A Mesowarrior Diary — Whitstable Community Ad Magazine Celebrates my BEM/ A new norm is happening and we are beginning to emerge into the world again #mesothelioma #asbestos

Life hasn’t got back to normal because of the COVID virus. We live in a very strange world still and feel we are stuck in a bubble.

Zoom meetings are taking place and that is what has kept us sane and able to feel part of the world.

We did escape to go to meet a lovely couple at DSK who are running a great Company at the Sittingbourne Science Park. A very strange place with lots of security, something that.

DSK Environmental is a family-run business. They have more than 15 years’ experience in the Asbestos Industry and have the knowledge and experience to deal with your enquiries effectively. 

Keeping you safe, as well as your staff are their top priority. Their service is of high quality with peace of mind that they meet all hazardous waste removal and fire protective regulations. 

“Every home owner, business owner or duty holder can trust us to remediate and advise on their premises, inline with all statutory regulations and legislation. Because we are a family business, relationships are key to everything we do”.

We had a good meeting and they are backing the Mavis Nye Foundation and we are arranging an event later in the Summer. https://dskenvironmental.co.uk/about

The Whitstable Community Ad Magazine published my story in the Winter issue this bought about 3 Mesowarriors contacting me for help and as they are local to me one lady messaged me to say her husband had been diagnosed. She asked for one of my Mavis Nye Foundation Charity boxes to put into her shop.

Ray and I visited the shop yesterday and took 2 boxes and Brochures. Its the first time we have walked through our High Street since lock down we had a chat with the owner and when we left we found a Costa and had a Hot Chocolate. All so very strange to us after such a long time of not being free. It was great to see people with face masks on so good to see that some are going to be sensible and not listen to the powers that be. The virus hasn’t gone away and I know we have to live with it now but that doesnt mean we relax our protection, so I will wear a face mask in crowded areas, and carry on sanitizing.

I have found out this week there is a forth jab to be had for us venerable ones, I didnt know that so we will phone tomorrow and find out.

We have had the Government letter and test kits if we do get Covid if you haven’t received it please chase

Important information about new treatments for coronavirus.The NHS is using new treatments for coronavirus. Your medical records show that you might be suitable for these treatments if a PCR test confirms that you have coronavirus.These treatments need to be given quickly after you start to feel unwell. They can stop you from getting seriously ill. More information: https://www.nhs.uk/CoronavirusTreatmentsYou should:Have a PCR test kit ready at home.Take a PCR test if you get coronavirus symptoms.If the PCR test confirms that you have coronavirus: the NHS will call you to tell you how you might get a treatment.Coronavirus treatments can help you if you are ill, but vaccination is still the best protection for you and your loved ones.1. Have a PCR test kit ready at homeNHS Test & Trace are sending you a PCR coronavirus test kit to keep so that you can get tested quickly if you have any coronavirus symptoms.This kit will be sent to the address that you have provided to the NHS. Tell your GP as soon as possible if your address has changed. NHS Test & Trace can send replacement tests.Call 119 for advice, selecting the option for Test & Trace, if:you have not received a PCR test by 10 January 2022you develop symptoms before your PCR test arrivesyou lose your PCR test or it has any damage or missing parts.2. Take a PCR test if you get coronavirus symptomsUse your PCR test if you develop any coronavirus symptoms, even if they are mild: a high temperature, a new continuous cough (coughing a lot for more than an hour, or 3 or more coughing episodes in 24 hours), a loss or change to your sense of smell or taste.If you get coronavirus symptoms and don’t have a PCR test kit at home, you can still get a PCR test by phoning 119 or visiting https://www.gov.uk/get-coronavirus-test.When registering a PCR test, it is very important that you enter your NHS number and postcode correctly. This lets you get your test result and allows the NHS to contact you about treatment if you have coronavirus.3. If the PCR test confirms that you have coronavirusIf the PCR test shows that you have got coronavirus, the NHS will contact you within 24 hours to arrange a telephone appointment with a health professional.If you are not contacted about treatment within 24 hours of your positive PCR test result, please contact your GP surgery or call 111. They can make an urgent referral.Why have you sent me this letter?Health experts have looked at the health conditions which put people more at risk of coronavirus. This has been agreed by UK chief medical officers.Your medical records show that you have, or previously had, one or more of those health conditions, which means that these new treatments might be suitable for you if a PCR test confirms you have coronavirus.You can find out how the NHS has used your information to identify and contact you about this treatment at https://www.digital.nhs.uk/coronavirus/treatments/transparency-notice.Yours sincerelyProfessor Stephen Powis
National Medical Director
NHS England and NHS ImprovementIf you need this letter in easy read or other languages, a copy of the letter can be viewed via https://www.england.nhs.uk/coronavirus/treatmentsIf you require this letter in braille or other languages, please contact england.contactus@nhs.net



