I have managed to keep the pain down and have had a busy 2 day.

I had to tidy the garden and take the weeds that that are growing in between the slabs. How do they get there. Do the seeds land and grow or do they force their way up from under the slabs. Im having the builder come in May to render with cement so the problem might go away.

Then I tidied the bushes so they look better. Ray helped and cut done all the bigger trees for me and lower bushes so we had a good day yesterday.

easter chick

I thought the weather was going to be so nice for Easter but Im afraid it has now gone cloudy and cool. Such a shame for those that have gone away. We have decided to stay at home and finish the jobs I wanted to do. We are going to Peterborough next week so we can get the clothes packed. We need to save our strength as walking around is very tiring. We cant believe we have had our Autosleeper Clubman for 5 years now as we bought her in Peterborough. Ray always gets nervous when i start looking again.

But I love ours as she is a real Classic even at a 2002 model.  She has been good for us.

So I decided today to defrost the 2 freezers i have in the shed. A great idea to have it out of the kitchen, a bad idea when cleaning it out. A you have to take all the food out and make sure it doesn’t defrost. So B you have to work as quickly as you can.

I did it with the hairdryer. That melts the Ice well but of coarse you have to take a bowl of water out there to clean it.

The job was soon done and I was able to put everything back and I ended up with a draw empty just by tidying up.

I felt so good with myself and went in for a coffee and fell asleep.

I sent over some more photos for my Magazine write up, this is going to be a good one as it is all my story from 15. So many years to talk about that I need a series but the have manged to squash it all down. Cant wait to see it in print now.

Rod in Australia has published a greet campaign photo

17/04/2014 – Australia – The World
Tomorrow is Good Friday, a significant day for those of us who have a Christian faith, it is also the start of a four day long weekend (in Australia at least), which means Do-It-Yourself renovation time! Which in a lot of cases means DIY asbestos exposure or removal time! Can you be sure your home doesn’t contain asbestos? Have you had your home assessed for asbestos? DIY Asbestos could kill you many years down the track – worse, as a parent, you could be responsible for your child’s death even after you have died!
Remember, DIY Asbestos Is Dicing With Death – Know The Dangers – Be Asbestos Aware 365 – Act Now…Ask Us How!
- Rod Smith

A great time to warn people

BLF made my video for Take Five which give the same warning

Nancy has written a great piece on Peripheral Neuropathy

It has explained my condition so well, or should I say I have this condition just as she has described it.

Mesothelioma patients often face months of treatment to fight back the growing cancer cells in their body. Most often, though, these same treatments can result in side effects that cause sickness, infections and pain. While many patients are aware of these side effects, some patients are caught off guard from the lesser known side effect, neuropathy, which can potentially become debilitating.

According to statistics, nearly one-third of all cancer patients who receive chemotherapy will be affected by chemotherapy-induced peripheral neuropathy. Chemotherapy can cause nerve damage, leading to shooting pain, burning, tingling, numbness, problems with balance and grasping things, as well as cold or heat sensitivity. Neuropathy can also result from radiation and surgery. Treating this condition has proven to be challenging, and living with neuropathy can negatively affect a patient’s quality of live.

“Peripheral neuropathy is a chronic, debilitating problem, with some patients enduring pain, numbness, and tingling for months, possibly years, after completion of chemotherapy,” says researcher Ellen M. Lavoie Smith, PhD, an assistant professor in the School of Nursing at University of Michigan, Ann Arbor, according to WebMD.

Mesothelioma patients should alert their doctors if they are suffering from neuropathy symptoms from mesothelioma treatment. There are a variety of options available to help patients live a higher quality of life during and after their treatments.

Doctors at MD Anderson Cancer Center sometimes resort to trial and error to relieve neuropathy symptoms for cancer patients. For example, if a patient is still undergoing chemotherapy treatments when the neuropathy starts, “the oncologist may lower the dose or extend the time between doses of the drug that are suspected of causing neuropathy,” said Allen Burton, M.D., chair of the Department of Pain Medicine.

MD Anderson physicians may also prescribe pain medications in conjunction with physical therapy. The combination has proven to both reduce pain and restore the patient’s ability to function. In addition, physicians may try alternative treatments including acupuncture and heat therapy.

The antidepressant drug Cymbalta has been found to reduce neuropathy symptoms in diabetic patients, who frequently experience neuropathy. Hoping to find the same relief for cancer patients, a team of researchers from the University of Michigan School of Nursing, led by Smith, tested the medicine on over 200 people who suffered from chemotherapy-induced neuropathy. According to a 2012 article in WebMD, nearly 60% of the patients experienced a decrease in their pain. Cymbalta was the first drug found to alleviate chemotherapy-induced neuropathy symptoms in cancer patients.

Doctors are just as concerned about a mesothelioma patient’s quality of life as they are in treating the cancer. It is important that patients work closely with their doctor and medical team to find the best option for managing neuropathy.

Sources:
Cymbalta May Relieve Chemo-Induced Pain, Tingling
Cymbalta Reduces Chemotherapy Induced Neuropathy
Neuropathy: It’s More than a Feeling

More articles by 

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. Follow Nancy on Google+

 

Read more: http://mesotheliomahelp.net/blog/2014/04/mesothelioma-patients-work-doctors-manage-neuropathy#ixzz2zAyCbSHb
Follow us: @_mesothelioma__ on Twitter

A friend on Face Book is visiting the Singing Ringing Tree I had never heard of it But Its a Burnley—have a listen x

Rays Blog http://mesoandme.wordpress.com/2014/04/17/wednesday-83/

Yesterday was another childhood sunny day. We seemed to always have summer like this when I was a child. Alway sunny and off to the beach to camp with my school friends. My Dad had a friend in the Dockyard and we went to camp with them at Mister in the Isle of Sheppey.

It was after the war when you could by ex military stock. Well he had bought an Army tent. Huge and they had proper beds in there. It fascinated me.

We enjoyed going shopping yesterday as I wanted to go to Lidl’s as Ray wanted to go to Canterbury to buy a new telly. Once on thing goes everything seems to go The washing machine , my monitor, and now a small telly we have in the den here so I can keep up with my soaps when on the computer each evening.

Well I haven’t been to Lidl’s for sometime, and I loved it. Shopping was really cheaper and also I love buying and trying things I have never had before. Of coarse I love the feeling of Spain, as that is just how all the shops a laid out .

So we came home with as much as I get in Tesco’s but over £20.00 cheaper. Im a happy bunny. Funny how little things can please.

I had a phone call from Take a Break Special this is the summer issue and I have been working with them as they are writing my story in a way it hasn’t been written before. The story was re read to me and Im very pleased with it. So it is a wrap as they say. I have to send a couple more photos today and then its all ready for print.

I also have a email from Mesothelioma Uk to write a piece so I will knuckle down this weekend and write that.

So its all busy. It never stops but I don’t mind.

Well it was tuesday and the Saatchi Bill question and  Answer was on Facebook it was very hard keeping up with the questions but I did get a few asked and answered mainly by Doctor Chan.

One very amazing point we  learnt  is that if you have peritoneal  he said —Paul Sugarbaker is excellent, but Brendan Moran in Basingstoke (Pelican Centre) does the same thing in the UK, as Paul (he trained with Paul in the USA). This is to take the linings from organs ad then hot Chemo –we didn’t know that and our Jan had hunted everywhere for info on her Op as everything was going wrong for her and she died. The sooner we get a central Bank of info the better. We need to know where all the treatments are.

Also that everyone can have a Phase one trial it has nothing to do with how many Chemos you have had previously. They are only done in large hospitals because they generate loads of paper work. and I can see that point.

