Posted by: rayandmave | September 22, 2014

Living With Mesothelioma -My Diary- My 8th MK3475 infusion

I didn’t sleep at all last night. The fear of overlaying stopped me. What a waste of a lovely cosy bed.

Finally I could get up 4.30 am and got ready for the journey to the Royal Marsden. It was still dark as Ray walked Louis and then we started our drive But Dawn happened and we had a blazing sun pop up to say hello.

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The M20 was great, if a little busy as the sun rose up from its sleep but the M26 got busier and as we travelled on the M25 we had our usual half an hour of hold ups. Then the local traffic to sutton was horrendous. We arrived though at 8am and I booked in. I sat in the waiting room where there was another lady. I didn’t hear my name called just I knew that lady got up and she went in. I sat there and an hour had gone by. The nurses rushed in and said that the lady had gone in under my name and was even answering to Mavis as they put her in a bed. How weird.

We really laughed and joked  and the lady though didn’t talk to me from there on. So where I was going to be bed 4 they had to change all the paperwork to bed 3.

My PICC line preformed so well as bloods were soon taken and off to the Lab.

I was weighed and and then I waited for the Doctor to see me.

The Doc soon turned up and he was one of the trial Specialists. He said did I know how good my Scans were. I told him I did. He said that my shrinkage was excellent. I had already been told that there are two of us with a great volume of shrinkage. A young girl and myself. So now they have to start investigating why.

I asked the Doctor, were they pleased, Yes, he replied  but its not the volume of shrinkage thats important but the long term sustainable shrinkage that maters. He is pleased with my health and the condition of my body that I can go on. Only stopping if I get ill or I deteriorate in anyway.

I asked if its OK to start talking about it and he said. By all means so long as I did not generalise and only talk of my own experience as Mesothelioma patients are all different and their disease is made up of so many different Physiology. I said I wanted everyone on the trial and he said that is impossible as there are so many criterias to this trial but that they are going to keep going down the path of Immunotherapy as it seems to be giving the best results.

More trials are being worked on over the next 2 years but they have so much investigation to do, as they now need to know why it has worked on me. I already give extra blood each visit for them to look at my DNA etc etc to see why I got Mesothelioma but now they are working on Why Im responding so well. This really pleases me as I always wanted for them to look at my DNA and I would love them to look at Rays to see why he doesn’t have a Cancer gene and why he doesn’t have Mesothelioma.

Talking to Ray he would really like to volunteer so we will ask.

After 2 hours the result came in that my bloods were good and that they are making my drug up. I wanted to go and visit a Mesowarrior who has just been diagnosed and had come for a scan result on Thursday and had been kept in as the scan had shown it was in his stomach as well. All this in 3 months after living a normal life. I know how that shocks everyone, we are so healthy and then bang we cant breath and we are never the same again..

I took a bleeper and off Ray and I went from the East Wing to the West Wing. I found the ward and asked for our Warrior. They allowed me in to see him. Bless him he has an Infection and is on Oxygen.

Ray and I had a chat too his lovely son and we have swapped details and will keep in touch. I couldn’t stay long as I had to get back in my ward for my lunch.

I got back and Lunch was served. cauliflower cheese . A Doctor walked by and stopped and said “That smells divine” you dont hear that very often about hospital food never mind from a Doc.

2pm my drug arrived and I was all set up on the infusion machine. Half an hour and that was finished and I had a flush for 10 mins.

The nurse then gave me all we need to flush my PICC line at home now that Ray is trained to clean and flush it.

So I was set to go home. Everyone shouts out bye. They are such a lovely bunch of people.

The journey home was very good traffic was easy until we got to the A249 and they are going to be doing road works for a few weeks. The jam was horrendous I do hope they sort that out.

A249 road works for NINE WEEKS for new water pipes. So be warned all my friends that us this cut from the M20 to the M2.to get to the coast or Dover fro the Ferries or Tunnel.

Rays Blog

http://mesoandme.wordpress.com/2014/09/22/monday-100/

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We have had a brilliant time since Thursday where I have really chilled right out.

We arrived at Brogdale and there were just a few Motorhomes but they kept coming in and coming in until there were 44 filling up the whole of the Rally field.

That is so good for C&CC Motorhome section in Kent. As it wasnt a special rally just a normal weekend rally. Its amazing what is popular.

Ray and I walked around the shops that are there and bought some meat for dinner on Thursday.

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We did some really lovely Orchard walks through the weekend and the plums were just finishing. Plenty of apples though but we were so good and dint go scrumping.

 

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Through the summer you can ride a little train through all the Orchards but sadly it was to late for us to do this as its the end of September.

Friday saw us having a lovely Meal in the restaurant but it was far to big and we were far to full to eat a sweet.

They are going to do a cream tea on Macmillan’s Cake Day and put all the money into Macmillan’s fund next Thursday and I said I will go and join in the fun.

Saturday we went back and had our Apple Crumble much to the amusement of the waitress.

We bought our beer to put on the table for the evening. The lady in the shop said that we will be able to sample so many as all the campers were buying different ones.

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There was a lot to choose from.We walked that off Louis was so pleased to have so many walks that he is now laying at my feet worn out.