A Diary Of A #Mesowarrior Living With #Mesothelioma #Asbestos –What part does the Gut Play In Our Cancer??

Scientists are just starting to tease out the microbiome's role in CAR-T outcomes among cancer patients

What does Prof Dean Fennel and Myself have in common? Well apart from the fact he is my Hero as he played a huge part in my Immunotherapy and getting me to the Royal Marsden my gut is the Common denominator.

I know Dean has a huge interest in the Research and since Chemo and my noisy tummy it produced I too have a deep interest in the gut.

The type of bacteria that cancer patients harbor in the gut might affect their odds of responding to certain treatments, two early studies hint.

The research, in humans and mice, adds to evidence that gut bacteria play a key role in the immune system.

But experts stressed it’s too soon to make recommendations to cancer patients — including whether they should take “probiotic” supplements.

Both studies looked at whether there’s a link between patients’ gut bacteria and their responses to newer cancer drugs called PD-1 inhibitors. The drugs, which include Keytruda (pembrolizumab) and Opdivo (nivolumab), work by freeing up the immune system to attack cancer cells.

The drugs are approved for several cancers, including advanced cases of melanoma, lung, bladder and stomach cancers.

In one study, researchers focused on 112 patients with advanced melanoma, the deadliest form of skin cancer. The investigators found that those who’d responded to PD-1 therapy tended to have a gut “microbiome” that was distinct from those of patients who did not respond.

Those who’d responded generally had more diversity in their bacteria, plus higher concentrations of common bacteria called Ruminococcus and Faecalibacterium.

Still, the researchers said the findings do not prove that those bacteria improve the odds of doing well on PD-1 therapy.

“Only a clinical trial can show that. This needs to be tested,” said senior researcher Dr. Jennifer Wargo, an associate professor at University of Texas M.D. Anderson Cancer Center in Houston.

However, the findings build on evidence of a “clear link between the gut microbiome and immune function,” she said.

The “microbiome” refers to the trillions of bacteria and other microbes that dwell in the human body.

Studies have found that the diversity of those bugs — particularly in the gut — is linked to the risks of various health conditions, including those related to immune function.

In general, studies have found, the more diversity in the gut microbiome, the better.

Wargo’s study involved a group of melanoma patients who’d responded to a PD-1 inhibitor — meaning their cancer had stabilized or regressed for at least six months — and a group that did not respond.

Overall, the responders showed an “abundance” of Ruminococcus and Faecalibacterium. In contrast, the non-responders had a high concentration of Bacteroidales bacteria.

To test whether the microbes might have a direct influence on treatment response, the researchers transplanted gut bacteria from the patients into lab mice.

Those animals also responded better to PD-1 therapy, versus mice that had transplants from non-responding patients, according to the report.

In the second study, French researchers focused on 249 patients treated with a PD-1 inhibitor for lung, kidney or urinary tract cancers. Just over one-quarter had taken antibiotics to treat an infection shortly before or after starting PD-1 treatment. (Antibiotics are drugs that kill bacteria).

Overall, those antibiotic patients had lower survival odds. Plus, 69 percent of patients who responded to PD-1 treatment had detectable amounts of bacteria called Akkermansia muciniphila, versus 34 percent of patients who did not respond.