So we had a great hour and it wasm good to hear that 10’000 votes was good enough to get the Bill passed but they now want to see as many as possible and it will be a great victory.

https://www.change.org/en-GB/petitions/jeremy-hunt-department-of-health-11-days-to-change-medical-history

So please sign the petition and play a part in history and also email to as many as possible lets show the Government that people power makes changes.

Coming to Easter and Decorating -be aware of old Artex old floor tiles lino cornices plaster mouldings pipe lagging old wall boards all could have Asbestos. So Take Five

https://www.youtube.com/watch?v=N-yjmaBlyx0

Rays Blog http://mesoandme.wordpress.com/2014/04/15/tuesday-91/

Photo: Please join our Facebook Chat right here next Tuesday 15th between 8-9pm.</p>
<p>We’re really proud and grateful for all the support we have had from the Duchenne Community, in particular Harrison’s Fund leading the way, with Joining Jack and the Duchenne Alliance</p>
<p>We’re also really grateful for all the support from the Brain Tumour Community Brain Tumour Support (Aunty M)  The Joshua Wilson Brain Tumour Charity – and we look forward to welcoming you all to our chat.</p>
<p>And the Mesothelioma Community – Mavis Nye and all the MesoWarriers.</p>
<p>And of course so many others: Womb Cancer Support UK Chris’s Cancer Community Teenage Cancer Trust AMMF  and all the individuals we can’t tag!</p>
<p>We look forward to chatting next Tuesday.</p>
<p>Please share and invite your friends.</p>
<p>#SaatchiBill” /></p>
<p>I hadnt dreamt it the helicopter was hunting for criminals Saturday night</p>
<p style=Two men were taken to hospital with knife injuries last night after they were assaulted in Whitstable.

A 19-year-old Whitstable man was located by a police helicopter and arrested on suspicion of assault.

The two injured men, also aged 19, had been assaulted in Church Lane, Seasalter, at around 11.10pm.

They were taken to hospital to be treated for knife injuries, described as not serious.

It is understood that the men are all known to each other and the man arrested remains in custody.

 http://www.kentonline.co.uk/whitstable/news/two-hurt-in-knife-attack-15790/

Monday was a lovely sunny and we had to get up 6.30 have breakfast as the dreaded day had arrived for  the Motor Home  MOT.

If you ever want to know a good Garage here in East Kent especially my Motorhome friends http://www.garage-services.co.uk/dargate/how_to_find_us.cfm

We dont have to go far as it is by the Country Park and so we handed the keys over to the Mechanic and walked into the Park. It was empty, no cars with other dogs going for a run.

Letting Louis run around catching the ball it was lovely if a very cold wind.

We came back home and was so pleased that the M/home had passed. There were three of us in our Facebook Mavericks club that had passed so it was a good day just as Easter is coming up.

I had to chase my letter to the Royal Marsden. I hone my Oncologist Secretary and the letter was still sitting on a desk somewhere as there had been something wrong when it was typed? I chased it up and then I rung the Royal Marsden  to see if there was anything to be done to get an appointment. I asked for Dr Rhoda Molife Secretary but was put through to the Doctor herself oops.

I explained what the hold up was but she said she cant do anything until the letter came through. I said I was interested in her work but she assured me there are many Phase 1 trials for Mesothelioma so she will talk to me and find out which one was suitable for my case.I told I new about PD1 therapy with a trial and she said it was showing good results with all Cancers.

Adapted from the NCI Cancer Bulletin.

Results from two early-phase clinical trials presented at the 2012 American Society of Clinical Oncology annual meeting provide further evidence that priming the immune system to attack tumors has potential as a treatment for certain cancers. The findings were also published June 2, 2012, in the New England Journal of Medicine (NEJMhere and here).

Although preliminary, the results are notable because, in both trials, the treatments produced substantial tumor shrinkage in some patients withnon-small cell lung cancer, which has been extremely resistant to immune-based therapies thus far, the trial leaders explained. And in many of these patients, the tumor responses were maintained for a year or more.

“I think it’s one of the most exciting things I’ve seen in recent years,” said D. Ross Camidge, M.D., Ph.D., a lung cancer researcher at the University of Colorado Denver, who was not involved in either study. “A lot of the progress we’ve made recently has been about identifying molecular subtypes of lung cancer and having very specific targeted treatments. The promise of immunotherapy is something that actually cuts across some of those boundaries and may change every single treatment paradigm that we’re currently developing.”

Both studies tested investigational drugs that target molecules known as “checkpoint” molecules, which help restrain immune responses so they don’t harm the body. Tumors can co-opt these checkpoint molecules, weakening the immune system’s ability to eradicate the tumors.

Tumor shrinkage was also seen in patients with melanoma and kidney cancer. Previous studies have shown that these cancers can respond to immunotherapy, and the Food and Drug Administration (FDA) has approved immunotherapies for patients with these tumors. In addition, one of 17 patients with ovarian cancer who received one of the investigational drugs also had a tumor response.

Unleashing the Immune Response

The two drugs tested in the trials are monoclonal antibodies, one of which targets a receptor protein known as PD-1 on the surface of activated T cells. The other drug targets a binding partner (ligand) of PD-1, called PD-L1, which is expressed at higher than normal levels on many tumors and on cells in thetumor microenvironment in response to inflammatory stimuli.

Both agents are being developed by Bristol-Myers Squibb, which was the primary funder of both trials.

In 2011, the FDA approved the first checkpoint molecule inhibitor, ipilimumab (Yervoy™) to treat advanced melanoma. Ipilimumab, however, targets a different checkpoint molecule, CTLA-4, on the surface of activated T cells.

Patients in the trials also had stomachbreastcolorectalcastration-resistant prostate, or pancreatictumors that grew despite multiple prior treatments. Nearly 300 patients were enrolled in the trial testing the PD-1 targeted agent, and slightly more than 200 were enrolled in the trial testing the PD-L1 targeted agent. Both trials tested escalating doses of the drugs, starting with a low dose. If no significant side effects were seen, the researchers incrementally increased the doses for patients who enrolled later.

The results are intriguing not only because of the number of the responses but also because of their durability, noted Suzanne Topalian, M.D., of the Johns Hopkins University School of Medicine, who led the trial testing the PD-1 targeted agent. Among 31 patients who responded to the PD-1 targeted agent and were followed for at least one year, 20 had responses that persisted for at least a year.

Patient Response Rates by Cancer Type
Anti-PD-1 Trial Anti-PD-L1 Trial
Melanoma 26 of 94 patients 9 of 52 patients
Kidney 9 of 33 2 of 17
Lung 14 of 76 5 of 49
Ovarian n/a 1 of 17

The most common side effects of treatment included fatigue, rash, and diarrhea. Other less-common side effects, such as fever, were consistent with the activation of the immune system. Five percent of patients in the trial targeting PD-1, and 6 percent in the trial targeting PD-L1, stopped receiving treatment because of severe side effects, and three patients who received the PD-1 targeted drug died of uncontrolled lung inflammation, called pneumonitis, caused by the treatment.

“The pneumonitis is a safety concern,” said Dr. Camidge. And finding a method to predict which patients are most likely to benefit from these agents will be essential to justify both the risks and expected costs of any licensed immune therapy, he added.

In an attempt to address this issue, Dr. Topalian and her colleagues examined tumor samples collected before treatment from a subset of patients in the anti-PD-1 trial. They found that about one-third of the patients whose tumors expressed PD-L1 had measurable tumor responses, whereas no responses were observed in patients whose tumors did not express the protein. Much more work is needed, she stressed, before PD-L1 could be considered a predictive biomarker of response to treatment.

An Important Pathway

The trials’ impact on immunotherapy research could be substantial, suggested Antoni Ribas, M.D., of UCLA’s Jonsson Comprehensive Cancer Center, in an accompanying editorial in NEJM.