Then the evening fun started  as we all sat together

 

 

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Viv waiting for the stock of beers so she can play bar maid at the Wagoners Return.

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Pub games were played which was fun.

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We were sitting chatting away and sampling the beer.

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It started to drizzle but that doesn’t stop our cooks as they were sausage BBQing.

So you can see what a mad lot we are but we do enjoy ourselves ans it was a job well done as they fed 88 people.

As long as you have a good solar panel these rallies are a great way to camp.

Sunday we woke up to more sun and so we were able to do one last walk with Louis.after Coffee morning we went to the butchers to buy meat to take home with us.This is my local butcher as we do visit here. We were only 5 miles from home.

The Butcher of Bogdale

Its good to have a real butcher away from a supermarket as the meat is of a higher standard.

So that was it we have come home and have to get back to traveling tomorrow to the Marsden.

Life has to go on in a more serious vein, but I have had a lovely rest and although very tired Im now ready to go on in battle.

I must admit I do think sometimes that if the Docs had been right and I had passed in three months I would have missed such a lovely life as we have really got our retirement just right.

I came home to another Mesowarrior passing after only 5 months of diagnosis  I do really feel each passing as I just want it to stop. so many candles are being lit. Too Many

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Goodnight to a very brave  Mesowarriors RIP

 

Rays Blog http://mesoandme.wordpress.com/2014/09/17/wednesday-101/

I have got to say Good Luck to Scotland as what ever the result Scotland will never be the same again. This has torn you in halves with either Yes or No . Hope Friday is a day when you can rebuild again the Scotland we Britains Love xxx

My Blog

Yesterday was a weird day with this heavy cloud we have. They promised sunshine in the afternoon but it never came as they now say that when the low cloud lifted higher cloud came and shrouded us. It makes you feel like you have a thick head, so very weird. I know Ray felt the same and I kept saying are you Ok.

There is a lot to do this week with all the garden so tidy now we have had a great rest. Just the normal housework and washing clothes.

We are off to Brogdale (Based in the heart of Kent, Brogdale is a living gene bank of over 4,000 varieties of apples, pears, plums, cherries, cobnuts, currants and quinces and the Biggest & Best collection of fruit trees in the world!)

We will be in the Motor Home as its just around the corner in faversham. Im looking forward to some country walking to see how I fair but I will take a walking stick just in case I get tired as thats when I start tripping.

Will take photos of coarse. It will soon be turning colder as winter approaches so making the most of this unusual warm weather. They said on TV that we cant call it an Indian Summer until the 21st and that it is wrong to think and Indian Summer is to do with India, its not its to do with the USA and the Indians there. You live and learn.

Sure enough Wikki knows —-

The US National Weather Service defines this as weather conditions that are sunny and clear with temperatures above 21 °C (70 °F), following a sharp frost (the “Squaw Winter”). It is normally associated with late-September to mid-November.

In the desert southwestern United States, where frost is rare, the term is sometimes used to refer to a brief period of hot dry weather which occurs after the hottest months and before the onset of winter cool and/or rain, typically in October or November. It may also be used to refer to any unseasonably warm weather during the first few weeks of the rainy season, before the approach of spring. In the Pacific Northwest, it refers to warm, dry weather after the first late-summer rains. In some regions of the southwestern United States, “Indian summer” is used colloquially to describe very different weather phenomena, including the hottest times of the year, typically in late July or August.

A late-19th century Boston lexicographer named Albert Matthews made an exhaustive search of early American literature in an attempt to discover who coined the expression. The first reference he found dated from 1778, but from the context it was clearly already in widespread use.

A famous use of the phrase in American literature is the title of Van Wyck Brooks New England: Indian Summer (1940), chosen to suggest inconsistency, infertility, and depleted capabilities, a period of seemingly robust strength that is only an imitation of an earlier season of actual strength. http://en.wikipedia.org/wiki/Indian_summer

My blog yesterday has bought mixed reactions as I highlighted the video and the history of Asbestos.

You can read in the comments boxes at the side but I highlight something I dont understand —– Mave this is a great bit of work thank you. Did you know that here in Canada we produced over 40% of this stuff some not far from where I live here in Newfoundland many more will die before anyone does anything. What will it take? I Know they will keep hiding this because there is money to be made and killing people does not matter to big or small business we cause to much trouble they just close down and reopen under a different name WHEN IS IT GOING TO STOP i WILL DO ALL i CAN FOR THIS CAUSE.

I thought Canada was understanding as they had to close the Mine down and the Prime Minister didnt get the loan to reopen. I did know they had a stock pile and were sending that to India.

I will have to have a snoop around and investigate.

Also Derrick wrote a comment — An excellent video Mavis I worked around the spray on insulation I did not know they were using it in the 1800’s I thought it was discovered in 1925 god the evilness of the coverup never fails to bring tears to my eyes. “Mans quest for riches robs him of his humanity”

Im so grateful for fed back as it spurs me on in my fight for Asbestos Awareness.

I have also been asked to talk to some nurses at the Mesothelioma UK Conference on the friday night as they havent met someone on 5th line treatment. Of coarse I said yes as it something close to my heart to shoe the NHS we do live with Mesothelioma so stop calling it arer and get on and fund more Innovative research PLEASE!!!