It all raises “exciting possibilities,” Wargo said. Namely, could manipulating the gut microbiome improve the chances of responding to cancer treatment?

But there are plenty of unanswered questions. For one, “We don’t really know what constitutes a ‘favorable’ microbiome,” Wargo noted. So there is no way to tell cancer patients whether any probiotic might benefit them.

In fact, she said, if patients were to take a random supplement, it might end up causing harm. In addition, there also needs to be more research into gut bacteria and responses to other cancer therapies, Wargo added.

Dr. Nikhil Khushalani specializes in treating skin cancer at Moffitt Cancer Center, in Tampa, Fla. He cautioned that the study findings are a “first step,” but also a “very intriguing” one.

Khushalani said the findings raise the possibility of testing patients’ stool samples to see who has a greater likelihood of responding to PD-1 therapy. “That could help us in truly tailoring treatment,” he suggested.

Then there’s the possibility of actually altering patients’ microbiomes — whether through probiotics or even fecal transplants, Khushalani added.

Like Wargo, he cautioned patients against self-treating with probiotics, given the unknowns.

“But that could be where we’re heading,” Khushalani said. “Hopefully, this will open the door to even more research in this arena.”

The new research appears in the Nov. 3 issue of Science.

Anything in a person’s environment — from their dinner choices to their roommates to their pets — can perturb the gut microbiome. Cancer patients risk more severe shocks to the microbiome as antibiotics, chemotherapy, radiation or other treatments can nuke the native, commensal bacteria that reside within us. In the past, researchers have found that antibiotic exposure in particular is associated with worse immunotherapy outcomes, said Stanford oncologist Melody Smith.

“But there’s no peer-reviewed literature assessing the association of the intestinal microbiome with CAR-T cell therapy,” said Smith, who set out to study the topic with collaborators at the University of Pennsylvania, including Facciabene.

In one study, they looked at 228 patients with lymphoma or leukemia who received CAR-T therapy, 47 of whom received one of three specific antibiotics before starting CAR-T treatment. Those patients ended up with worse survival outcomes on average compared to the other 181 patients, Smith said.

Those antibiotics have a tendency to house many commensal species of bacteria first. It might be that the patients who got these antibiotics did worse because the treatment was preferentially killing these “good” bugs. Antibiotic treatment reduces the diversity of the patients’ microbiomes, Smith added, which may have negative consequences for CAR-T therapy.

We know that Chemo kills good bugs as well as the bad.

“The idea is basically that the loss of these bacteria is having an impact on [the immune system] that’s very important for a favorable response to CAR-T cells,” Smith said.Related: Big data is the next frontier for biotech — and they’re scrambling for data scientists

In another study by Facciabene and colleagues, one which Smith was not involved in, the researchers found that giving mice with blood cancers the antibiotic vancomycin had the opposite effect for CAR-T therapy. Mice given vancomycin ended up with significantly smaller tumors after CAR-T therapy compared to mice who were only given CAR-T.

Then Facciabene did a follow-up experiment, this time with the goal of modeling what might happen in a human gut, rather than a mouse one. So, he took fecal matter from four healthy human donors and transplanted it into mice. Some of those mice again got oral vancomycin and, once again, they did better on CAR-T therapy than mice who didn’t get the antibiotic — with one exception. Mice who received fecal matter from one particular donor did worse when they got the antibiotic compared to mice with the same human donor who didn’t get the antibiotic.

The seemingly contradictory results from Facciabene and Smith’s experiments underscore how early the research is — and how complicated microbiome and immune system interactions can be, said Matthew Frigault, an oncologist at Mass General Cancer Center who studies CAR-T therapy.

“You can end up with conflicting outcomes depending on what you’re starting with. Depending on the patient, the region they’re from, what your family has, what your environment provides, can all result in a different microbiome,” Frigault explained. “Maybe having diversity in the microbiome helps to modulate the immune system in a preferential way. Some antibiotics will kill certain bacteria preferentially, and then who knows what you’re left with?”