“These initial observations suggest that antibodies blocking PD-1 and PD-L1 are likely to provide a new benchmark for antitumor activity in immunotherapy,” Dr. Ribas wrote.

Additional phase II trials of the PD-1 targeted agent are under way, and phase III trials involving patients with melanoma, non-small cell lung cancer, and kidney cancer are being planned. PD-1 pathway targeted agents are also top priority agents for clinical trials that will be conducted by researchers in NCI’s Immunotherapy Clinical Trials Network.

“We’ve come to this point where we really understand the importance of these inhibitory pathways, which are holding the immune system back from recognizing cancer,” said Dr. Topalian. “By blocking these pathways, we can then drive the immune system to recognize and destroy cancer cells.

“We feel that these findings, in addition to the findings reported in the past 2 years with ipilimumab, have established immunotherapy as a treatment for cancer,” she added.All looks very exciting

http://www.publications.parliament.uk/pa/ld201314/ldhansrd/text/140409w0001.htm#wa_st_91

Department for Education is currently reviewing its policy on asbestos management in schools and intends to publish the outcome of the review by the end of June. The scope of the review includes the conclusions of the Committee on Carcinogenicity’s statement on the relative vulnerability of children and the recommendations from the report Asbestos in Schools: The Need for Action produced by the All-Party Parliamentary Group on Occupational Safety and Health. The Health and Safety Executive publishes figures on asbestos-related deaths—including occupational information—on its website. We do not know of any figures detailing the incidence of asbestos-related diseases in children.

A great site http://www.wecancentre.org/Research/Mesothelioma-Team.html

A lot of good info for us Warriors on this lovely site

Laboratory Research
(Anthony Chalmers, Saurabh Dayal) Mesothelioma exhibits resistance to various treatments including radiotherapy. Upon irradiation, normal cells undergo programmed cell death (apoptosis). Defects in the pathways leading to apoptosis within mesothelioma cells may explain their resistance to radiotherapy. This project aims to overcome this by using Tumour Necrosis Factor-Related Apoptosis Inducing Ligand (TRAIL), an agonist of the apoptosis pathway in combination with radiotherapy in laboratory and animal models. Once the cytotoxic effects of the combination of radiation and TRAIL have been demonstrated we will investigate the mechanisms underlying what appears to be a synergistic interaction. We also aim to identify potential predictive biomarkers of a response to radiotherapy.

Rays Blog http://mesoandme.wordpress.com/2014/04/14/monday-81/

We had a quiet Sunday as I did a little in the garden

Today we had the thrill of getting the Motorhome to the Garage for its  MOT.

We took Louis with the intention of a lovely country walk in the park.

It was very sunny but the wind is bitter cold. Walking into the wind we froze and then turn back with the wind on our backs and the sun on our face it was warm.

Having walked the dog sufficiently Ray and I turned back and went into the waiting room as the M/H was being worked on still. You sit there like a doctors waiting room, waiting to see if the news is good or bad, but our little love didnt let us down and passed with flying colours. Bless her she is already for a good trip out.

Home now and settled with a coffee and our nerves are back in place.

We all have our fingers crossed for two Warriors. James who is in chemo and waiting to go on the Command Trial, and Steve who is waiting to see if  the results of his scan are good or bad, Steve may or may not continue treatment with vandetanib and selumetinib.  However, he’s done his bit for medical research for the time being, so no more “PK” bloods over a 24 hour period – just going back to hospital for monthly check ups if the drugs have worked for him and he decides to continue.

I wasnt dreaming then we had crime come to our door step Saturday night

This becomes very frightening as we never know when these things happen and in a very quiet spot.

http://www.kentonline.co.uk/whitstable/news/two-hurt-in-knife-attack-15790/

Police helicopter helped to track down a 19-year-old from Whitstable after two men were assaulted

Two men were taken to hospital with knife injuries last night after they were assaulted in Whitstable.

A 19-year-old Whitstable man was located by a police helicopter and arrested on suspicion of assault.

The two injured men, also aged 19, had been assaulted in Church Lane, Seasalter, at around 11.10pm.

They were taken to hospital to be treated for knife injuries, described as not serious.

It is understood that the men are all known to each other and the man arrested remains in custody.

http://www.telegraph.co.uk/health/saatchi-bill/10763909/Saatchi-Bill-This-isnt-quackery-its-good-practice.html

Professor David Walker explains why the Saatchi Bill will lead to new therapies for thousands of desperate patients

Prof David Walker

Prof David Walker says the Saatchi Bill will ‘give patients with nowhere else to go additional choice’ 
 By Dominic Nutt
Paediatric cancer specialist Prof David Walker’s work is a bittersweet affair. At times he is able to deliver the happiest of news to parents: that he and his team have saved the life of their child. Equally, he is the one who has to tell a fearful mother and father that there’s nothing more he can do, that their son or daughter’s cancer has spread beyond the reach of his drugs and the surgeon’s knife, and that their child will die.

Based at Nottingham University for the past 22 years, working at Nottingham Children’s Hospital and Nottingham Medical School, Prof Walker combines a passionate commitment to the welfare of his patients with a deep respect for scientific discipline.

He wants to see more and better therapies added to the armoury of paediatric cancer treatments, to save the lives of more children, and is frustrated by the obstacles that block the path to new cures for cancers.

Medical science decrees that no new treatment should be used until it has been thoroughly tested in randomised clinical trials. Trials are the gold standard, Prof Walker stresses, and where possible patients should be in a trial if one is available. “Research does require regulation to introduce new drugs and treatment safely,” he says.

But trials alone cannot meet the desperate need for new treatments, in particular for rare cancers. “There will never be enough trials, they take years, and in any event there are rarely trials for less common diseases. There just aren’t enough patients.

Around one in 600 children under 16 are diagnosed with cancers. The most common, such as leukaemia, account for a third of cases, and treatment success rates are high. But some are hard to treat, other than with surgery, such as the highly malignant rhabdoid tumours, which start in the kidney. There are no standard therapies for these cancers and less than one in five children diagnosed with a stage III or IV rhabdoid tumour will survive beyond four years.

With such rare childhood cancers, it is hard to gather enough patients to form a trial in one country alone, and these have to be organised internationally.

“The problem is that there are many different tumour types and sub-types in childhood cancers, each having an unique biological signature justifying a unique scientific rationale for their treatment with modern drugs in development,” says Prof Walker. “They are all rare in the population and there is a huge element of luck as to whether in your child’s case there is a trial available.”

So, while potential new drugs may exist, they cannot be used. “A drug may be available, the scientific rationale for its use may exist, but patients cannot receive it if no trial has been organised to assess its effectiveness and toxicity,” says Prof Walker.

He also points out that the “big four” cancers – breast, bowel, lung and prostate – dominate media coverage as well as fundraising, research and trials. Researchers want to work on the common cancers because their research will be better funded, while drugs companies are more interested in this area as there is a bigger market, and a greater potential profit.

If you have a less common cancer – and there are hundreds – your chances of getting on a trial are limited and the chances of there being innovative treatments are, in many cases, zero. Yet taken together, less common cancers – defined as a cancer that affects five people or fewer in 10,000 – account for more than half of all British cancer deaths. One in six of us will develop and die from a rare cancer.

The lack of trials in this area means doctors who want to cure their patients, rather than just manage their deaths, are caught in a scientific circular argument. There is no evidence that a new treatment will work, so it cannot be used to find out if it does work.

Prof Walker believes that doctors should be able to try new treatments with such patients on an individual basis. Yet, he argues, the law, and the culture of defensive medicine which surrounds it, stands in the way of innovation. Doctors are protected if they stick to the well-worn path of “standard procedure” even if it leads to the death of the patient. But they may be vulnerable to legal action if they try something new and it fails.

