Release

http://www.fiercebiotech.com/financials/fred-hutchinson-brings-on-ex-merck-cancer-r-d-chief-gilliland-as-president

Then this story emerged around the world and we became interested in Keytruda But by this stage I was on the trial MK3475-28 after hearing so much about the drug for sometime through Immunotherapy was becoming the in word. The treatment that was going to give Mesothelioma the cure. Little did I know that I would be playing such a huge role in the story.

Formula One Melbourne Grand Prix: Race supremo Ron Walker beats cancer

Date

March 12, 2015

• 

Ron Walker is satisfied he has beaten the cancer that 2½ years ago riddled his body. Photo: Chris Hopkins

Australian Grand Prix supremo Ron Walker has been declared cancer-free after a nearly three-year fight for his life.

As he prepares for his final Albert Park Formula One race as chairman of the Australian Grand Prix Corporation, Walker revealed his remission was confirmed late last year following treatment with an experimental drug in the US.

He was satisfied he had beaten the cancer that 2½ years ago riddled his body, because scans and blood tests had cleared him of the malignant disease.

“The doctors in America announced me to be cancer-free 12 weeks ago, so I’m the luckiest guy that ever walked,” Walker told Fairfax Media.

His recovery has defied a grim diagnosis by the Peter MacCallum Cancer Centre in November 2012 that he would not make Christmas that year because radiation treatment and a conventional immunotherapy drug had failed to arrest the cancer.

“They said at Peter MacCallum that they never thought they’d see this result in their lifetime, so I must’ve done something right,” Walker said. “I’m very lucky it’s gone. It was in my brain, my bones, my lungs, my heart, everything.”

Walker, 75, was found to have a melanoma on his forehead in February 2012, but late that year the skin cancer had spread throughout his body.

Along with an adverse reaction to a local drug treatment, the life-threatening extent of the cancer drove him to secure a place in a trial for a new immunotherapy drug called Keytruda in Los Angeles.

“If I had stayed in Melbourne and just done nothing, I wouldn’t be here today talking to you, because the drug they offered me was shocking,” Walker said. “I really am genuinely grateful that my life was saved.”

While he was wealthy enough to afford the regular trips to LA in 2013-14 and the cutting-edge drug treatment, which he admitted “wasn’t cheap”, he campaigned to have Keytruda approved in Australia at an affordable cost to cancer patients.

The former lord mayor of Melbourne and long-time federal Liberal Party grandee has successfully lobbied Canberra for the drug – which was fast-tracked onto the American market last September – to be available in Australia on the Pharmaceutical Benefits Scheme.

“It’s given hope to people who thought they were going to die,” Walker said. “Now they’re not going to die. It’ll be available in the middle of March to everybody.”

He said prevailing on his Liberal Party contacts in the federal government, including Prime Minister Tony Abbott, to make Keytruda available and affordable to everyone was his way of helping other less fortunate cancer victims.

“People were dying around me and their parents were ringing me up or their wives were ringing me up, saying, ‘My husband has stage-four melanoma, what can you do to help?’ Well, I couldn’t do anything to help unless I got the drug at the right price through cabinet.”

Walker, who will step down as chairman of the AGPC after 20 years following Sunday’s F1 season-opener at Albert Park, dismissed his fortune – estimated to be in the hundreds of millions of dollars – as the live-or-die difference.

“Leave the money aside,” he said. “I could’ve got a cheap air ticket. If I didn’t have a dollar, I still would’ve gone on a cheap flight somehow.

“If I had’ve been a normal guy on the street, I would’ve mortgaged something if I had something to mortgage – or borrowed the money from a mate.”

However, Walker conceded his connections in high places, made during nearly three decades negotiating major event deals for Victorian governments of both political persuasions, opened doors for him to get into the US trials of Keytruda.

“I was just lucky enough over the years to accumulate a lot of contacts,” he said.

With the backing of then premier Jeff Kennett, Walker was instrumental in “stealing” the Australian Grand Prix from Adelaide in 1993, with Melbourne taking over the race at the revived Albert Park lakeside circuit – used for international motor races in the 1950s – in 1996.

Although his battle with cancer has taken its toll on his 198-centimetre frame and left his once luxuriant head of red hair grey and wispy, he never lost his commitment to the grand prix.

“Working for Ron in that period of time, nothing’s changed as far as his continued passion for the event, and the ideas and the frequency of those ideas,” AGPC chief executive Andrew Westacott told Fairfax Media.

“He continued to put Melbourne first and the grand prix first, and all the ideas that are going to be making the event better than any event on the F1 calendar.”

Walker expressed confidence that his successor as chairman of the AGPC would guide the organising team to maintain the high standard of the race, which was last year renewed from 2016 to 2020.

“Whoever follows me will do as good a job, if not better,” he said. “I’m very proud of the succession program.”

Read more: http://www.smh.com.au/sport/motorsport/formula-one-melbourne-grand-prix-race-supremo-ron-walker-beats-cancer-20150312-142bh2.html#ixzz4C0Ztk1TA
Follow us: @smh on Twitter | sydneymorningherald on Facebook

I had been invited to iMIG  conference and Prof Dean Fennel wanted me to Announce my results at this point so I hang back as long as I could. My Blog tells the rest of the story

https://rayandmave.wordpress.com/2016/05/07/a-diary-of-a-mesowarrior-living-with-mesothelioma-imig-2016-photos/

Merck’s (MRK) flagship cancer immunotherapy Keytruda delayed the re-growth of tumors and prolonged survival in patients with newly diagnosed non-small cell lung cancer compared to chemotherapy, the company said Thursday.

The new phase III study results from Merck are significant because they represent the first time that a drug belonging to the so-called checkpoint inhibitor class of cancer immunotherapies has demonstrated superiority over standard of care in the treatment of first-line lung cancer patients.