“It would be nice if it was so nicely packaged. That the same taxa are being identified in different studies, and it’s a eureka kind of moment,” Smith said wistfully.

But Smith and Facciabene are embracing the challenge, and they have a list of hypotheses they want to test. Perhaps there’s some byproduct that certain, even unrelated, bacteria are making that’s affecting CAR-T cells or other cancer therapy. Or perhaps there’s a certain assemblage of bacteria that can promote immune therapy, if you can just get the right healthy donor to provide the fecal matter.

“What I’m trying to understand is how may I get the microbiome to go in the right way, the way that would be synergistic with the therapy we’re doing,” Facciabene said. “We are just starting to scratch the surface.”

Its great to know all this research is going on.

I emailed Dean for any links to this subject and he has sent me links to very interesting papers.

Immune checkpoint inhibitors (ICIs) targeting the PD-1/PD-L1 axis induce sustained clinical responses in a sizable minority of cancer patients. We found that primary resistance to ICIs can be attributed to abnormal gut microbiome composition. Antibiotics inhibited the clinical benefit of ICIs in patients with advanced cancer. Fecal microbiota transplantation (FMT) from cancer patients who responded to ICIs into germ-free or antibiotic-treated mice ameliorated the antitumor effects of PD-1 blockade, whereas FMT from nonresponding patients failed to do so. Metagenomics of patient stool samples at diagnosis revealed correlations between clinical responses to ICIs and the relative abundance of Akkermansia muciniphila Oral supplementation with A. muciniphila after FMT with nonresponder feces restored the efficacy of PD-1 blockade in an interleukin-12-dependent manner by increasing the recruitment of CCR9+CXCR3+CD4+ T lymphocytes into mouse tumor beds.

Good bacteria help fight cancer

Resident gut bacteria can affect patient responses to cancer immunotherapy (see the Perspective by Jobin). Routy et al. show that antibiotic consumption is associated with poor response to immunotherapeutic PD-1 blockade. They profiled samples from patients with lung and kidney cancers and found that nonresponding patients had low levels of the bacterium Akkermansia muciniphila. Oral supplementation of the bacteria to antibiotic-treated mice restored the response to immunotherapy. Matson et al. and Gopalakrishnan et al. studied melanoma patients receiving PD-1 blockade and found a greater abundance of “good” bacteria in the guts of responding patients. Nonresponders had an imbalance in gut flora composition, which correlated with impaired immune cell activity. Thus, maintaining healthy gut flora could help patients combat cancer.Science, this issue p. 91, p. 104, p. 97; see also p. 32

Abstract

Preclinical mouse models suggest that the gut microbiome modulates tumor response to checkpoint blockade immunotherapy; however, this has not been well-characterized in human cancer patients. Here we examined the oral and gut microbiome of melanoma patients undergoing anti–programmed cell death 1 protein (PD-1) immunotherapy (n = 112). Significant differences were observed in the diversity and composition of the patient gut microbiome of responders versus nonresponders. Analysis of patient fecal microbiome samples (= 43, 30 responders, 13 nonresponders) showed significantly higher alpha diversity (< 0.01) and relative abundance of bacteria of the Ruminococcaceae family (< 0.01) in responding patients. Metagenomic studies revealed functional differences in gut bacteria in responders, including enrichment of anabolic pathways. Immune profiling suggested enhanced systemic and antitumor immunity in responding patients with a favorable gut microbiome as well as in germ-free mice receiving fecal transplants from responding patients. Together, these data have important implications for the treatment of melanoma patients with immune checkpoint inhibitors.