Which is why Prof Walker supports Maurice Saatchi’s Medical Innovation Bill, currently going through a public consultation process by the Department of Health, which ends later this month. It seeks to provide legal protection for doctors who innovate in the interests of their patients. He argues that when patients are terminally ill and there is no trial for which they are eligible, a doctor should be free to innovate.

“We need to allow them to try new drugs outside of a formal trial and collect the data from those innovations to inform the next generation of trials,” he says. “The Saatchi Bill would protect individual doctors who try new, untrialled treatments, where there is a scientific rationale for their use, in patients who consent.

“This isn’t a licence for the maverick doctor acting alone – the Bill obliges the doctor to seek agreement from peers.”

The Saatchi Bill, he believes “will give the patients and their families additional choice and allow doctors to try new medicines in people who have nowhere else to go, and do it in such a way as we could all learn from it”.

Prof Walker also believes that even when an individual patient cannot be cured, this kind of innovation will advance medical science for future patients.

“When people are dying,” he says, “they all would like their passage through their illness to have some meaning and to learn from the loss of their life.”

He also explains that many cancer drug trials rightly focus hard on a tightly defined group of patients with the same tumour type, which has within it a particular cancer molecule, that the drug being tested is designed to block.

Using molecularly targeted drugs in patients with the same tumour drives robust results. But, says Prof Walker, “there is a weakness in the process, because it doesn’t tell you where else the new drug may work. It only tells you that the drug works on a very specific patient type with a very specific tumour which has within it that particular molecular target.”

The new drug may work in another rarer cancer with the same molecular target, he says. “But if I have a patient with a very rare cancer with the same molecular target, I can’t use it. Current rules require us to set up another trial in that tumour, and that’s expensive and requires collaboration with the drug industry, which may not wish to supply the drug for such a purpose if they don’t think it is commercially advantageous. So, in the meantime, the hospital won’t release that licensed drug for an unlicensed purpose because there’s no evidence that it works,” he says.

This is where the Lord Saatchi’s Medical Innovation Bill would help, he argues.

“If we could test drugs in a patient and record our results in an open-access database, this would contribute to our understanding of the application of this drug and perhaps help with selecting new drugs for clinical trial by identifying those with most promise; although it is important that the drug has already been tested fully on patients with a different cancer but with the same molecular signature.”

Opponents of the Bill argue that a law that supports doctors who want to try new treatments outside the trial process is a “quack’s charter”.

Prof Walker disagrees: “To offer an untried treatment and not learn from the process would be quackery.” “But to use untried treatment and to try to learn, responsibly, about the effect on the individual, and share that learning with others would seem to be not quackery, but actually responsible professional practice.”

To urge the Government to enact the Medical Innovation Bill, sign the petition at http://chn.ge/1pqY6lS. For more information, see saatchibill.tumblr.com or tinyurl.com/saatchibill. Follow@SaatchiBill on Twitter

A very slow day yesterday so a lazy weekend. We wanted to go away but I just cant raise the mojo to pack the Motorhome. I cant let each day roll into another like this. I cant waste the precious time, and yet time with Ray and Louis is never wasted as we live another day together.

I think Im on edge about the hospital appointment. I will chase things tomorrow. All this waiting for appointments, scans, treatment, help with our illness it is wasting time I dont have.

I enjoy tidying up everyday and playing housewife better than a patient though. I managed to get everything done while Ray walked Louis, they seemed to tke longer. I like being able to get on, then I think they are taking a long time, and then I start to panic. What if a car has hit them etc etc , the mind goes into over drive. Then I see them coming up the road and Ray says Oh I bumped into so and so we had a chat.

I like nothing has happened, Oh thats nice.

We went to bed last night, I dropped of in my drugged state and was dreaming about a noise that went on and on. I woke up and I wasn’t dreaming.

Lights were shining in my bedroom window so I leaned out and twisted the pole to open the blinds.

A helicopter was very low, very very low.

He was traveling over the homes in huge swoops and so noisy.

This went on for ages and Ray never even stirred.

I wonder who they were looking for. We do get lorries stop  in a layby and they drop off Immigrants so they work on a farm by us.

We do have an estate by us that have naughty young people.

Cars get stolen and they race along the Thanet Way so whether they were being chased and the dump the car and ran for it. All that happens just like the telly but we have to lay in the dark to try and drop off again wondering if the person they are looking for is in your garden.

The mind works overtime on so much doesnt it.

Little Bit amazed at the fact Noel Edmonds is trying to buy the BBC. How strange as out of the blus the story reached us yesterday.

(The BBC should be run as a not-for-profit organisation with adverts and product placement, Noel Edmonds has claimed.

The ex-BBC star turned Channel 4 presenter said the licence fee was “no longer appropriate” and the corporation was “sleepwalking towards total disaster.”)

It would do away with having to pay the licence fee I suppose.

I do love his Deal or no Deal but to see him taking over Strictly come dancing when Bruce finishes.

Weird times this .

Noel Edmonds on Alan Carr Chatty Man

“It’s been fascinating who’s approached me in political circles, people within the BBC, members of the public and some very wealthy people in institutions say this is not the maddest idea ever. It needs a change in the Royal Charter of course but it’s coming up for renewal and unless the politicians do something we are going to have a situation where how much of the BBC is going to be cut apart?

http://www.digitalspy.co.uk/tv/news/a564160/noel-edmonds-talks-buying-the-bbc-its-not-the-maddest-idea-ever.html#~oBig1j0fuN6xXE

We live in Crazy times so anything is possible

With only a few days to go would you please sign for the Bill if you havent alreadyRight now, the government is deciding whether to pass a new law, the Medical Innovation Bill, that will help doctors to find new treatments safely and responsibly for cancer and other diseases.

[https://www.youtube.com/watch?v=ruoTvoxyu4g&feature=youtu.be]

lord saat

For Harrison, 8, who has Duchenne — a 100% fatal condition — and those with cancer and other diseases it is a matter of life and death.

Standard treatments for rare cancers and other less common diseases often don’t work. And in many cases they haven’t changed or been improved for years.

This leaves the patient with a terminal illness no hope, no choice and no chance. 

The law makes it hard for doctors to try new treatments — even when they know that standard procedures are not going to cure the patient.

Offering only the standard procedure guarantees the doctor will not be sued. 

Safely trying something new leaves the doctor open to litigation and the loss of his or her job. 

This is why current law is a barrier to innovation — it creates a culture of defensive medicine in the NHS. 
The Medical Innovation Bill will remove this barrier and help doctors innovate safely on behalf of their patients. 

Jeremy Hunt, Health Secretary, said he would pass the Bill into law but only if the public say they want it. 

Hunt said: “The government should do whatever is needed to remove barriers that prevent innovation which can save and improve lives. The Medical Innovation Bill…correctly identifies the threat of litigation as one such barrier.

There are 33 days left of the Department of Health public consultation and we need your voice.

Help us ensure the Government keep their promise.


“The Bill seeks to support doctors who endeavour to act in the best interest of their patients without the fear from litigation.

“It deters from irresponsible experimentation but encourages a much needed attitude change of innovation in the provision of care to patients.” 

Professor Ahmed Ashour Ahmed, Professor of Gynaecological Oncology, Consultant Gynaecological Oncology Surgeon and Scientist, University of Oxford

Click. Sign. Change medical history.



More info:
The Bill, inspired by Lord Maurice Saatchi has been drafted with help from eminent clinicians, lawyers and judges including Lord Woolf, Former Master of the Rolls and Lord Chief Justice, Baroness Butler-Sloss, former Lord Justice of Appeal and leading Professors from the Oxford School of Medicine, among others.