Lung cancer is the most prevalent cancer globally, with more than 200,000 patients in the U.S. and 1.5 million patients globally diagnosed each year. As such, lung cancer is an important commercial market for the drug companies developing new therapies which harness the immune system to target and kill cancer cells.

Cancer immunotherapy sales will reach $34 billion to $35 billion by 2026, of which almost half will come from lung cancer, predicts Leerink, the health care investment bank.

Merck is the first of the Big Pharma companies to demonstrate the efficacy of a checkpoint inhibitor in newly diagnosed lung cancer, but it will likely have company soon.

Bristol-Myers Squibb (BMY) is expected to announce results from a phase III study of Opdivo in first-line lung cancer in the third quarter. Roche (RHHBY) is also making an aggressive push with its own checkpoint inhibitor into lung cancer.

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For now, Merck is not saying much about how well Keytruda performed in the phase III, study known as Keyote-024. The study compared Keytruda against a doublet chemotherapy in patients with non-small cell lung cancer who had not yet received any systemic therapy.

Keytruda beat chemotherapy on the study’s primary endpoint of progression-free survival and the secondary endpoint of overall survival, the company said. The magnitude of Keytruda’s benefit was not disclosed Thursday, but Merck said the data are strong enough to support approval filings in the U.S. and Europe.

Importantly, the patients enrolled in Merck’s Keytruda study also had to have lung cancers that expressed high levels of the protein PD-L1, defined as a tumor proportion score of 50% or more.

Checkpoint inhibitors like Keytruda and Opdivo work by blocking the interaction between PD-L1, a protein found on the surface of tumor cells. with PD-1, a receptor found on immune cells. Blocking the PD-1/PD-L1 connection allows a patient’s immune system to recognize and kill cancer cells.

Bristol is enrolling a larger, more inclusive group of first-line lung cancer patients with tumors expressing lower levels of PD-L1 in its studies of Opdivo. Depending on the study results, this may give Bristol a competitive advantage in the commercial market.

That’s what has already happened in the treatment market for more advanced, second-line lung cancer, where Bristol enjoys a significant market share advantage over Merck.

You see Jim Cramer on TV. Now, see where he invests his money. Check out his multi-million dollar portfolio and discover which stocks he is trading. Learn more now.

Adam Feuerstein writes regularly for TheStreet. In keeping with company editorial policy, he doesn’t own or short individual stocks, although he owns stock in TheStreet. He also doesn’t invest in hedge funds or other private investment partnerships. Feuerstein appreciates your feedback; click here to send him an email. https://www.thestreet.com/story/13609867/1/merck-extends-cancer-immunotherapy-reach-to-first-line-lung-cancer.html

A Diary Of A Mesowarrior Living With #Mesothelioma –Here Is My Small Part I played In the Israel TV Film About Keytruda -Life Is Too Precious

Life is too precious

Special Project Fact: One drug breakthrough gives new

hope to thousands of cancer patients, but also threatens to destroy them financially. Ronnie Coben and Noa Saturn accompanied the three heroes in life chance

http://www.mako.co.il/tv-ilana_dayan/2016/Article-22dabfd696e5551006.htm&Partner=facebook_share

At last I have the link to the program that I appeared in with my dear friend Nika. Im on at 20-15 but the whole program is interesting even if we cant understand the language

She had contacted me December 2015 with a message

Dear Mavis, My name is Nika, I am 35 and I have 4th stage Mesothelioma almost 6 years. I am struggling. However I can’t get carbo-pemetrexed because it is my third chemotherapy during these years, I have too high toxicity already and my body can’t resist to this treatment anymore. I am looking the trials with opdivo or keytruda. I have EU citizenship and I came to UK to find the way to survive. Please help me to contact necessary people. Without national insurance no one can’t help me. Do you know any contacts who I can speak with, who can help me? Thank you so much for your help and assistance.

She told me she had lived in Lithuania, than in Israel.  and like myself , when on Chemo she had  exceeded toxicity in her body and there was no more chemo for her, With pemetrexed it is slowly growing So I told her that the best thing would be to get in contact with MSD Israel as I had read they are investing Imunotherapy in Israel .

At the end of January I Nika was so happy –Dear Mavis, I have got great news! The trial with keytruda is worldwide. I could participate in Israel too. I am really happy about that. Mavis, do you know something about keytruda action vs fertility? Do I need to preserve my ovaries with decapeptyl 3.75 as I did it when I had chemotherapy? Have you heard about keytruda action and reaction to the young women?

This wasn’t a problem I needed to worry about so I advised her to contact MSD again and ask about fertility.

In February Nikas told me  I am waiting for the answer from merck, thus week my pathology will be sent to US. During one month they should give me an answer if I am starting trial.

She then told me she had been interviewed the main Israel’s channel. They are making report about Keytruda. The target is to explain to the ministry of health how important would be to enter this encouraging drug to health basket. That people would have possibility to get it for free or for less money. In the interview I told how I found you and you helped me to make a right choice. Maybe you would agree to act in a scene how we are talking via Skype about keytruda? They would like that people would hear that from you, that it helped you, that you are alive and helping people all over the world. Reporters are very nice people. They are trying to make movie about keytruda as soon. Would you agree to participate in this interview, Dear Mavis? Reporters will talk with you later and explain if you will accept this. That’s because of you. You gave me a hope and underlining what I need to do.Any answer is ok.

So of coarse I answered I would be delighted and we waited months for it to hapen.

Nika then contact again  to say she had done her part The main thing they want to explain and to show how critical to some people to get this treatment if they do not have money to pay for it even.

We did our Skype together and Nika questioned me and I answered. It was chaotic really with the camera man walking in front of the camera but of coarse I knew they would edit. Now it has been shown on TV in Israel I realise they have edited so much and I have only a short peace but I really do not mind. Just playing a small part in such a wonderful film of three courageous young people –If only I could understand what was being said. ha ha !!