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I have had this message over night Dear Mavis. Please would you share my sorrow, my beloved husband Mike Hopkin lost his battle with Meso on Monday, he was such the life and sole of the party and only saw the good in everybody,and if they were bad it was because life had delt them a hard hand.It’s true the good die young. Many thanks Shirley ————so I light a Mesowarrior candle for Mike our brave Mesowarrior

http://mesoandme.wordpress.com/2014/09/16/tuesday-111/ Rays Blog

My Blog

Yesterday was a quiet day. Worked in the Den all morning on my support group that is building up. Private messages of people that are just being diagnosed. I remember how lost I was at the beginning and that feeling of the world caving in.

I finally turned the computer off at Lunch time and Ray took us to Faversham where we walked around the football pitch. The sun was blazing down and there were people sitting on the grass  with dogs or just sitting talking.

One bench was filled with very young girls all having a giggle and chatting. One thing different was that each had a push chair and a baby in them. This has become a normal sight in the UK. Teenage Mums. Not married and fathers not around. It is so sad to see really.

Britain still has the highest rate of teenage pregnancy in Western Europe despite being one of the world’s biggest users of contraceptives.

The figures, which emerged yesterday in a large- scale international study, appeared to explode claims by the sex education lobby that the UK’s sky-high teenage birth rate is down to ignorance.

It showed that four out of five females between the ages of 15 and 44 in Britain – 80 per cent -use some form of contraception.

This compares to 76 per cent in the U.S., 75 per cent in France and 59 per cent in Japan.

Britain, nevertheless, has a sky-high level of teenage pregnancies, with 2.9 out of every 100 girls aged between 15 and 19 giving birth every year.

Read more: http://www.dailymail.co.uk/news/article-28860/UK-tops-league-teenage-pregnancy.html#ixzz3DYbkQQSu
Follow us: @MailOnline on Twitter | DailyMail on Facebook

A report like this is sad. I know i married young and I never regretted being a Mum but how I would have coped on my own I really dont know.

Anyway we had a lovely sunny walk and came home to a little nap.

On Face Book Doctor Mercola said Changing your diet will be far better for your health than taking fistfuls of supplements or worse, falling victim to prescription drugs. I have to agree with that statement. It is good for the immune system to eat fesh vegetables and fruit. Im living by that idea.

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We found the best Video we have seen of the history of Asbestos.

http://onestopmesothelioma.co.uk/videos-page-2.html

Please watch as there is enough evidence that they did know all the dangers and yet still carried on letting people work with no protection.

Published on Sep 16, 2013

100 years ago asbestos became known as a magic mineral and the use of millions of tons of asbestos created a very profitable industry. And for almost as long, the industry has known that asbestos is extremely dangerous to people.
The documentary is part of the international awarded series “Late Lessons from Early Warnings” which explores how we have been able to respond to warnings about the hazards posed by some of the greatest technological innovations of the last century.
We have not always been that successful.
Directed and produced by Jakob Gottshau, Express TV Production
Photography: Michael Daugaard
Film Editing: Jesper Osmund
Music: Niels Mosumgaard
Narration: Brian Patterson
Year of Production: 2006

It has been very well made and people should keep this as its all that is needed in a court when the Postmortems are discussed and when Mesowarriors have to put a claim in.

THEY KNEW IT WOULD KILL.

I think the USA is criminal not to ban Asbestos and they should listen to people like Linda Reinstein and all the volunteers who works so hard to get it banned.

Greed can be the only answer as they watch people die. From their mistakes.

http://www2.epa.gov/asbestos/us-federal-bans-asbestos

Banned products and uses

Under the Toxic Substances Control Act (TSCA): Banned Manufacture, Importation, Processing and Distribution in Commerce of Certain Asbestos-containing Products

  • Corrugated paper
  • Rollboard
  • Commercial paper
  • Specialty paper
  • Flooring felt

In addition, the regulation continues to ban the use of asbestos in products that have not historically contained asbestos, otherwise referred to as “new uses” of asbestos.

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Under the Clean Air Act (CAA): Banned Asbestos-containing Uses

  • Asbestos pipe insulation and asbestos block insulation on facility components, such as boilers and hot water tanks, if the materials are either pre-formed (molded) and friable or wet-applied and friable after drying.
  • Spray-applied surfacing asbestos-containing materials
    Spray-on application of materials containing more than 1% asbestos to buildings, structures, pipes, and conduits unless certain conditions specified under 40 CFR 61, Subpart M are met.

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Under the Consumer Product Safety Act (Consumer Product Safety Commission): Banned Products

  • Asbestos in artificial fireplace embers and wall patching compounds

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Examples of asbestos-containing products not banned

The manufacture, importation, processing and distribution in commerce of these products, as well as some others not listed, are not banned.