Rays Blog http://mesoandme.wordpress.com/2014/04/12/saturday-84/

Photo: Please join our Facebook Chat right here next Tuesday 15th between 8-9pm.</p>
<p>We’re really proud and grateful for all the support we have had from the Duchenne Community, in particular Harrison’s Fund leading the way, with Joining Jack and the Duchenne Alliance</p>
<p>We’re also really grateful for all the support from the Brain Tumour Community Brain Tumour Support (Aunty M)  The Joshua Wilson Brain Tumour Charity – and we look forward to welcoming you all to our chat.</p>
<p>And the Mesothelioma Community – Mavis Nye and all the MesoWarriers.</p>
<p>And of course so many others: Womb Cancer Support UK Chris’s Cancer Community Teenage Cancer Trust AMMF  and all the individuals we can’t tag!</p>
<p>We look forward to chatting next Tuesday.</p>
<p>Please share and invite your friends.</p>
<p>#SaatchiBill” /></p>
<div class= 59m

15 days to make medical history: Sign the petition:

I will do a count down and looking forward to the Chat on Facebook

A really fun filled day today, I love days that you wake up at 5.30 and the sun is coming up. Is summer really here

I cant believe they would even dare to blot our Easter with Snow warning.

You cannot be serious you just cannot.

A flurry of bad weather is on the way this Easter – experts have warned.

The UK is set for an ‘Arctic plunge’ in the coming weeks with showers and even SNOW forecast.

“It may well become windy and showery, with wintry showers and snow over high ground in Scotland, but possibly low levels too,” Weather Channel meteorologist Leon Brown said.

Despite many expecting sunny spells and warmer temperatures as winter makes way for spring this month, things could in fact turn colder once more.

“Even though it’s very late in April, it could be more like weather we’d expect in late March,” Mr Brown added.

http://www.mirror.co.uk/news/uk-news/uk-weather-snow-showers-forecast-3395411

So soak up the sun while you can just in case they have got this right.

But Gerald has given me http://www.bbc.co.uk/weather/2635167#outlook Lovely weather

And Andrea has given me http://www.mirror.co.uk/news/uk-news/uk-weather-heatwave-lasting-three-3384697

So now we have to wait to see whose right

I Had a Phone conference today. In all my years in business I haven’t had a phone conference. I have had Sype ones but never a phone where you phone a number and enter a code and then say your name. A electronic voice told me I was the only one in the Conversation. It was 11 the time I was emailed. I put the phone down and did it again. It said I was the only one again so I hung on and low and behold the 2 others came on and I relaxed. We had a long chat about me doing a talk to Doctors and Medics ref my treatment and how I  have found it with my journey within the NHS. I have collected stories from Mesowarriors about their journeys with the NHS so I will be able to weave them in with mine.

So I now know what is expected of me and I can relax a bit as its not June so I will write it over the next few weeks

I have spoken to Liz Darlison Ref Emmerdale and I told her how the warriors had been on the Emmerdale Face Book and put right the ignorance that there is about Asbestos and the story of Donna.

We will make sure and keep inputting on there to help as some are so upset that they have lost someone to he disease so we have given them Mesothelioma UK web link to help them out.

We did manage to go out to our Woodland Park with Louis and all the dogs from Waggy Tails were there as well we haven’t seen them all winter but its been to muddy.

Victory Wood, Nelson's Statue

Nelson was still there and watching over us. We were able to let Louis Run around and he was well tired by the time we got him into the car. He flopped in and laid there panting away.

We bought the little man back home where he slept until I cooked his lamb chops for Dinner. So he is a happy boy tonight.

 

http://www.independent.co.uk/news/uk/home-news/window-display-closed-at-selfridges-in-asbestos-scare-966920.html

I know this is 2008 but it is a good example of how Asbestos is around us and how we must stay vigil

Selfridges has been forced to close the world-famous window display in its flagship London department store for a month after the discovery of asbestos, The Independent has learnt.

The company stressed yesterday that it had taken steps to ensure that the hazardous material – found in the five main windows at the front of its Oxford Street store – was dealt with safely and that there was no risk to public health. The store was not shut while the asbestos panels were removed.

If disturbed, for example by being drilled into or broken, asbestos can release fibres that can cause an incurable, terminal cancer. More than 4,000 people a year die from diseases related to asbestos – more than the annual death toll on the UK’s roads.

After The Independent contacted the store, Selfridges’ communications director, Christine Watts, said the asbestos panelling was discovered about three weeks ago by experts who are currently carrying out a full survey of the building. “It was found at the top of the window frames of five out of the 26 windows. They were sealed immediately and the HSE [Health and Safety Executive] was informed. Everything was done according to HSE guidelines, with approved contractors and so on,” she said.

The asbestos panels were removed last week, while the store remained open. “The windows were sealed up straight away,” Ms Watts said. “The removal has been completed and now the next stage is obviously to rebuild the window frames. It’s an old building and we always check for asbestos whenever we do a refurbishment. On the occasions that it’s found, it is dealt with absolutely in line with HSE requirements.”

Oh well done Emmerdale for covering Mesothelioma and choosing Donna who is a young MUM. Most people think its an old mans disease but this will show this is not true.

7pm sneak peek: http://itv.co/1oQajWm
8pm sneak peek: http://itv.co/1lT712j
 — at Emmerdale Village

Photo: TONIGHT: Donna makes Marlon choose (7pm) and Dom talks of revenge (8pm). Watch the sneak peeks now #Emmerdale</p>
<p>7pm sneak peek: <a href=http://itv.co/1oQajWm
8pm sneak peek: http://itv.co/1lT712j&#8221; />

I have thanked Emmerdale as all the mesowarriors are so pleased.

I loved the way I was receiving messages and notes from my friends it amazes me how many are following my story –thank you all xx

There is so much miss understood about Asbestos

Photo: WORKPLACE STANDARDS GET A LADDER !!

I cant believe they can still say its not dangerous. ALL ASBESTOS KILLS.

I have added the Mesothelioma Uk Link incase people are worried on the Emmerdale F/B page as there is a lot of interest as to what the problem is with Donna.

We had a bit of excitement today as smoke was billowing in the air and There was a fire

TRAVEL: A huge fire in Yorkletts has closed the road (story updated):
http://www.canterburytimes.co.uk/Yorkletts-closes-major-road/story-20941707-detail/story.html

The only sad thing is they found a body in the shed so another story to have to wait and see what happened.

Still no appointment for the hospital. its been over a week now so I will really expect something next week.

I have been planning some days away so they will have to work round me now.

I have been asked to do an Interview with the Guardian That is a nice thing as I like the Guardian but a bit highbrow for me !!!

Yesterday I was given an invite to bring all the Mesowarriors to Saatchi Bill Facebook page for a chat In

Photo: Please join our Facebook Chat right here next Tuesday 15th between 8-9pm.</p>
<p>We’re really proud and grateful for all the support we have had from the Duchenne Community, in particular Harrison’s Fund leading the way, with Joining Jack and the Duchenne Alliance</p>
<p>We’re also really grateful for all the support from the Brain Tumour Community Brain Tumour Support (Aunty M)  The Joshua Wilson Brain Tumour Charity – and we look forward to welcoming you all to our chat.</p>
<p>And the Mesothelioma Community – Mavis Nye and all the MesoWarriers.</p>
<p>And of course so many others: Womb Cancer Support UK Chris’s Cancer Community Teenage Cancer Trust AMMF  and all the individuals we can’t tag!</p>
<p>We look forward to chatting next Tuesday.</p>
<p>Please share and invite your friends.</p>
<p>#SaatchiBill” /></p>
<p>Please join our Facebook Chat right here next Tuesday 15th between 8-9pm.</p>
<p>We’re really proud and grateful for all the support we have had from the Duchenne Community, in particular<a style=Harrison’s Fund leading the way, with Joining Jack and the Duchenne Alliance

We’re also really grateful for all the support from the Brain Tumour Community Brain Tumour Support (Aunty M) The Joshua Wilson Brain Tumour Charity - and we look forward to welcoming you all to our chat.