I get the jist of it and the word Keytruda is being said over and over again. There is even a small clip showing Keytruda being Manufacturing and the bottling of the drug from the vats -just as MSD had told me, this is done in Ireland.

Nika has had her 5th injection no so I pray she is doing well. It has shown how We are struggling to have more of the drug in trials and how so many Meswarriorsa around the world are struggling to pay privately for the drug as they are in UK, US and Australia.

Nika has just written an update for me -her side of the story

Actually, I was looking information about Mesothelioma and keytruda trials all over the world. I was in UK and I was looking trials in UK. I found information about Mavis Nye with Mesothelioma and I contacted with you. It was on 30 of December. On the 1st of January you wrote me that you almost clean now. I started crying of happiness because I never knew that there is an exit with our diagnose. Than you wrote me addresses in Lithuania but I didn’t tell you that I moved to Israel. I have possibility to move to Europe if it is needed. Than we tried to find MSD in Israel but there were no trials with keytruda. I proceed searching. As your story was very same to mine. I was sure that it will works for me too. I tried to speak with the money fund that helps to find investments.it was really hard I thought I am going crazy. My doctor told me that he can’t write me prescription that I need this treatment because he scared of something in this biurocracy system. Just can’t…after 3 month running writing a lot lot of email everywhere…nothing moved. Trial in UK should open. I started to think how to get there….and suddenly after the Medical cancer conference I am getting an answer that trial with keytruda will open soon in Israel! It looks long 3! months of waiting…because I didn’t know if they will accept me in

 My doctor didn’t help me at all. I was looking for researchers contacts to ask them if they will agree to give me a chance to try to win this ‘lotery’

 My dear, Mavis, you gave me a huge hope and power to act and not to give up

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma -Back To The Royal Marsden For 2 More Keytruda Merck Have Published A Report Of My Trial for Lung Cancer

I really didn’t want to get up to travel to the Marsden. I thought this was all finished and here I was alarm clock shouting at me to get up 5am

.

The traffic was good and we got there far to early so we had a coffee and sat and waited for 8pm. The night staff were soon on and gave me a great welcome surprised to see me again. Sitting in the waiting room and all the staff as they came in were really happy to see me again and i had to explain why all the time.

Called in by Rex he was so amused and told me to take it as a bonus as he too worked it out I had done 52. So he put a canula in and drained my blood from me filling up my 7 phials . Blood pressure and temperature and weight next.

Back to waiting room where Nicky the receptionist for rehab walked in and just was ecstatic to see me and Ray again. Oh I have missed them all lots of hugs and kisses and a coffee shoved in my hand.

The Doctor called me in and said Merck want me to have the two infusions so that was it.

I asked about my scan and he looked on the computer and said its all fine remission it is. Oh how wonderful to hear him admit that. Everyone has been too scared to call it that as it just isn’t a word they have been able to say with Mesothelioma.

So he approved my drug and we went back into  the waiting area and chatted to Nicky as she has been putting The Mesothelioma UK  book out for me and also Mesowarriors that have been going for their treatment have been collecting them.

I took a few down to the large waiting room in the clinic area and placed them on a table there as that’s where people get the devastating news of their cancer.

We sat around and a man and his daughter, that had come up in the lift with us. came into the room. I just knew he was a warrior in the lift, but didn’t like to ask, he told me he knew me. His daughter has been emailing me and I got him to go to the Marsden through her. It’s lovely to meet the faces behind the emails. Not everyone is on Face Book  so my blog is great to link people up to me.

He has had to give the trial a rest as his white blood cells are too high. They want that to settle down again.

I loved the positive attitude and he even works through the illness, that amazes me as I don’t know where he gets the strength to do that.

His daughter had phoned her sister to say that I was there and she was so upset she wasn’t there to meet me, so we had to do a photo for her. it really tickles me this friendship of the Mesowarriors. These two sisters are going to mix in well with out Mesowarriors that go away for fun and laughter as we do. Mind you Ray wasn’t a laugh he was asleep all the time we had been talking. He has a special chair there and once he is in it he sleeps.

At last my drug was made up and I was able to go into the treatment room where  Rex put the drug up and I was once again getting topped up

At last I could go home and back to a Friday on the M25 and the struggle through the traffic.

We got home and I dived out and collected Louis and we went off to the park to let him have a good run

Merck Have Published results of my Trial for Lung Cancer that is interesting

Merck (NYSE:MRK) looks like it will win the race to have the first immunotherapy drug to gain Food and Drug Administration approval to treat newly diagnosed non-small cell lung cancer patients; but don’t count rival Bristol-Myers Squibb (NYSE:BMY) out just yet.

In a clinical trial called KEYNOTE-024, Merck said that patients receiving Keytruda fared better than patients who received chemotherapy, the current standard of care. The drug extended both progression-free survival (PFS), which measures when a tumor starts growing again, and overall survival.

Merck didn’t put any numbers to those claims. It’s waiting for a medical meeting to disclose the extent that Keytruda was able to extend PFS and overall survival. The European Society for Medical Oncology meeting in October would be one logical place to present the data, although I’m sure investors would prefer to see the data before then.

To screen or not to screen

Keytruda and Bristol-Myers Squibb’s Opdivo both bind to a protein called PD-1, blocking the interaction between PD-L1 on tumor cells and PD-1 on immune system cells called T lymphocytes, which normally tells the immune system not to attack the tumor cells. In the presence of the drugs, the negative signal is blocked, and the immune system is activated and attacks the tumor.

Both drugs are approved for later-stage lung-cancer patients, but Merck screened its patients for PD-L1 expression, and therefore is only approved for strong expressers of PD-L1. Bristol-Myers Squibb skipped that step, and still saw an effect, so Opdivo is approved for a larger number of patients, and doctors don’t have to screen for PD-L1 before using the drug.