Dietary fiber and probiotics influence the gut microbiome and melanoma immunotherapy response

Another benefit of dietary fiber

The gut microbiome can modulate the immune system and influence the therapeutic response of cancer patients, yet the mechanisms underlying the effects of microbiota are presently unclear. Spencer et al. add to our understanding of how dietary habits affect microbiota and clinical outcomes to immunotherapy. In an observational study, the researchers found that melanoma patients reporting high fiber (prebiotic) consumption had a better response to checkpoint inhibitor immunotherapy compared with those patients reporting a low-fiber diet. The most marked benefit was observed for those patients reporting a combination of high fiber consumption and no use of over-the-counter probiotic supplements. These findings provide early insights as to how diet-related factors may influence the immune response. —PNK

Abstract

Gut bacteria modulate the response to immune checkpoint blockade (ICB) treatment in cancer, but the effect of diet and supplements on this interaction is not well studied. We assessed fecal microbiota profiles, dietary habits, and commercially available probiotic supplement use in melanoma patients and performed parallel preclinical studies. Higher dietary fiber was associated with significantly improved progression-free survival in 128 patients on ICB, with the most pronounced benefit observed in patients with sufficient dietary fiber intake and no probiotic use. Findings were recapitulated in preclinical models, which demonstrated impaired treatment response to anti–programmed cell death 1 (anti–PD-1)–based therapy in mice receiving a low-fiber diet or probiotics, with a lower frequency of interferon-γ–positive cytotoxic T cells in the tumor microenvironment. Together, these data have clinical implications for patients receiving ICB for cancer.

Im only just starting to probe so I share the links for you if the subject is interesting to you.

https://www.science.org/doi/10.1126/science.aan4236

https://www.science.org/doi/full/10.1126/science.aaz7015

https://pubmed.ncbi.nlm.nih.gov/29097494/

A diary of a #Mesowarrior living with #Mesothelioma #asbestos

Well 2022 is well underway but my life feels on hold with the Omicron Virus spreading around. So many people have it and I just do not want it.

It interfered with my New Year but mainly because Rays blood pressure went right up and blood sugars went up. The GP said it was too much Christmas and he was right. Ray thinks he can go along as if he didnt have Diabetes 2. He wont listen to me but he has had to listen to his GP.

We do not have trains running from Whitstable to Victoria as so many British Rail workers are off with the virus but that doesn’t matter as we are back Zooming again which helps to make you feel part of the big world.

Now we are at a new wave though and some people have been sensible and got the vaccine booster people are not so ill and this will mean we will get to the finish line and COVID will become a virus once a year like the flu. Thats the plan lets hope it does go like that as we cant keep sitting in.

I have to keep going to the hospital and I have a line flush Monday and a blood test to make sure my kidney is Ok before a scan in Mar.

I have bought a hat hoping that my BEM medal will be presented soon

Never wore a hat before but sometimes you just have too.

Over Christmas the Facebook groups have been so busy. I realised that people were all feeling so alone, well especially like Ray and I where some relatives had the virus and others were scared of getting it. So I sat at the computer and we helped each other through but so many Mesowarriors passed. Why is it at Christmas that so many pass. Others were very ill so I had lots of messages and telephone calls as people panic when its holiday time and cant get help. We have got through together and now the hospitals and doctors are back to normal things have subsided a bit.

At least it has been a very mild winter and Spring has to be around the corner. We will get into the garden again and make the most of the sun.

Always positive thats the only way to be

A Diary of a #Messowarrior –Can 2021 get any better #mesothelioma #asbestos

What a big surprise when I turned the computer on.

2021 Has really been a great year for raising awareness of Asbestos and the Diseases it causes. My BEM was just brilliant but now at the end of the year this has happened

Ian Hart, Safety & Health Practitioner at Informa Markets. Mavis Nye Dr (hon) BEM. BCAh, President and Co-Founder, Mavis Nye Foundation, has been named as SHP’s Most Influential Individual in health & safety for 2021.

She tops the list of the 15 of the most influential people in health & safety in 2021, as voted for by SHP readers. Here we highlight the achievements that have led to these people making the list, including comments from the public vote.

The top 15, listed alphabetically, voted for by SHP readers is: Simon Blake OBE CCMIRachel ButlerCrystal Danbury (CMIOSH)Kate FieldPaul Hendry CMIOSHKeith HoleJessy G.Gill KernickJames MacPhersonHugh MaxwellRory O’NeillIan TaskerJimmy Quinn CFIOSH, IOSH Immediate Past President and Professor Chris Whitty.