And the Mesothelioma Community – Mavis Nye and all the MesoWarriers.

And of course so many others: Womb Cancer Support UK Chris’s Cancer Community Teenage Cancer TrustAMMF and all the individuals we can’t tag!

We look forward to chatting next Tuesday.

Please share and invite your friends.

#SaatchiBill

So if your on your computer please join in with us

Carer Linda Wride has written a blog to make clear  and  to join up the dots so as to make sense of all the recent developments in medical research and regulation, insofar as they affect people with mesothelioma

Mesothelioma – making sense of recent developments

April 2014 is shaping up to be a significant month for the mesothelioma community and other people with rare and life threatening diseases.

With announcements about new regulations, draft legislation, new schemes and consultations coming thick and fast, it’s easy to get confused or overlook something.  I thought this would be a good time – between Steve’s end of trial scan and hearing the results next week – to take stock of all these changes, join the dots and look at the bigger picture.

So here goes….

Clinical Trials Regulation in Europe
For mesothelioma and other diseases for which there is currently no cure, the way forward has to be through research and clinical trials.  The problem at the moment is that there is no legal requirement to register clinical trials or publish results.

On 2 April, the European Parliament voted to adopt a new Clinical Trials Regulation.  This will require, amongst other things,

  • All new trials to be registered on a publicly accessible EU clinical trials register before they begin
  • A summary of the results to be published within a year of the trial’s completion, including a summary understandable to non-medical people
  • Clinical Study Reports to be publicly available
There are often not enough patients in one country alone to develop new or improved treatments for rare diseases. The new regulation will make it easier to conduct cross-border, multinational trials within the EU by cutting red tape and simplifying the current rules by having:
  • One straightforward authorisation procedure for all EU Member States, resulting in one single assessment outcome
  • Simplified reporting procedures, with one report for all Member States
  • Applying the same rules about protection of subjects to trials performed outside the EU where they are to be applied to trials within Member States
  • A lighter touch regulation for “low intervention trials”, for example trials comparing medicines which are already authorised
The new regulation will also strengthen transparency and, in the process, avoid the redundancy and duplication which can happen when trials are not conducted and reported on in the public domain.
As far as I can see, this is all good stuff.  There are only two downsides.  Firstly, although approved, the regulation won’t come into effect until mid-2016, when the EU portal and database (currently under development) ought to be ready.

Secondly, it is only concerned with new trials. It does not address the existing problem that we do not have full reporting on all trials for the medicines currently being used.Evidence is routinely and legally withheld, making it difficult to make an informed decision abut which treatment is best for a particular individual.  This harms not only patients but the pharmaceutical industry’s reputation.  Shame on you!

To find out more about All Trials which has campaigned for this change CLICK HERE . There are other useful links on this page.
The Early Access to Medicines Scheme (EAMS) 

This UK government scheme came into effect on 7 April.

EAMS will see doctors working with patients to make innovative and promising drugs available as soon the Medicines and Healthcare Products Regulatory Agency – the UK’s regulator – has signalled that the benefits outweigh the risks following an initial scientific assessment.  Severely ill patients with life-threatening and seriously debilitating conditions will be offered the lifeline of trying ground-breaking new medicines years before they would normally reach them.

The scheme will be funded by pharmaceutical companies which develop innovative treatments, meaning patients will benefit from world-class breakthroughs at no cost to the NHS. Once drug manufacturers have received a scientific opinion from the Medicines and Healthcare products Regulatory Agency, doctors will work with patients to prescribe the drugs when appropriate.

In return, the companies will be able to gain experience of their medicines being used in the NHS and work closely with regulators to look at the value of the drugs, gaining guidance and advice much earlier in the regulatory process.
As a result, the process of patient access will be speeded up and new drugs could be made available to patients months or sometimes years before the treatment is licensed.
The scheme involves a 2 stage approach:
  • Stage 1: Promising Innovative Medicines (PIM) Designation - Based on early clinical data (for example, a Phase 2 trial) where a drug shows early promise, the maker can apply for a PIM.  This can happen several years before the full clinical trial is complete and the drug licensed
  • Stage 2: Early Access to Medicines Scientific Opinion - This will describe the benefits and risks of the medicine and support doctors make a decision as to whether the drug might be suitable to help a patient with a life threatening disease like mesothelioma, for whom there are no other treatment options
Full details of EAMs are now on the website of the Medicines and Healthcare products Regulation Agency, the body responsible for regulating the scheme.  You can read about it in more detail by CLICKING HERE .  The scheme is now up and running, and the deadline for submitting the first applications for a Scientific Opinion is 5 May.
As far as we are concerned, this is wonderful news.  There have been a number of promising clinical trials involving immunotherapy drugs which Steve is unable to take part in because his medical history of autoimmune disease (arthritis) which might skew the drug trial results.  However, if one of more of these drugs achieved a PIM designation and the Scientific Option indicated that in his case, the benefits would outweigh the risk, that would open up treatment options for him in future, which can only be a good thing!
 
The Medical Innovation Bill aka Saatchi Bill

One of the things which holds back the medical profession from taking risks associated with new, innovative treatments is fear of litigation if it all goes horribly wrong.  This is something that the Medical Innovation Bill seeks to address, while still protecting the patient’s interests.

The law as it currently stands dictates that patients are only offered standard treatments.  However innovation departs from standard treatment.  The Bill supports doctors who endeavour to act in the best interests of the patient without fear of litigation.

It deters irresponsible experimentation but encourages a much needed attitude change in favour of innovation in the provision of patent care.

The Health Minister has said the Government will support the draft Bill but ONLY if it has public support.  You can read more about the Bill and add your support by CLICKING HERE!  The consultation closes on 25 April.

Please, please, please support this Bill.  It’s an important piece of the jigsaw.

The EAMS scheme described above will only work to patients’ benefit if the medical profession is bold enough to take advantage of it and prescribe promising, but unlicensed, drugs to patients who need a lifeline, having exhausted all other treatment options.  Doctors are far more likely to be prepared to make such decisions if the fear of litigation is removed.

The Bill proposed by Maurice Saatchi (who lost his wife to cancer) would give the medical profession the reassurance it needs that innovation won’t lead to litigation if decisions are made with care, the best interests of the patient at heart, and based on the best information available.

Moreover, it will cover innovative medicine of all types – not just drugs, but also surgery and other medical procedures, and therefore benefit a wide range of patients who might otherwise die before today’s innovation becomes tomorrow’s gold star treatment or cure.

Mesothelioma Priority Setting Partnership (PSP)
With avenues for research, clinical trials and innovative treatment opening up as a result of the developments described above, it is of the utmost importance that patients, their families and carers have an input into setting priorities for research into the disease.  The Mesothelioma PSP has been consulting widely with this group and with the healthcare professionals who treat them.

The consultation is due to close 30 April!  If you fall into this group and have yet to give your views on what research would make a difference to you and what researchers should be working on, then please go the the PSP website and complete the questionnaire before it’s too late.  This is your chance.  Use it!

To access the survey, please CLICK HERE!

So what does it mean to us?
If you managed to get this far, well done you – and thank you!

As I’ve been writing this, it’s helped me gather my thoughts on our situation….

Steve had his end-of-trial scan on Tuesday.  Next Monday, we will find out the results of the scan and whether taking the combination of vandetanib and selumetanib in the VanSel Early Phase clinical trial has stopped his cancer growing or spreading.  If the side effects of treatment are anything to go by, something must be happening, but whether it’s happening to the cancer cells as well as normal healthy cells we will have to wait until Monday to find out.