  • Cement corrugated sheet
  • Cement flat sheet
  • Clothing
  • Pipeline wrap
  • Roofing felt
  • Vinyl floor tile
  • Cement shingle
  • Millboard
  • Cement pipe
  • Automatic transmission components
  • Clutch facings
  • Friction materials
  • Disk brake pads
  • Drum brake linings
  • Brake blocks
  • Gaskets
  • Non-roofing coatings
  • Roof coatings

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Regulatory history of asbestos bans

  • In 1973, EPA banned spray-applied surfacing asbestos-containing material for fireproofing/insulating purposes. See National Emission Standards for Hazardous Air Pollutants (NESHAP) at 40 CFR Part 61, Subpart M
  • In 1975, EPA banned installation of asbestos pipe insulation and asbestos block insulation on facility components, such as boilers and hot water tanks, if the materials are either pre-formed (molded) and friable or wet-applied and friable after drying. See National Emission Standards for Hazardous Air Pollutants (NESHAP) at 40 CFR Part 61, Subpart M
  • In 1978, EPA banned spray-applied surfacing materials for purposes not already banned. See National Emission Standards for Hazardous Air Pollutants (NESHAP) at 40 CFR Part 61, Subpart M
  • In 1977, the Consumer Product Safety Commission (CPSC) banned the use of asbestos in artificial fireplace embers and wall patching compounds. (See 16 CFR Part 1305 and 16 CFR 1304)
  • In 1989, the EPA issued a final rule under Section 6 of Toxic Substances Control Act (TSCA) banning most asbestos-containing products.
  • However, in 1991, this rule was vacated and remanded by the Fifth Circuit Court of Appeals. As a result, most of the original ban on the manufacture, importation, processing, or distribution in commerce for the majority of the asbestos-containing products originally covered in the 1989 final rule was overturned.  ????????? CRAZY!!!!!!!!!!!
    See 40 CFR 763 Subpart I.

Manchester Asbestos Victims Support Group always support the day well

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

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Action Mesothelioma Charter

We, the undersigned, believe that:

Mesothelioma patients and their families have a right to:

  • a speedy and accurate diagnosis, supported by a Multi Disciplinary Team discussion;
  • good quality information from a variety of sources available in different media and languages;
  • support of a suitably qualified nurse and other Multi Disciplinary Team members throughout their illness;
  • be considered for the best possible treatments available with the support and input of a Multi Disciplinary Team;
  • have up-to-date advice on benefits and help in applying for them, and receive prompt payment of benefits;
  • have legal advice and guidance from a firm of solicitors experienced in mesothelioma claims;
  • guidance on end of life decisions and care at home;
  • provision of a consistent nationwide service from coroners using a clear and open process with a maximum case length of three months.And call upon the Government to:
  • have mesothelioma made a national priority by the Cancer Tsar;
  • fund good quality research, alongside other national bodies, on mesothelioma with a view to improving diagnosis, treatment and outcomes for patients;
  • support the production of clinical Guidelines on the best practice of diagnosis and management of mesothelioma;
  • ensure the Health and Safety Executive vigorously enforce existing regulations on asbestos.And call upon all employers to:
  • prevent future exposure to asbestos by providing a safe working environment with all necessary equipment to protect employees;
  • work with unions and individuals to ensure enforcement of current regulations to safeguard all employees;
  • identify all asbestos in their properties and organise its safe removal where practical or necessary when work is being carried out.

Mesothelioma is a malignant lung disease which results mainly from exposure to asbestos. Someone dies every five hours from mesothelioma in the UK.

Good luck to all those that are raising Awareness

Yesterday was a sad day when my thoughts were with A Mesowarrior as she gained her wings.

But today I must bounce back and get back to fighting for the future. For the cure.

It doesn’t discriminate even famous people are falling with mesothelioma as we heard of the death of  Joe Sample, a fine piano player and talented songwriter who was a founding member of the Jazz Crusaders, has died from complications due to lung cancer at the age of 75.
Among the hits he co-wrote with Will Jennings were the songs Street Life and One Day I’ll Fly Away (for Randy Crawford) and Soul Shadows (for Bill Withers).

It makes me so angry as we have been losing a Mesowarrior each day this week. So much pain and heart break.

On Face Book Asbestos Hunter says — Asbestos still remains in many materials which could be right under our very noses. Have an inspection performed by an asbestos professional; awareness leads to prevention.

Great advice but we need more we need a duty to care for our Homes.I have been concentrating more on the cure and treatment for Mesothelioma. I feel we should get also back the fight to make our homes safe and and to back the training companies like IATP— IATP is supporting the HSE’s Asbestos: Hidden Killer campaign, which is seeking to raise awareness of the dangers of asbestos among tradesmen and women. Currently, each week, roughly 20 tradesmen die because of exposure to asbestos; to see how asbestos can affect you,

http://www.iatp.org.uk/about-us/

The GMB wrote last year —-GMB has major concerns with the manner in which asbestos is managed in schools as it is obvious that that it is often unclear who the duty holder with legal responsibilities is. As more schools leave the control of local authorities to become academies or free schools there is a very real danger that the little knowledge over asbestos within school buildings will be lost.

We need to protect our Children from Asbestos. http://www.asbestosexposureschools.co.uk/

http://onestopmesothelioma.co.uk/

Mavis

Nancy Meredith  is a blog and web content writer with more than 20 years of professional experience in the Information Technology industry. She has been writing about Mesothelioma for 4 years has written a lovely piece about me and my trial.