Congratulations to all, for the fabulous work you are doing! I echo that as in my eyes you are all winners, Thank you for all the great work you all do to help others

SHP Most Influential is brought to you as part of the wider SHP Awards which, for 2021, is in collaboration with Shirley Parsons.

SHP’S MOST INFLUENTIAL

SHP’s Most Influential figures in health & safety named for 2021

Dr Mavis Nye, President and Co-Founder, Mavis Nye Foundation, has been named as the Most Influential Individual in health & safety. She tops the list of the 15 of the most influential people in health & safety in 2021, as voted for by SHP readers. Here we highlight the achievements that have led to these people making the list, including comments from the public vote.

SHP Awards - Most Influential Feature

SHP Most Influential is brought to you as part of the wider SHP Awards which, for 2021, is in collaboration with Shirley Parsons, HSEQ talent experts. It recognises those who are successfully creating sound health and safety cultures in their organisations, or the profession at large.

The list below was put together from public nominations and then put to public vote. It celebrates people who are inspiring, engaging and have been driving change in occupational health, safety and wellbeing in the UK and beyond, over the last 12 months.

Dr Mavis Nye, President and Co-Founder, Mavis Nye Foundation, voted Most Influential

Mavis Nye

Mavis has been described as a ‘tour de force, and an absolute dynamo for Asbestos Awareness’. She lives with Mesothelioma every day of her life, having been diagnosed with Mesothelioma in 2009.

It was during her treatment, that she decided early on that something needed to be done. Today, she spends her life campaigning for asbestos awareness and removal and her work is internationally recognised. Supported by many influential people, she is in demand for presentations to spread the word.

Previous winners include Hilda Palmer, in 2020, Karl Simons, in 2019, Louise Taggart, in 2018 and John Green, in 2017.

Click here for more on Mavis’ success, why she won and read comments from voters.

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

A Diary Of a #Mesowarrior — HASAG Christmas Party #mesothelioma #asbestos

It was such a great and exciting day Wednesday 8th December. The great escape. At last we were out and about. Catching the train to London to Victoria then a taxi to Waterloo then a train to Portsmouth, How wonderful to be out and about with people again.

Everyone being so kind and helping Ray and I, the world seems to have become so kind.

We arrived at The Inn Lodge Hotel and soon into our warm room.

After a coffee off we went to the restaurant for a evening meal. The family on next table were very talkative and we were chatting away like old friends but a workman on another table was very loud and swearing away in a very high voice.

The women on the next table complained and they were asked to be quiet but he took hum-bridge and went –Hooray!!

The meal was lovely and we were very tired so we walked back to our room and watched some telly until we feel asleep.

Getting up the next day and going for breakfast we met the events manager and had a chat. This lady worked hard all day to make sure everything went well and she succeeded.

After breakfast we both fell asleep again in the room so it was soon 11am and the time we had to vacate the room.

We went to the restaurant and had a coffee where MR Sweary was but he was quieter so it must have been the drink last night talking.

Of we walked and was invited to spend our time in the venue room but people soon arrived and it was great to talk with people I only knew through Zoom.

The Party started and the buffet was wonderful and the cheese cake was really nice.

Then the entertainment. Elvis. He was great and very funny as he headed for me, Oh No! who told him I love Elvis.

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It was a great show and I enjoyed every minute of the afternoon.

So many wonderful raffle prizes that that raised over £800,s Well done.

We were soon being whisked away by Mary and Angharad back to the station. The train was in and we were soon on our way to London, taxi to Victoria straight onto a train to Whitstable then taxi home by 10pm. I went to bed very happy please Virus do one so we can get back to our normal life.

A Diary of a #Mesowarrior #asbestos #Mesothelioma –Good Night Chris Ward RIP

I woke up today to the sad news of the death of a dear friend. A Mesowarrior but a long time friend

Chris always helped me through my journey as he understood the devastating disease asbestos caused and trained people in the trade or the removal of asbestos

Health and safety training

Award Health and Safety training has got to be one of the most hard things to consider for your business – we know.