In KEYNOTE-024, Merck took the same approach as before, looking at the expression of PD-L1 lung-cancer cells, and only enrolled patients with tumors expressing high levels of PD-L1, defined as a tumor proportion score of 50% or more. Bristol-Myers Squibb is also running a trial in newly diagnosed patients, called CheckMate 026, with data due this year, but its trial allows for all patients to be enrolled if the initial cohort of patients with high PD-L1 sees a benefit from Opdivo.

Combos to come

It may not matter which drug extends overall survival as a monotherapy, or whether Bristol-Myers can capture more patients by not requiring screening, because both companies are running clinical trials testing the drugs in combination with other drugs in newly diagnosed patients. Merck is testing Keytruda in combination with two different types of chemotherapy in newly diagnosed lung-cancer patients in clinical trials called Keynote-189 and Keynote-407.

Likewise, in a clinical trial dubbed Checkmate-227, Bristol-Myers Squibb is testing Opdivo in combination with chemotherapy in newly diagnosed lung-cancer patients. As part of that trial, other patients will get Opdivo in combination with Yervoy, another immunotherapy sold by the company.

If all that competition wasn’t enough, Roche is testing its immunotherapy Tecentriq in lung cancer. The PD-L1-blocking drug has already shown good results in bladder cancer, having been approved for that tumor type in May.

Congratulations to Merck for scoring the first punch in round two of this lung-cancer fight,. Investors, however, should keep in mind that this round isn’t over, and the battle is a 10-round bout where neither drug is likely to win by KO.

Brian Orelli and The Motley Fool have no position in any of the stocks mentioned. Try any of our Foolish newsletter services free for 30 days. We Fools may not all hold the same opinions, but we all believe thatconsidering a diverse range of insights makes us better investors. The Motley Fool has a disclosure policy.

http://www.fool.com/investing/2016/06/16/merck-co-inc-wins-first-round-of-immunotherapy-lun.aspx

A Diary of A Mesowarrior Living With #Mesothelioma FRom #Asbestos-Im On Israel TV Tonight, A surprise Call from the Royal Marsden 2 more Keytruda’s

Exciting time as tonight I’m on Israel TV. It was a Skype Interview I did with a dear friend who I had helped to get onto Keytruda and she was asked to talk about it on TV.

I will have a link when they put it on-line but until then I have had to ask friends if they have contacts in Israel to tell me how it all goes..

Message from my dear Isralian friend Niki —-the program we filmed will be translated tomorrow at 22.10
they told me that there will be an episode with you
it should be several days after online, asap I will sent it to you —-We are on Israel TV at last —-
Last year we hear at least once a week on “the new medicine that conquers cancer”. The last few months I went out, along with Noa Saturn, following the story of one of those drugs, showing as “ACE” in front of the number 1 Killer in the world. Hqytrwdh managed to cure terminal (meanwhile mostly certain forms of skin cancer, kidney and lungs), And she has a pretty impressive database of stopping the disease and even tumors whʻlmţm reduction.
Any other types of cancer, the effect of the medicine is still under investigation, it is unclear who is going to help patients and who doesn’t, but one of course not giving up hope.

So where’s the problem? For the price. Between 20 to 60 $ a month.

Our film “life too precious” will be broadcast tomorrow at 22:10 ON CHANNEL 2, following 3 patients who fight about hqytrwdh: Life, Nica and adi. Disposable Heroes who find themselves in a nightmare twice: on the one hand fight terrible diseases and on the other hand the race to raise the money for the drug might save them. People break savings, exciting facebook posts from friends, raising benefit shows and sometimes even a home equity loan with this, for a chance at life, chance to heal.
Towards the end of the movie, sitting in front of us tal morganstern, an economist at the health department who runs first negotiating prices of medication, which tells of cynicism is shocking where she ran into. How pharmaceutical companies sitting people wmţmẖrym medication regardless of the cost of production and development, only by the price of our fear. This reality where cancer patients find themselves all alone – no registers patients, without an insurance company, in most cases, even without the help of the state, the reality that rich will live and everyone else dies, must change. I hope our film will help even a little bit.

The translation by Google is funny but at least we have the gist of it.

I though this was a photo of my last infusion —-WRONG !!

Yesterday as I was sitting in the Den here when at 8.40 the phone went. It was a foreign voice asking if I was Mavis Nye , I replied yes thinking to myself Oh yes a cold a call getting ready to put the phone down. Good job I didn’t it was my Doctor at The Royal Marsden to tell me they have been contacted by Merck and that I was 2 doses of my drug short. This happened when I was very ill with a blood infection which was down to a Bug in the PICC line.

Merck want me to have these even  though my result is great. So I have had to arrange this Friday to go back and have 1 dose and the other in 2 weeks. well I wasn’t expecting that.

So I will be going back to see my lovely medical team at the Marsden but at least I will have my scan result tomorrow.

 

We have many Mesowarriors finding hope with 2 new trails that are coming through for UK and around the world have the chance at them. Good luck to you all I send hugs to all the Mesothelioma Warriors I share the common bound with. my email is mavisnye@yahoo.co.uk. 

I have been bonded to Lou Williams in Australia as I helped when she went on Keytruda and was able to help her doctor with the dosage information.

message on her blog is

To all warriors around the world I send my love, warrior strength and cocooned hugs to you.

My email is eradicateasbestos@gmail.com

 

Lou xx

I love the sisterly love and the way we can help so many Warriors to get through the terrible diagnosis. To always be there for everyone with advice or information as we didn’t have it when we were first diagnosed.Hugs from us both xxx

Lous blog http://asbestosaustralia.blogspot.co.uk/2016/06/winter-has-set-in-and-be-mindful-of.html?spref=fb

A Diary Of A Mesowarrior Living With #Mesothelioma -A Royal Weekend, And Sue Stephen’s Asbestos In Schools Petition.