FDA Approves Breakthrough Cancer Drug for Melanoma; Mavis Nye Participates in Mesothelioma Trial for Same Drug in UK

Merck just broke away from the rest of the pack in the race to bring a breakthrough cancer treatment to patients in the United States, and is poised to do the same in Europe. The U.S. Food and Drug Administration announced last week that it has granted accelerated approval to Merck’s Keytruda (pembrolizumab) for treatment of patients with advanced or unresectable melanoma. Finally, mesothelioma patients, and patients of countless other cancers, may also have access to what’s being touted as the “new breed of cancer treatment.”

The FDA reports that Keytruda is the first approved drug that blocks a cellular pathway known as PD-1, which restricts the body’s immune system from attacking melanoma cells. In effect, the drug turns cancer patients’ immune systems back on. The approval was granted, according to the FDA, when Merck presented “evidence that the drug may offer a substantial improvement over available therapies.” In the results of a clinical trial, nearly 24 percent of the patients had their tumors shrink, lasting up to 8.5 months, and for some, the shrinkage continued beyond this period.

“KEYTRUDA embodies Merck’s unwavering commitment to pursue breakthrough science to help people who are facing the most challenging diseases,” said Kenneth C. Frazier, chairman and chief executive officer at Merck, in the press release announcing the drug’s approval.

PD-L1, or programmed death-ligand 1, is a protein that has been shown to play a role in suppressing the immune system during cancer and other diseases. According to Merck, Keytruda blocks the interaction between PD-1 and its ligands, PD-L1 and PD-L2.

“Our new ability to target the PD-1 pathway with KEYTRUDA is a very exciting step in the immunotherapy field,” said Dr. Omid Hamid, Director of the Melanoma Center at The Angeles Clinic and Research Institute, and a principal investigator for the drug’s clinical program.

Mavis Nye of England Chronicles Her “Brilliant Results” as She Helps Lead the Way for Mesothelioma Research

Keytruda, formerly known as MK-3475, is currently undergoing clinical trials throughout the world for a variety of cancers, including mesothelioma, breast, colorectal and kidney. A search of ClinicalTrials.gov yields a list of 26 clinical trials throughout the U.S., the UK and in Australia, Austria, and Belgium, as well as other countries.

Mavis Nye, of Seasalter, England, a five-year mesothelioma survivor, is a patient in the clinical trial of MK-3475 at The Royal Marsden in the UK. In May, we reported Mavis’ acceptance into the trial. Since then, she has been meticulously chronicling her experience with the trial in her blog, Living with Mesothelioma.Mavis head shot

After over three months of treatment and constant monitoring by the medical team at Marsden, Mavis told MesotheliomaHelp that she has “no sickness, and I feel so well.”

When Mavis was accepted into this trial, she said she “signed her body over to them,” and she has absolutely no regrets. She feels like a different person than the one who walked through the door months ago. She states in her blog, that then, “I was a mess, I know.”

“I’m feeling very well as my immune system has been turned back on by the drug,” Mavis said in an email. “I have more energy, and because my appetite has returned, I cook more. I heal very quickly, I walk unaided now – no stick or walking aid.” [Previously, Mavis was using a walking stick to keep her steady, due to the damage to her nervous system, known as peripheral neuropathy, from chemotherapy.]

Mavis initially experienced a few side effects, including lack of energy, a runny nose and cough. As Mavis reported on her blog after three weeks on the medicine, “When you think how bad chemo was, this is a party.” MK-3475 is not a chemotherapy drug, and now, Mavis reports that she has no side effects.

Mavis Nye, Mesothelioma Clinical Trial Patient
Expert Insight

“The results have been brilliant.”

The best news of all, is that after years of fighting to keep her mesothelioma growth at bay, Mavis reports the drug is shrinking her tumors. In fact, in the latest scan, the doctors could tell just by looking at the tumor on x-ray, without even having to measure, that it is continuing to shrink. Prior to entry into the trial, Mavis reports via her blog that her tumors were growing two mm every three months, “just getting bigger and bigger.”

“A scan showed shrinkage in all areas after eight weeks of four drug sessions,” Mavis said. “After six drug sessions, a scan this week has shown more shrinkage without it even being measured.”

The mesothelioma trial is now closed to patients. Mavis, always the advocate, said in her June 30 blog, “So disappointed that other Warriors won’t get the chance [to participate in the trial]. I wish they would up the spaces from 375 around the world.

Now, she is focused on getting the drug to patients in the UK. “I hope this is fast-tracked in the UK. Only 3 places for Mesothelioma [trial] is not enough, and so they should now trial it for more Mesowarriors. I think that should be sped up.”

“This will give me more living, no one knows how long for as I’m leading the way now,” says Mavis in her Sept. 11 article in her blog. “Writing my own rule book here.”

Note: Bristol-Myers Squibb and partner Ono Pharmaceutical have filed a lawsuit against Merck claiming patent infringement of Keytruda. According to PMLive, the new drug violates a patent assigned to Ono and licensed by Bristol-Myers Squibb entitled ‘Immunopotentiative composition.’ Merck claims the suit is without merit.