We are both aware that these drugs are primarily aimed at people with non-small cell lung cancer.  It remains to be seen whether they act the same way on mesothelioma.  However, if you don’t test, you will never know.   So if it doesn’t work out, at least we will not be plagued by thoughts of “what if….”

When Steve started the drug trial back in early February, we had no idea that the developments summarised above were even a twinkle in someone’s eye.  The fact that they have reached these various stages by the end of the drug trial brings me hope that Steve will have other treatment options in the not too distant future, if the Vansel combination doesn’t work for him.  Those of you in a similar position will know how good that feels.

Take away treatment options, and you are likely to take away hope – at least until a cure is found.  And it will be found, one day.

A huge and heartfelt hank you to all those who are working on it!

Oh dear when the computer goes down doesn’t it make you realise how you really use it everyday to communicate to the world.

We had to rush around and buy a new Monitor as thank goodness that was the problem and not my Tower. Ray checked his monitor on my computer and it was Ok and we was able to recover on start up and pressed F8. after several tries every thing was good.

So off to PC World/ Curries much to Louis delight as he loves the walk around the business park and the perimeter.

I have been talking about the Saatchi Bill and Fast track all in one sentence but its taken My dear friend Linda Wride patients to finally make me see that the Fast track isnt going through a Bill. It is coming in April 14th

https://www.gov.uk/government/news/cutting-edge-drugs-to-be-fast-tracked-to-patients

The scheme will make the UK one of the best countries in the world to capitalise on breakthroughs in medical care.

The Government is determined to strengthen Britain’s science, research and development industry to as part of its long term economic plan.

Severely ill patients with life-threatening and seriously debilitating conditions will be offered the lifeline of trying ground-breaking new edicines years before they would normally reach them.

The Early Access to Medicines scheme will see doctors working with patients to make innovative and promising drugs available as soon the Medicines and Healthcare Products Regulatory Agency – the UK’s regulator – has signalled that the benefits outweigh the risks following an initial scientific assessment.

The scheme is an important addition to the pharmaceutical sector, providing a platform for drugs to be brought to patients at a much faster rate than ever before. The companies will be able to gain experience of their medicines being used in the NHS and work closely with regulators to look at the value of the drugs, gaining guidance and advice much earlier in the regulatory process.

I contacted Lord Saatchis office to explain how I have muddled it in my head and had a return email.

Hi, Mavis.

The Early Access project is different – but it does relate, by chance, to the Saatchi Bill.

The Early Access scheme will allow doctors to use drugs that have not been fully tested. The Saatchi Bill will help doctors, by giving them confidence to use these drugs – knowing they can’t be sued if they don’t work.

So Saatchi helps early access. But Saatchi will also help all sorts of other doctors do all sorts of other thing – for example it will help doctors try different surgical techniques for example. The Saatchi Bill isn’t restricted to drugs.

Does that make sense? ——-

Weeell It does now xx

So we are still trying to get the Saatchi Bill through so they can run side by side.

So please sign if you havent already http://saatchibill.tumblr.com/

So now we have that clear in my head Linda can at last sit back —BY George she has got it.

I wish her husband all the luck with his Trial as he has a scan Friday to see whether the trial is working, I wish lots of luck and my fingers are crossed.

It hasnt been easy for him Linda wrote of the frustrating journey they had–

Steve will have finished the third week of cycle 2 of the VanSel1 clinical drug trial.  Just one more week to go before we know whether it’s all been worthwhile.

When asked how he’s doing these days, Steve’s stock answer is that he has felt better, but it’s bearable.  Which is true up to a point.  None of the horrible metallic taste associated with standard chemo.  Not a lot of nausea.  No tingly fingers or toes (peripheral neuropathy). No need for blood transfusions or problems with low white blood cell counts, compromising his immune system.

But the fatigue is still there – he has little energy, so has been taking it easy most of the time, over the last 10 weeks. Daily diarrhoea takes its toll over a sustained period. He literally feels drained, although taking imodium is usually an effective way to manage this side effect.

There have been stomach cramps and times when his appetite has all but disappeared – one day, he couldn’t even finish the banana he thought he might be able to eat for one meal….Then there are times when he suddenly feels the need to eat or become nauseous.  All completely unpredictable, so no point in spending a lot of time cooking elaborate meals.  We need things which can be prepared very quickly when needed, and can be eaten in small batches. Tapas to the rescue!

http://doingsomethingpositive.blogspot.co.uk/2014/04/vansel1-drug-trial-cycle-2-days-22-23.html

I hope they get good news.

I have to knuckle under and write 2 talks and a article for a News Letter about the warriors and the Saatchi Bill I will always have the Acting U.S. Surgeon Generals Speech on my mind at the ADAO Conference it teaches us how being up beat is more powerful than being sad all the time.

Fun and Laughter work wonders, people wake up and listen x

Talking about Asbestos roof tiles and cladding on houses and how they are still on some houses today

Asbestos in roof tiles

Asbestos-containing roof tiles (occasionally referred to as shingles) are still common on British roofs. Because asbestos is a mineral they are often covered with moss and/algae.

These tiles are low risk when left in-site because they are hard-wearing, but, when removed there can be significant fibre release (especially if the tiles are damaged during the process).

made me suddenly say to Ray we have Asbestos on our Shed roof and we bought that in 2000.

Oh dear 86 % of the sheds have the same roofs. So a bit of investigating will be done tomorrow as I know they are safe if not touched and they are in very good condition but I wonder how many sheds do have asbestos roofs still today.

The latest Article to back the saatchi Bill

image

Pictured: Geoffrey Keynes

The word ‘lumpectomy’ was a surgeon’s insult.

The surgeon Geoffrey Keynes could arguably be considered the patron saint of innovation. In 1922, Keynes, based at Barts Hospital, in London, developed the lumpectomy for breast cancer.

He did so in the face of global ridicule and hostility from fellow surgeons. He was swimming against the tide of orthodoxy, which he described as a religion that could not be easily challenged.

The accepted practice for dealing with breast cancer, developed by the all-powerful American surgeon William Halsted, was the ‘radical mastectomy.

The ‘Halsted Procedure’ was revered. This physically deforming operation involved removal of the breast tissue, skin, nipple, axillary lymph nodes and the underlying chest wall muscles.

It caused a great deal of psychological upset in many who underwent the procedure. It was a horrendous – but no one challenged it. Keynes – the brother of economist John Maynard – began using local excision and radiation therapy to treat breast cancer.

More than 70 percent of his patients survived five years – his survival rates were the same as those patients who underwent the Halsted operation, yet without the horrendous side-effects massive, debilitating surgery. For his pains he was ridiculed.

The Halsted brethren nicknamed the procedure the ‘lumpectomy’ – a low-minded joke.

In his autobiography, Keynes wrote: “A built-in dogma of thirty years standing dies hard, and I was regarded with grave disapproval and shaking of heads by the older surgeons of my own hospital.” Keynes then went on to develop new blood transfusion techniques which saved lives in WWII.

The Saatchi Bill is designed to support doctors who want to change things for the better but fear doing so because culture and law is against them.

What has the Saatchi Bill got to do with culture? How would it help a modern-day Keynes?

Innovation is change and change is uncomfortable. The law is one barrier to change, and it is a barrier that engenders and encourages a wider culture of inertia.

Changing the law, will encourage more doctors to innovate, and to pass on the sense of enterprise to others around them.

They in turn will pass on that enthusiasm and sense of hope that incurable diseases can be treated.

The Bill will be a fire starter.