If there is one thing we do well its a street party and so many were held over the country to celebrate the Queens 90th birthday. http://www.bbc.co.uk/news/uk-36509469

Its been a great weekend with trooping of the colour on Saturday

Everyone talking about the Queens outfit being such a bright colour but it has been explained that security has dictated she wears these colour’s so that she can be seen if they have to act on any terrorist attack .

http://www.popsugar.co.uk/celebrity/Royals-Trooping-Colour-2016-Pictures-41627056#photo-41627045

http://www.bbc.co.uk/news/uk-36505392

I must admit that like so many I love all this.

The Queen has been part of my life as she has always been there. I was a war baby so I to have seen so much and there is always a Royal Occasion taking place.

Now her Palace is in trouble with Asbestos as the old building is crumbling and revealing the dangers that they only use it as -The Office.

Prince Charles will not use it when he is King as he has such a comfortable home at Clarence House and HighGrove.

So that was the weekend I wont talk about Football as the Russians have caused our fans so much trouble but I do have to mention the sad shooting in Orlando.

The killing 50 people and wounding at least 53, police has been a shock to the world. You just never know what will happen when you wake up each day but we musnt let people like this win. We must live our lives and not be afraid.

Our love and thoughts go out to the families and friends of both the dead and the casualties who have to heal again. I dont think their minds will ever heal though. It would be good if it bought about the end to guns the US needs a ban on guns but that doesn’t really stop terrorists as we know so well in this country.

Could I ask everyone of you that reads my Blogs to sign this.

We have a huge problem in our Schools with Asbestos. It has been covered up for years but our publicity is working and we are fighting hard for Asbestos In Schools.

We have lost so many Mesowarriors  our Tess Gully as well as Micheal Lees Lovely wife. Just by working and teaching our children in Schools like Sue Stephens

This should not happen and we just dont know how many children wont reach old age because of Mesothelioma in years to come.

https://you.38degrees.org.uk/petitions/protect-our-children-and-teachers-from-asbestos-exposure-in-schools?bucket&source=twitter-share-button

We want every school in the UK to have to produce an annual report about the type and condition of any asbestos on the premises and share this with all parents and staff. Every child’s potential exposure to asbestos at school must be recorded and shared with parents.
AND
The Government must introduce and implement a policy for the phased removal of all asbestos from schools to be completed by 2028, starting with the most dangerous asbestos.

Why is this important? I will let Sues Daughter tell you x

My Mum, Sue Stephens, was a primary school teacher in Buckinghamshire for almost 30 years. She taught over 800 children and was a wonderful teacher and very committed to her work. Some of her ex-pupils recently wrote to her saying ‘you were the best reception teacher we could ever have wished for and you gave us the best grounding in education that anyone could ever have’.

Tragically my Mum is now dying from mesothelioma, a cancer that comes from exposure to asbestos. It can lie dormant for a long time, meaning that victims are diagnosed with the illness 15 to 60 years after their exposure. Mum believes she was exposed to asbestos in the school she taught in.

Although Mum is now in the last weeks of her life, she is horrified that teachers and pupils continue to be exposed to asbestos in schools. I’ve promised her that I will do my best to make sure no-one else has to suffer like she has.

The problem with asbestos in schools
• 86% of UK schools have asbestos in them, putting over 7 million pupils at risk. A survey in 2015 found that 44% of teachers have not been told if their school contains asbestos. This lack of awareness puts them and their pupils at risk of exposure.
• More than 224 school teachers in England have died of mesothelioma between 2003 and 2012. There is a similar pattern for school support and maintenance staff. Last year 22 teachers died, meaning the UK has the highest death rate in the world. Experts predict that the number of school related deaths in the UK will continue to rise.
• Children are particularly vulnerable to developing mesothelioma. A five year old child that is exposed is five times more likely to contract mesothelioma than someone exposed to asbestos in their 30s. It is reported that between 200 and 300 people die each year as a result of exposure to asbestos when they were children at school.

All of these deaths are completely preventable. We’ve known the dangers since the 1960s with legislation controlling its use since the mid-1980’s. 2 million asbestos fibres can fit on a pin head but mesothelioma can develop from ingesting only one or two fibres. Despite this people continue to be put at risk due to the failure of successive governments to remove asbestos from our schools.

I’ve seen first hand the pain and suffering that mesothelioma causes. I’m already losing my Mum to this terrible disease, I need to be sure that my school age daughter is not in danger simply by going to school.

We can’t let more of our children and teachers die from this entirely preventable disease. Nicky Morgan must prioritise the removal of all asbestos from all our schools.

How it will be delivered

My family will deliver this petition in person to the Minister of Education.

 

A Diary Of A Mesowarrior Living With #Mesothelioma-Is there a Action Mesothelioma Day Near you on July 1st

We Mesothelioma Warriors have been marking the day, 3 years ago yesterday, that we said good night to our Debbie. We helped her, now grown up young son Kierran  to get through the day with smiles as we put on pictures on his wall  of us raising a glass to her. It makes for a very sociable day and helped him through.

From all around the world people joined us on Face Book.and we were united. even some that didn’t have Meso 3 years ago, joined in as that is what we do best. raising each other up patients and carers alike.

So many pictures, but these were the ones I put on and remembered her all day and all the things we did together and on face book. All the secret messages with all the Mesowarriors every evening. i still have them all I can’t delete such precious messages and messages of when someone had up set her and all the pain and suffering she went through in her own fight with Meso and how we helped each other through and other warriors to many to name. We loved them all.