Read more: http://mesotheliomahelp.net/blog/2014/09/fda-approves-breakthrough-cancer-drug-melanoma-mavis-nye-participates-mesothelioma-trial-drug-uk#ixzz3DSTnWGdy

Rays Blog http://mesoandme.wordpress.com/2014/09/15/monday-99/

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We say goodbye today to another Mesowarrior Paula Stanley. I haven’t known her for very long as she has had a very fast growing Mesothelioma. She is the daughter of Annie and Pete Roles, our camping friends and I couldnt believe it when I first heard Paula was suffering with the same disease as myself.We have messaged and I brought her into the Mesowarrior Groups where she found help. I was pleased when she also began to help others, It is so good to share your thoughts  when you know you are terminal.

I wanted to go to her funeral but after saying goodbye to Tess on Friday I knew it’s to soon for me. Standing there knowing I have the same disease, its so frightening and I just go to bits.

I have sent flowers from the Mesowarriors and Messaged Annie and I hope she understands.

I have thrown myself into working in the garden until I hurt. I just dont want to think. I keep remembering the photo of me and three other warriors and now its just me left. That is so unnerving. It hit my positiveness.

I will regain it I promise but this week we have lost a warrior everyday. The pain must stop as people should not be killed by an Industrial Disease, Asbestos was used so freely and it should never have been allowed. It was known it would kill so it should have been stopped. Greed should not have been allowed. We are surrounded by the material and there is a duty to manage buildings but not in homes.

So with all the Garden done I can now enjoy this week as they say its going to be an Indian Summer. The sun is rising up and its a new day.

 

This week is a very historical week. Thursday is the Scottish Referendum and maybe we will wake up friday morning with  a broken UK. I do hope the right decision is made, but it is very interesting  times.

The Queen made the comments to memebers of the public waiting outside Crathie Church

It would appear even our Queen is worried.

The Queen has made a dramatic and highly unusual intervention in the referendum debate to urge voters to think “very carefully” before they vote on Thursday.

The comment, to members of the public waiting outside Crathie Church, appeared to be a deliberate move on her part.

She normally walks in and out of the small church from her car, while on holiday at nearby Balmoral Castle, without talking to bystanders.

But before she left the kirk on Sunday, a police sergeant invited members of the press waiting 200 yards away to come up to the church to see the royal party depart.

http://www.telegraph.co.uk/news/uknews/scottish-independence/11095406/Queen-tells-Scots-to-think-very-carefully-about-independence-vote.html

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Rays Blog http://mesoandme.wordpress.com/

 

candle and roses

 

 

 

 

 

Yesterday was the day of Tess’s funeral.I describe the day so that other Mesowarriors can share and know they stood by the side of me as together we said Goodbye.

Tess and I have been friends since 2010 when she found us on Facebook and became a Mesowarrior when diagnosed with Mesothelioma.

We found we lived so near as she was in East Kent and came under Kent an Canterbury hospital as I did. We had the same Oncologist Dr Cominos.

So we were always in touch with how we were getting on and how we were finding treatments. She also went to London to St Barts and got a second opinion and we went on the same trial at Maidstone a trial with a drug called NGR-h TNF which is Phase three stage.

I failed on this trial and my Meso kept growing but Tess had more bad reactions than me and became very weak.

We have travelled on together and became firm friends holding each other up.

I did visit and take flowers to her from the Mesowarriors when she was down but she failed faster and I saw her just a week before she died. She was permanently in bed and so weak but we had a laugh and a giggle and I told her to have her bed downstairs so she could join in with the family and also go out into the garden.

When we left we cuddled and kissed and she had a cuddle and a kiss from ray. Tess told him to look after this wonderful woman she is so lovely. I laughed and went back for another lovely hug and a kiss.

That was the last time I saw my wonderful friend.

She passed away the day after my birthday.

So we went to the Barham Crematorium yesterday to say goodbye.

Ray and I got there early so we walked around as it was the first time we had been there.

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We were amazed as it is set in the countryside so serine. I always have wanted to go back to Medway but I said to Ray that this is where I want to be as we have made a new life in East Kent.

Tess arrived to her final resting place and we joined her.

Alan was breaking down and when he saw me he grabbed me tight and we both broke down as did Ray.

Oh so sad xx

I asked if I could put the Warriors Dragon Fly with Tess and of coarse I could. So I placed a large golden dragon fly with her. It was a request of no flowers so I will donate to Mesothelioma Uk the money that I would have paid for flowers.

The service was very non religious but so lovely. Alan had planned it all and he really did a wonderful job.

The music on entry was Panis Angelic by Andrew Bocelli.

The a welcome

Chris read The Rose beyond the Wall.

Anna told the life story of Tess. Such a wonderful happy life and she met Alan when ahe was 15.

Then they played a Groovy Kind of Love by the Moonbenders as this was their song. I broke into uncontrollable tears as did so many.

Peter read Turn again to life.

And then Celine Dion’s My Heart will go on. Oh no I wanted to run out as I just could not contain my grief and it isnt about me it is about Tess and Alan.

I really dont know what it was. Was it because I have the same disease and my survival has been so hard so full of fighting. I just found it all so hard to take.

Another poem She is Gone

The Elgar Enigma variations op 36 Sung by the Choir of New College oxford

A poem Afterglow.

We left to Jerusalem.

Everything was so perfect for our Tess our Mesowarrior who has now gained her wings xxx

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We all went outside and Alan hugged me again and I told him how hard it had been to stand there with my friend when we both had the same disease and he said how we had both been such an inspiration to each other.