But – miss one small thing in terms of understanding what applies and where you must be compliant – and you’re vulnerable to prosecution.

Our range of online courses will surpass your business needs. With everything form business skills, health & safety and health & social care skills all under one roof.

Im so so unhappy as we have lost a dear friend to Mesothelioma I was able to talk to him in the week so I didnt know he was so near to passing. He did say that after all these years who would have thought he would go before me. 🙁 I have found the blog I wrote all those years ago.

Chris was with right at the beginning of my story and he sponsored my first award the IATP award. He was alway egging me on to be positive he was always treating me to flowers, and we met up in a camping site here in Kent and had a lovely day together and then I got the sad email from him that he was diagnosed with Mesothelioma. I helped him through finding the right Oncologist and we talked about all the trials and treatment that was going on. He followed all that through and he made wonderful memories with Sylwia his beautiful wife who he absolutely adored.

Then this week we spoke on the phone but he was struggling with breathing but me and my positive advice I said how British Lung Foundation do great class on breathing, they had helped me and I gave all the info on classes by him.

I spoke for a long time with Sylwia and she was positive.

Then this morning his sister wrote on Facebook –Mourning the loss of My amazing Big Brother Chris, who, following a long battle with cancer, passed away peacefully at home, surrounded by loved ones. Will always be remembered with great love .

Devastating

http://onestopmesothelioma111.weebly.com/iatp-mavis-award…. Oh Chris I will miss you so much. You have always been there for me egging me on and bringing such fun into my life. Sylwia Ward I send hugs and all my love to you. You have been the devoted carer to this wonderful man. You world has caved in I havent got the right words to help you as I know how devastated you are. He was the best. ❤ RIP to my wonderful Mesowarrior ❤ Złote serce przestało bić dwoma lśniącymi oczami w spoczynku – Bóg złamał mi serca, aby udowodnić, że bierze tylko to, co najlepsze. Bóg wie, że musiałeś nas opuścić, ale nie poszedłeś sam – ponieważ część mnie poszła z tobą w dniu, w którym zabrał cię do domu. A heart of gold stopped beating two shining eyes at rest – God broke my hearts to prove He only takes the best. God knows you had to leave us but you did not go alone – for part of me went with you the day He took you home.

RIP Chris and thank you for your Friendship

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos –A very busy and interesting week

text and logo over a colored background

This has been a very busy week and thank goodness for ZOOM. I would never have been able to fit all this in if I had to travel.

Monday saw me joining Respublica for Online Safety Bill

Then at 4pm I sat in on the All Party Parliament working party.

I had to fit in a trip to Hospital to have my port flush.

On Wednesday I popped into a Mock Trial at IOSH

Asbestos Hearing of the Parliamentary Work & Pensions Committee was live in Parliament. On behalf of the Forum, Joanne gave evidence to the DWP Select Committee looking into the HSE’s approach to Asbestos Management. Joanne gave evidence alongside Mesothelioma UK, JUAC and Thompsons. https://parliamentlive.tv/event/index/b93a9a0e-333d-43a2-a2c3-bdb5a3a19c14

Then we had a Mavis Nye Foundation Zoom going through all the Finances and planning 2022. It was good to meet up.

I also sat for 2 days at the BOHS We’ve learnt about the automated measurement of airborne asbestos, heard from the European Chemicals Agency (ECHA) on a wide range of topics and listened to many other talks on important issues around asbestos management from industry professionals.

I spoke through a recording telling how my life is with Mesothelioma

Thursday was the day I liked best as it was all about Asbestos and Mesothelioma I was at the Launch of FAAM so I have watched it grow with interest