July the 1 st is a special day where we will  have Action Mesothelioma Day where Doves will be released around the Country. Where we will raise money for  research to find that cure for our disease. We will find it as patients 

Action Mesothelioma Day

Friday 1st July 2016 

Every year, on the first Friday in July, people gather around the country to commemorate those who have lost their lives to mesothelioma. Campaigners, victims of asbestos diseases, families and carers will be joined by trade unionists and MPs to raise awareness of mesothelioma and to campaign for better funded research and improvements in treatment.

Details of events organised by Forum groups can be found below.

Action Mesothelioma Day in Portsmouth

Action Mesothelioma Day in Manchester

Action Mesothelioma Day in Derby

Action Mesothelioma Day in Sheffield

Action Mesothelioma Day in Gateshead

Action Mesothelioma Day in Wallasey

Action Mesothelioma Day in Leicester

Action Mesothelioma Day in Barrow

Action Mesothelioma Day in Leeds

Action Mesothelioma Day in Swansea

Action Mesothelioma Day in Birmingham

http://www.asbestosforum.org.uk/

There are more than this around the country so please google Action Meosthelioma for your home town and please go alone and listen to the speeches and join in with day

There are many not on this list

DAST are The Market Place at Derby

Action Mesothelioma Day – Raises awareness about the asbestos related cancer – mesothelioma. Speakers will include Dr Hadfield – a Respiratory Consultant, Colin Smith, who has been diagnosed with mesothelioma and David Lees from Peak House Practice. The event will end with ‘Forget-me-not’ a song telling the story of a joiner diagnosed with mesothelioma and a bubble demonstration and reflection.

AACS Support Group, Wales Manteg Penslade FishGuard Pembrokshire SA65 9PB 0292036550 Have a Meeting and Ray and I were asked to talk but we had already committed to London so  we have recorded our talks for them to show. I hope that works out OK as that’s a first for us.

If you’re in London on that day please drop into the TUC HQ

Address: Congress House, 23-28 Great Russell St, London WC1B 3LS 

Linda Rheinstein will be with me speaking for ADAO  and Prof Peter Szlosarek from

 

A Diary of A Mesowarrior and #Mesothelioma Our Liz Has A Great Interview in The Nurse Standard

Liz Darlison and I go back to 2008 when I met her at the Mesothelioma UK Patient and Carers day at the Novetel Hotel at St Panceas where she asked me to talk about my story of Mesothelioma and we have been friends since then.

When ever she wants me to help with any talk or sorting surveys and quieries of Mesothelioma Warriors I do. We have met at many Conferences with all the nurses who have become great friends as well. Well it has been 7 years now.

My most recent meet up was at IMIG where Mesothelioma UK held the Patient carers Congference

We had a boogie though it wasnt all serious.

She Adores Ray as well and they get on so well.

Ray and I wrote books and we dedicated the money to Mesothelioma UK as it is a charity.

As they say on their web site

We feature all our ‘Fab Fundraisers’ in this section and if you want inspiration this is the place to come. We have runners, we have walkers, we have cyclists, we have skydivers, we have climbers, we have triathlonists, we have raffles, tombolas, coffee mornings, cake sales, Spring, Summer and Winter Ball organisers, the list  is endless but without your support Mesothelioma UK could not continue to do the vital work we do for patients, their families and health care professionals. Don’t let age get in the way our fundraisers start from 3 to 90 years old… So please let us know about your fundraising aspirations and challenges it doesn’t matter how big or small your event, every individual one is so important to us and we will support you with our fantastic fundraising packs, our good cheer and best wishes.

Contact Jill Lemon Fundraising & Marketing Manager on 0800 169 2409 or emailmesothelioma.uk@uhl-tr.nhs.uk

Lets Do Something Good Today And Support Mesothelioma UK!

I have done this as a guest blog as the article is in a The Nurse Standard.

DUAL ROLE IN MESOTHELIOMA CARE Liz Darlison describes the role of specialist nurses in caring for patients a ected by asbestos

Liz Darlison from Mesothelioma UK interviewed for major feature in the latest edition of Nurse Standard