We then travelled to Broome Park Golf Club just nearby for the wake.

The Broome Park Estate was established during the reign of Charles I and has, as its centrepiece, a magnificent Mansion House; Grade 1 listed building. The house was completed around 1638 and is one of the finest examples of Carolean architecture in England.  The House has been refurbished to its former glory and boasts as one of its many previous owners – Horatio Herbert Kitchener, 1st Earl Kitchener of Khartoum.

It is so lovely in the house.

We sat and talked to the family and friends. School Teachers from North London where Tess had moved from. Once again she to had retired and moved to the coast to enjoy the rest of their lives and that has been cut short by Asbestos.

So of coarse everyone was interested in my trial and my treatment and the fight we warriors have with Asbestos.

We left as it was getting dark and said our final farewells to Alan with another kiss and a cuddle and a promise to keep in touch.

What an emotional day.

http://mesoandme.wordpress.com/2014/09/12/friday-102/ Rays blog –a man of few words but I dont think either of us could put our thoughts down last night bless !!!

 

 

On Twitter I have been discussing the Saatchi Bill as a Doctor is saying I dont really understand it. It is so hard to discuss in just a few words (Thats Twitter) but I truly believe I do understand the Bill and it does apply to my case.

I was looking for for 5th line Chemo. It is not available to a mesothelioma Patient though. It was a case of no more treatment and with my body chemo damaged with peripheral neuropathy where I was losing my balance and falling over and Edema which  is a condition of abnormally large fluid volume in the circulatory system or in tissues between the body’s cells.

I was a mess I know.

I went looking for my own treatment and then went to the Royal Marsden where they are an Innovation Hospital. I put all my faith in them and would have taken any treatment to prolong my life. Any experimental Innovation.

I had backed the Saatchi Bill and been to the House of Commons to Lord Saatchi’s presentation of the Bill and listened to his every word and also to the whole Panels stories of the need for Innovation.

Next day the Telegraph published -- http://www.telegraph.co.uk/health/saatchi-bill/10865847/Saatchi-Bill-doctors-should-embrace-innovation-not-fear-it.html

At the moment, a doctor who uses standard treatments, according to the proscribed guidelines, cannot be sued – even if the patient dies. A doctor who deviates, who tries something new, risks ending up in court.

But some medical negligence lawyers have argued that a change in the law isn’t necessary because current law does allow doctors to try new treatments already.

This is only true up to a point. In a court case a doctor can bring in medical specialists to defend the innovative treatment he tried. If these specialists say that treatment was reasonable, the doctor is safe. This is known as the Bolam test. But a doctor who wishes to innovate still faces the threat and fear of a legal case. The fact that the doctor may have a defence is all but irrelevant – legal proceedings are terrifying, protracted and life-threateningly stressful. Why risk it?

It is this fear that weighs heavily on the minds of some doctors and it is this that adds a dead weight to the desire to innovate.

The Bill simply brings the Bolam defence forward – to the clinic – and cuts out the fear of the long, stressful court case. It lets a doctor consult with a body of medical experts in advance of the treatment. If the experts all agree that the new treatment is reasonable, the doctor can proceed, legally and safely.

So I do need the Bill as my local hospital could not offer me a phase 5 trial and I didnt meet the criteria for a phase 1 trial. But I did meet the Royal Marsdens Criteria for a phase 1 trial and I cant thank them enough for letting me sign my body over and I have signed to say I wont sue if it goes wrong. It is by body so my choice. (After discussing it with my family we all agreed it was my only chance) So I went on the MK3475 /.28 trial. Ok it wasnt to hard as it has shown great results on Melanoma and is proving itself to be a wonder drug. It could have been a drug that had never been used on a human before just out of the laboratories after being tested on Mice, I would have still gone on a trial. I had nothing to loose my Tumour was growing 2mm per 3 months just getting bigger and bigger

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Ok the results have been brilliant with shrinkage in every area and 4 weeks after that result they can see by eye (not having to measure it )there is more shrinkage.

This will give me more living, no one knows how long for as Im leading the way now. Writing my own  rule book here.

I have been enjoying my garden and been doing some projects with lots of help from my husband today we finished the side garden.

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Tomorrow Im attending the Funeral of our dear Mesowarrior Tess. We have lost so many warriors this week as well. It is breaking my heart so please hurry up and Pass the Saatchi Innovation Bill.

The latest on the Bill http://medicalinnovationbill.co.uk/amendments-to-be-moved-into-grand-commitee/

The latest amendments to the Medical Innovation Bill have been published 9th September 2014.

Lord Saatchi’s team worked closely with the Department of Health who sought expert legal and clinical advice, including consideration of this issue by Sir Bruce Keogh, NHS England Medical Director, in devising these amendments to work for patients, doctors and lawyers.

 →Read: Guidance note on latest amendments

 →Read: The amendments

 →Read: The consolidated Bill

You can see the full amendments on the official parliament Medical Innovation Bill page.

The parliamentary process is about refining policy in the light of discussion and debate. We are proud of the fact that since we started in 2012 we have listened to a range of stakeholder interests and that we have moved the Bill forward each time.

The opportunities presented by the Bill being supported by Government and given careful consideration by the medical director of the NHS and other senior bodies means that we are now satisfied that the Bill is in a form which meets everybody’s concerns in the most appropriate way.