Sign the petition for the Medical Innovation Bill:  http://chn.ge/1pqY6lS 

Rays Blog http://mesoandme.wordpress.com/2014/04/09/wednesday-82/

Oh dear what a wet morning this morning. Ray took Louis out and they both got so I had to rub them down with towels.

So hot coffee made and drunk.

I worked on the computer sorting emails and then made a homemade soup for lunch.

Of shopping and I had made a list to stick to and the Bill still almost hit £100. I cant believe the way prices are going up and the quality is going down.

My Son phoned and he was saying the same thing. We have come to the conclusion we have to find a good butcher. I have farm shops all around us but he hasnt.

I did make a list from http://www.netmums.com/family-food/cooking-tips/kitchen-cupboard-basics

So I have a great store cupboard and I did make  http://www.netmums.com/family-food/family-recipes/budget-recipes/bacon-wrapped-chicken-with-leeks-peas-basil

Bacon wrapped chicken with leeks, peas & basil

Ray has enjoyed.  Louis had his chicken livers so we are fed and happy.

So the site is great for planning simple easy meals.

http://www.netmums.com/user/choose_location great for finding farm shops to.

My young brother phoned for a chat so that passed the afternoon well

I had an email to tell me that I had a Donation to my Just Giving. It is the nice Solicitor that was on the Interview with but saying he didnt think we needed the Innovation Bill. i have explained why I spoke and backed it and he now understands more about the bill. It was so good of him to Donate to Mesothelioma UK. Thankyou so much Mr  Nick Fairweather it was very good of you.

I also had an email from my New friend in Boston.

He said –I am sorry to hear that the meso is progressing. I hope that you and Ray are doing ok and taking it in stride. The Marsden is a wonderful institution and we respect them highly – our CMO Joanna Horobin was recently visiting with them and we hope to be working with them on some earlier-stage compounds later this year. They certainly have the best insight into the ongoing trial work and I am quite pleased that you will be seeing them as you are in good hands.

My crazy travel life continues and I am sure to be back to England soon. This time I will demand to see you! I am so energized and encouraged by the mountains you are moving. You are a very inspiring person and I hope that myself and the team at Verastem can act according to your model. We will continue to push to find better treatments and hopefully change the course of mesothelioma.

Im so happy to inspire a wonderful young man and I will meet him again as it seems he won’t take no for an answer. ha ha !!!

Im getting so much good feed back on the Marsden Im beginning to look forward to meeting them and to find out what we can do to work together to gain me more years.

I had an email thanking me for going to House of Commons regarding the Early Access Scheme


A message from Claire Halpin

Dear Mavis,

Claire Halpin, widow of Empower founder Les Halpin, conveys her thanks to those who came together for the manifesto launch on 25th March. Claire only wishes Les had been there to see the huge step taken with the Early Access Scheme.

Thank you

I would like to say a huge thank-you to everyone who came to, or was involved in the

Parliamentary Lobby on Tuesday 25th March. Especially I would like to thank: Jennifer

Bryant-Pearson, the 3 James’, Patrick and the rest of the team at JBP who organised the

event; to Geoffrey Clifton-Brown who hosted it; and to the inspiring and moving speakers

who took part. It was a fantastic event, and one that Les would have enjoyed immensely -

I am just a little sad that he wasn’t able to be there.

The campaign was launched only 18 months ago, and has achieved an awful lot in the

time it has been going. I know that there are a lot of groups and organisations working

to achieve the same and similar aims as Empower and it is largely thanks to all of these

putting pressure on the Government that we have achieved the recent breakthrough -

the Governments Early Access Scheme. It seems to me that what Empower brought to

the table was the bringing-together of many of these groups, to form a collaboration

of people working together for a common aim.

As those of you who knew Les will know, he was a great networker. Many was the time

when I heard him in conversation with people and posed with the question ‘what can

we do about…this or that’, say ‘I know someone who might be able to help you with

that – I’ll put you in contact with them’.

A good friend of mine once said to me that Les was one of the most charismatic people

he knew. I could never see that of course, but there must have been something in it

because everywhere he went, he made new friends, and what’s more, kept in touch

with them. So by the time he reached his mid-40s, he had this huge circle of friends

and acquaintances, and he took great pleasure in introducing people to one another

whenever he found that they had a common cause or interest.

 

Don’t forget you can show your support for the manifesto on Change.orghttp://www.change.org/en-GB/petitions/uk-government-and-european-medicines-agency-put-patients-at-the-heart-of-medical-innovation-3

You can also encourage your MP to show their support for Empower by

signing this Early Day Motion http://www.parliament.uk/edm/2013-14/1250
Thank you

Claire Halpin

Empower: Access to Medicine

Website: www.accesstomedicine.co.uk

Twitter: @empoweratm

Facebook: Right to Try

Email: info@accesstomedicine.co.uk

Rays Blog http://mesoandme.wordpress.com/2014/04/07/monday-80/

We have had a good weekend although I know on the back of both our minds is what we will be doing in a month or two. What treatment is going to happen and weather Im still strong enough to to take more poison into my body. Lots of lovely messages from Doctors and friends telling me the Royal Marsden is a brilliant hospital. We will see when I do get there.

Its all jumbled up world at the moment.

So we just took Louis for a walk Saturday and Sunday. Spring Flowers and blossom are in peoples gardens so the pretty time of year has broken through.

I have been watching livestream and the ADAO Conference. You can watch as if you are there and I felt I was as Linda kept mentioning my name. I felt like the little girl sitting on the stairs listening to the conversation but get caught out.

Photo: Sinem Kankotan shares information from Turkey about the dangers of asbestos in dangerous shipbreaking activites and other industries. Asbestos is a worldwide killer.

Photo: The acting Surgeon General, Rear Admiral Boris Lushniak, is awesomely inspiring!

The acting Surgeon General, Rear Admiral Boris Lushniak, gave a very awe inspiring talk. He didn’t have notes he came out front away from the stage and he interacted with the audience and this meant he got the message across so much better. A lesson to me to copy in future talks that I give. He did use my method of making people laugh. there is so much doom and gloom in the Asbestos World and making it more up beat I hung onto every word.

Washington, D.C. –  April 2, 2014 — The Asbestos Disease Awareness Organization (ADAO) applauds the statement today from Rear Admiral Boris Lushniak, Acting U.S. Surgeon General that “There is no known safe level of asbestos exposure and precautions should be taken to protect your health.” As his statement explained, “Scientists have long understood that asbestos can cause mesothelioma, lung cancer, and other lung diseases when the fibers are inhaled…Apparent symptoms and disease may take many years to develop following exposure, and asbestos-related conditions can be difficult to identify.”

As soon as we a get a you tube of his speech I will share as he really did have a lot of good information.

http://www.asbestosdiseaseawareness.org/archives/23777

Here is the agenda -There was so many speakers I dont know how they manage to put ot all together. So much information that it is hard to take it all in and so many sad stories. To think I had been told I had a rare illness when my story started. Oh how wrong the Doctors are. So many people all around the world have mt disease and we all tell the same story. No sign of it until we get fluid in the Lung and we start to find breathing so hard.

So its all over for another year.  Thank you Rod for keeping me company right into the night (early morning for you ) I had fun chatting to you XX

Rod Smith

bernie banton x

 

 

 

 

 

 

 

 

Ray hasnt done a blog as he has been sorting out a naughty bug in his computer he has written on Face Book —Hi again. One of the online recommendations was malwarebytes which I had. It said this will remove lafluria when nothing else will. Having tried loads of others and even the manual approach Malware found about 15 entrys on my pc. It removed it no trouble. But damage had been done I have slowly been repairing it. Ive still got a problem with our web site although its still up I have a small problem which I am getting round but I would lile my server to sort for me. I am still waiting. But at least the puzzle page will be up as normal tomorrow. So as they say Normal service will resume tomorrow ha ha !!

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