DUAL ROLE IN MESOTHELIOMA CARE Liz Darlison describes the role of specialist nurses in caring for patients a ected by asbestos Heart disease RCN Wales is hosting an afternoon seminar about red fl ags in heart disease on June 16 in Cardiff. The event aims to expand clinical knowledge about patients with poor cardiovascular health. Topics include a review of the pathophysiology of hypertension, angina and heart failure, and the importance of monitoring for early identify cation of deterioration and to ensure timely intervention. See tinyurl.com/zleq3ls or call 02920 680 713. Cancer The annual childhood cancer conference returns for its third year on June 17 in London. The event offers a chance for parents and researchers to fi nd out about the latest research into childhood cancer, and brings together pediatrics oncology researchers, health professionals, charities and the parents of children affected by childhood cancer. Go to tinyurl.com/ofrvqyq Crisis care Mental health crisis care is the subject of a conference on June 22 in London. Chaired by Jim Symington, from the Mental Health Crisis Concordat implementation team, the day will focus on improving mental health crisis care and delivering a new model of mental health crisis services. There will be a national update on delivering the new Mental Health Taskforce recommendations on crisis services, and progress against NHS England’s commitments. University Hospital Bristol NHS Trust senior nurse in liaison psychiatry Selena Williams and NHS England deputy head of mental health Sarah Khan are among the speakers. See tinyurl.com/gtawpdg NOTICE BOARD Mention the word mesothelioma and many nurses will know of someone whose life has been affected by this increasingly common cancer. The disease is associated with inhalation of asbestos and the stories of those affected can be shocking, such as this example of a woman whose husband worked in a shipyard: ‘No one knew of the dangers at the time, but I realise now I must have been exposed to breathing in asbestos fibres from his working clothes, which I used to shake out and wash for him.’ Liz Darlison divides her time between posts as mesothelioma consultant nurse at the University Hospitals of Leicester NHS Trust and director of services for Mesothelioma UK, a charity she set up six years ago. She is well aware of such patients’ experiences. ‘This indiscriminate, industrial cancer, caused by a substance whose use in building work was not banned until 1999, has a particularly high burden of patient symptoms and limited treatment options,’ she says. Acknowledging that any cancer diagnosis is a shock, Ms Darlison believes learning you have mesothelioma is exceptionally difficult. ‘Understandably, some patients and their families feel their exposure to asbestos dust through no fault of their own, many years ago, was unjust. And at this most vulnerable time in their lives, they may also have to struggle to navigate complex legal and benefits systems to secure financial support and compensation.’ Ms Darlison took the first steps to provide extra support for these vulnerable patients when she was working as a lung cancer nurse specialist 14 years ago. Patient helpline She says: ‘I was being inundated with calls from anxious patients, desperate to learn more about their condition, after the UK’s only mesothelioma nurse specialist (MSN), who was based in Leeds, retired.’ So, with the help of donations and an administrator, Ms Darlison ran a patient helpline from her hospital base until the charity’s launch. Today, Mesothelioma UK provides patients with impartial information, advice and professional support from its nurse-run helpline and a Citizens Advice mesothelioma benefi ts and compensation adviser. The charity now funds 13 nurse specialist posts across the UK. Each nurse specialist has a cancer nursing background and receives additional education in mesothelioma care to ensure they can provide what Ms Darlison describes as ‘highly skilled, autonomous patient care and advocacy.’ Lung cancer nurse specialist Vanessa Beattie, who is deputy chair of the National Lung Cancer Forum for Nurses, says the UK’s lung cancer nurses rely on the specialist support MSNs provide. ‘Knowing our MSN colleagues have the time and extra expertise to help us support our mesothelioma patients is reassuring,’ she says. In addition to acting as keyworkers, MSNs: Co-ordinate inpatients’ and outpatients’ continuity of care. Run regional support groups. Educate health professionals. Promote clinical trial availability. Cover Mesothelioma UK’s fi ve-day patient helpline rota. Share clinical practice and research information via online social networks. Participate in the mesothelioma nurse action team’s nationwide meetings and training days. As an associate and senior nurse lecturer at the Royal Marsden School and de Montfort University in Leicester, Ms Darlison educates, trains and raises public awareness of mesothelioma prevention and patient care wherever she can. But with UK mesothelioma CAREERS incidence estimated to rise for some years yet – despite asbestos regulation – Ms Darlison says she has plenty more to do. ‘My vision is for Mesothelioma UK to fund more treatment research, to establish at least 28 NHS integrated MSN posts in the UK and to have a global impact. ‘The UK has the highest incidence of this cancer in the world, but the international picture is poor. Only 50 countries have asbestos bans, with 150 still mining, exporting or using it. ‘As a British nurse, I cannot turn a blind eye to young people’s lives being put at risk in this way.’ Teamwork, donors’ generosity and support from colleagues at Leicester University Hospitals trust, which continues to host Mesothelioma UK, have been the key to the charity’s progress, says Ms Darlison. ‘We have had our low moments. I remember putting the phone down and weeping at my desk because I didn’t think we could get funding. But it all came right through teamwork. ‘We are all Leicester City football supporters here and believe if they can overcome their difficulties, so can we.’ Ms Darlison says the two days each week she spends running an outpatient clinic and liaising closely with physicians on patient follow-up are invaluable. ‘Our charity was established to meet patients’ needs, so it would be impossible for me to stand up and speak on this without maintaining patient contact. My nursing role ensures I continue to learn and remain sensitive to mesothelioma patients’ continuing burden of need’ NS By Catharine Sadler, freelance journalist

Source http://journals.rcni.com/doi/pdfplus/10.7748/ns.30.40.64.s48

A Diary Of A Mesowarrior Living With #Mesothelioma, National Cancer Survivors Day 2016

We had a lovely meal out in Canterbury yesterday with friends to celebrate their coming home from a Motor Home 5 week holiday in Italy

Lake Garda Looks divine And there are lovely camp sites there. They had lots of stories of their travels into Croatia.

We had to say goodbye and they have travelled home this morning so at least they have had a sunny journey.

The sun has finally come out to play as we now say goodbye to the bluebells. They have really been a lovely picture as we go into the countryside with the dog.

Today we went to the field to let Louis have a run as there was so many weekend walkers about.

Such a great walk.

Back to a Salmon dinner and settle down to reflect on the day.

Today is the National Cancer Survivors Day 2016

We must always have hope so as today is a Celebration of that hope lets back Cancer Research and Mesothelioma UK and all the Cancer Charities and that cure will happen xx

There have been many stories of Survival on Face book and I realised today I can join this club. A Survivor–.dare I whisper that.– I do hope I’m after all this fight.I feel like a butterfly emerging from the chrysalis, I have been wrapped up for 7 years, 7 long years I have let slip by as I fought Mesothelioma. But I must gain confidence and come right out and dry my wings.

Rod Smith Of Bernie Banton has worked on 2 charts that shows we do need more interest in Mesothelioma Trials

Australia
@BernieBantonFdn has compiled charts comparing ‪#‎mesothelioma‬ trials to other ‪#‎cancer‬ trials

I have researched and compiled a large amount of clinical trial data that shows rare cancers such as mesothelioma really are the poor cousins when it comes to trials and research.

I have done this to get the point across to the people responsible for health, research and the Prescribed Benefits System in Australia, and to give qualification to the Bernie Banton Foundation petition aimed at getting the Australian Government to fund rare disease trials, and modify the Prescribed Benefits System application process, to make it possible for pharmaceutical companies to get drugs with potential to treat rare and less common onto the PBS more quickly.