We are firmly intending that data collection should be part of the implementation of the Bill.

Discussions as to whether this needs to be on the face of the Bill and how it should be expressed need to take place and we are listening to all sides of the discussion.

Rays Blog  http://mesoandme.wordpress.com/2014/09/11/thursday-99/

Posted by: rayandmave | September 10, 2014

Living With Mesothelioma-My Diary- Louis and his diet

Got up early and wrote a small piece for my friend Nancy a Freelance writer and editor as she has contacted me about my good news with the Trial. So I will put it here when she publishes next week.

I had to get ready to take Louis to the Vets. I really thought he might have a problem with the harvest mite.

I cant believe the trembling wreck Louis turned into as soon as he saw the vets door.

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He started going backwards and coming out of his harness in a busy road. I had to pick him up and carry him in and the lady that had just gone in had to do the same. Little Rosie was a trembling wreck as well.

Rosie went in first then it was time for Louis. First the bandage was wrapped around his mouth as he is known as Mr Grumpy. That really does keep him so quiet and the Vet can carry out a good examination of his belly and legs, as this is where he bites and scratches. the vet said if it was mites you can see them as they are bright orange and high visibility as they glow.

So it seems Louis has dietary problems as he only eats cooked meat. Chicken, lamb chops etc etc. This means he isnt getting enough fibre.

Oh dear he can only have dried food and no chews as he eats far to many of them. The vet gave me some free dried food for an aging dog it has a coating of goose fat he said. I have to put it out with little bits of chicken and pick it up if he wont eat it.

It wont matter if he doesnt eat it as he can afford to lose weight, laughing he said thats a kind way for him to say Louis is a little over weight. You can feel his ribs but he has no waist.

I wondered if he meant me ha ha !!

So we came away and travelled out of the High Street and went to order our gravel for the garden project.

Johnsons Nursery, Whitstable

We met the nicest young sales assistant as he was so helpful. With the gravel paid for and delivery arranged we then had a tour of the Hot Tubs.

from £11,999.99 and they are lovely. You can turn them on when you are out somewhere and it will be all ready for when you get in.

We had a long chat and the idea appeals but I wouldn’t use it in the winter as I can imagine sitting outside and running in afterwards in the snow.

We then went shopping for food and filled the freezer up and that was it, back home and lunch.

Then we went to the park to give Louis a run again. I put the dry food in a bowl with tiny bits of chicken and blow me down he ate some of it. The first time ever. What was left has been picked up. He has had 2 chews and although he is winging for more we are getting through the evening Ok. Day 1 is over.

I emailed my good news of the drug to my Macmillan Nurse and she emailed me back how pleased she was but also added she is expecting her 2nd baby. Brilliant news !!!

I have also been invited on the 25th November to a Mesothelioma Conference at Medway Campus Chatham Maritime. This is where  my Mesothelioma story as Ray worked in the Dockrad so that will be a circle for us.

This is different to what I have been to before as it is a NHS conference and I have been invited through my being a Patient Rep so I will be among so many Doctors etc etc. Like a huge Lung Dog Meet. Im going to find this really interesting and will make lots of notes.

Rays Blog  http://mesoandme.wordpress.com/2014/09/10/wednesday-100/

 

 

 

 

 

Posted by: rayandmave | September 9, 2014

Living With Mesothelioma -My Diary- A very proud Gran today

A very lovely day unfolded through the mist again. Love the sunshine hanging on, the world is so much better and you seem to cope better than a rainy day.

Ray had to go out and he spent a great morning on his own. Thats a rarity for him as he never leaves my side. I enjoyed being on my own and just slowly had a shower and worked in the den answering so many messages and emails.

Helping people with info on my trial and finding more info about what was going on in the Mesothelioma world.

Checking on Warriors that are suffering.

I had a great comment on my wall from my darling Grandson he said Shout out to my gran, Mavis Nye for her incredible strength and courage. Shout out to my Granddad, Raymond Nye who does everything he can to keep her happy, as well as one of the best Granddads a… whatever I am like me…. could ask for.

Bless him he has had a wonderful weekend He had written— the day just gets better, seeing my One Piece Grandstand AMV at closing ceremony and everyone cheering, to find I won the AMV contest. Thank you so much, everyone clapping along and the overwhelming amount Of people cheering me on, it’s the best feeling and I was no expecting it.

Having watched the Video I can see why he won as its brilliant and if you love sport you will recognize the music.

dan at the AMV contest well done

 

 

 

 

 

 

 

 

 

 

Dan in the costume of his character (Ray and I did buy for birthday present )

He has the same entertainment tendences as his Dad.

So after that great morning Ray came home and we had lunch. Then we decided to go to Tankerton where we walked Louis and bought some lovely local fruit.

I had a phone call from Alan Tess’s husband as the Post mortem is over so they have released Tess for her funeral on Friday. We will be going but Im so so pleased we went to see her at home in the last few days of her life. We had a lovely afternoon laughing and giggling and a huge hug as we left I knew we were saying goodbye I just knew it xxxx

Rays Blog  —- http://mesoandme.wordpress.com/2014/09/09/tuesday-110/

 

 

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