Please study these charts, the inequity of the system is quite stark – we must advocate for change!

Click on each chart to bring it up as photo so you can read it. – Rod Smith

The petition can be accessed here: http://chn.ge/1VldNPN
Please sign and share

On Sunday, June 5, 2016, cancer survivors and supporters in communities around the world will gather to celebrate the 29^th annual National Cancer Survivors Day® and raise awareness of the issues of cancer survivorship.

There are nearly 14.5 million people living with and beyond cancer in the U.S. today, and more than 32 million cancer survivors worldwide. On Sunday, June 5, 2016, communities around the world will gather to recognize these cancer survivors as part of the 29th annual National Cancer Survivors Day®.

National Cancer Survivors Day® is an annual worldwide Celebration of Life that is held on the first Sunday in June. It is the one day each year that people around the world come together to recognize the cancer survivors in their community, to raise awareness of the challenges these survivors face, and, most importantly, to celebrate life.

According to the National Cancer Survivors Day Foundation, administrator for the celebration, “A ‘survivor’ is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life.”

“When most people hear the word ‘cancer,’ they automatically think the worst,” says Foundation spokesperson, Laura Shipp. “But the truth is that more people are living longer and better quality lives after cancer than ever before. National Cancer Survivors Day® is an opportunity for these cancer survivors – and those who support them – to come together and celebrate this new reality in cancer survivorship.

“But this is also a day where we want to bring attention to the hardships cancer survivors still face. These include not just physical side effects but also psychological, social, and emotional distress, as well as significant financial hardships. Our Foundation hopes that NCSD serves as a call to action for further research, more resources, and increased public awareness to improve quality of life for cancer survivors.”

Everyone knows someone who’s life has been touched by cancer. The National Cancer Survivors Day Foundation is encouraging all citizens to participate in their community’s event. To locate the one nearest you, check with your local cancer treatment center, hospital, or American Cancer Society office. Or you can host an event of your own using the resources available through the National Cancer Survivors Day® website, ncsd.org.

The nonprofit National Cancer Survivors Day Foundation provides free guidance, education, and networking resources and assistance to hundreds of hospitals, support groups, and other cancer-related organizations that host official National Cancer Survivors Day® events in their communities. The Foundation’s primary mission is to bring awareness to the issues of cancer survivorship in order to better the quality of life for cancer survivors.

As the number of cancer survivors continues to grow, it is becoming ever more important to address the unique needs of these survivors. Many face limited access to healthcare specialists, a lack of information about promising new treatments, inadequate or no insurance, difficulty finding employment, and psychosocial struggles. Once active treatment ends, cancer survivors still must cope with the long-term effects of cancer, which can include ongoing physical side effects as well as potentially devastating financial setbacks.

The National Cancer Survivors Day® Foundation, along with NCSD 2016 national sponsors and Amgen, Astellas, Bristol-Myers Squibb, and Coping with Cancer magazine, is encouraging a greater commitment to lessening the burden of cancer survivorship.

“Cancer survivors are now living much longer after diagnosis thanks to advances in modern medicine. And the strides researchers are making in cancer treatment are amazing to see,” says Shipp. “However, we need to do a better job of addressing the hardships cancer survivors face beyond treatment.”

Leading up to National Cancer Survivors Day®, the NCSD Foundation urges everyone to spread the message that there is life after cancer – and that’s something to celebrate – but we can still do more to lessen the burdens of cancer survivorship. The following are suggested posts for your social media sites:

On Facebook: There is life after cancer – it is beautiful, it is meaningful, and it is something to celebrate – but we can still do more to lessen the burden of cancer survivorship. Join us as we #CelebrateLife and raise awareness on National Cancer Survivors Day, June 5. #NCSD2016

On Twitter: We can do more to lessen the burden of cancer. #CelebrateLife, raise awareness on National Cancer Survivors Day, June 5. #NCSD2016

On Instagram: There is life after cancer – it is beautiful, it is meaningful, and it is something to celebrate – but we can still do more to lessen the burden of cancer survivorship. Join us as we #CelebrateLife and raise awareness on National Cancer Survivors Day, June 5. #NCSD2016

National Cancer Survivors Day® 2016 is sponsored nationally by Amgen, Astellas, Bristol-Myers Squibb, and Coping with Cancer magazine, with support from Genentech, Raquel Welch^® Signature Wig Collection, and Teva Oncology.

About the Foundation

The nonprofit National Cancer Survivors Day Foundation (ncsd.org) provides free guidance, education, and support to hundreds of hospitals, support groups, and other cancer-related organizations that host National Cancer Survivors Day® events in their communities. The Foundation’s primary mission is to bring awareness to the issues of cancer survivorship in order to better the quality of life for cancer survivors.

About National Cancer Survivors Day®

National Cancer Survivors Day® is an annual, treasured Celebration of Life that is held in hundreds of communities nationwide, and around the world, on the first Sunday in June. It is a CELEBRATION for those who have survived, an INSPIRATION for those recently diagnosed, a gathering of SUPPORT for families, and an OUTREACH to the community. On National Cancer Survivors Day®, thousands gather across the globe to honor cancer survivors and to show the world that life after a cancer diagnosis can be fruitful, rewarding, and even inspiring.

It is a day for everyone, whether you’re a cancer survivor, a family member, friend, or medical professional. This day provides an opportunity for all people living with a history of cancer – including America’s 14.5 million cancer survivors – to connect with each other, celebrate milestones, and recognize those who have supported them along the way. It is also a day to draw attention to the ongoing challenges of cancer survivorship in order to promote more resources, research, and survivor-friendly legislation to improve cancer survivors’ quality of life.

http://www.ncsd.org/news-1/for-immediate-release-NCSD-2016-communities-to-celebrate-June-5

 

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