https://www.youtube.com/watch?v=dLIgwq5sEL8&t=23s

Thursday was a Q&A session for UKAR

Ethex –For many people, the threat of asbestos exposure, related illnesses and even deaths seems a remote possibility, one consigned to the past or highly specialist trades. Unfortunately, this is not the case and asbestos is thought to be present in 1 in 5 workplaces and over 75% of schools and hospitals in the UK, resulting in 50,000 deaths per decade and costing the UK economy billions of pounds. In this panel discussion, we will look at these shocking statistics and highlight the human and financial cost, we’ll explore what the main drawbacks are in tackling the asbestos problem and meet the people that are pioneering change. Our panel of experts will be: Josh Brewer, Ethex (Chair) Andrew Paten, Co- founder & CEO of the UK National Asbestos Register, Liz Darlison, MBE CEO from the charity Mesothelioma UK Mavis Nye, BEM President of The Mavis Nye Foundation Robin Bennett, Director of Start Software (creators of Alpha tracker the UK’s leading asbestos software system for asbestos consultancies and asbestos surveyors.) The panel will also answer questions from attendees in a Q&A session.

—————————————————————————————————————

On Friday it was great to enter Dast Support Group where we relaxed

An Introduction to Mindfulness Presented By: Alan Muskett For: DAST https://www.rightmindfulness.co.uk/blog

Alan-Rightmindfulness-98.jpg

After I became a mindfulness teacher, I realised I wanted to extend my skill-set, as there are so many ways we can get into mental health difficulties, that there must necessarily be different solutions. I trained as a Hypnotherapist (also with the CECCH) in 2019, got my diploma, and have been practising ever since. It strikes me that there are very few of us who would NOT benefit from some talking therapy with the help of mental relaxation and problem solving – sometimes utilising mindfulness too, depending on the problem. Everyone is different!

He sure was different as I really relaxed and thats not a usual feeling for me.

So its been a very interesting week !!!!

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

A Diary Of a #Mesowarrior living with #Mesothelioma #asbestos — A Day out in London at last

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It has been a very interesting week this week.

A return back to normality with a trip to London to 12KBW’s seminar

It was held in the Barbican Centre which once we got out of the taxi it all came flooding back to us and we found our way around the rabbit warren of corridors to find the Frobisher Rooms and into the arms of our old friends. Lots of hugs and laughing after so long in Isolation and Zooms.

There was so many interesting speeches but the ones that stood out to me personally was

Chandler v Cape Speaker Aliyah Akram

Harry Steinberg was a great talk as well about a Family who lost the head of the company and how a judge worked out that the business didnt suffer loosing the man as his family were already involved in the business so therefore profits were not lost.

I could never work in law as you have to know so much and it is too easy to be tripped up and bang you have lost a case. I couldnt live with that guilt.

So I really do admire those that are in Law and thank goodness they are so dedicated to Mesothelioma.

We stayed behind for a drink and something to eat and then said our goodbyes and caught a taxi back to St Pancreas.

The atmosphere on the trains seem so different as we sit there with our masks on.

We found the car in the car park and then the fun began as we drove round to our main road and it was all blocked off. They wer laying new tarmac at 10pm at night. We had to work out how to get home. So near yet so far. The roads seemed so different in the dark, we are not used to being out driving this late. We found our way home eventually so getting home was so welcome.

It had been a good day.

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It was relaxing to Zoom again and stay put.

I have the honour of being a special member Of IOSH So I couldnt miss the last coffee break Oh Jimmy last days of office. He has been so supportive of my work through the year and we have become great friends.

Another great IOSH#President#Networking session hosted by Jimmy Quinn CFIOSH, IOSH President today. Lots of great discussion, offers of help, questions answered and healthy debate. Just as it should be… These will continue going forward as it is really #AddingValue as a resource and opportunity.

Louise A Hosking IOSH President-ElectKeith Hole Dave McPhersonTudor WilliamsCraig FoyleLisa FowlieMichael WatsonJack LargeSean Brill Mavis Nye to name but a few!

Thank you Jimmy you a a wonderful caring man and Im honoured to have made your frienship. I wish you lots of luck in everything you do Keep achieving xx

A Diary of a Mesowarrior Living With #Mesothelioma #asbestos Lets talk about Asbestos

I spoke in a asbestos groups last night saying Im thinking of changing my blog from all about Mesothelioma and talk more of Asbestos as you lads are showing me there is so much wrong in the Industry. So if you dont mind I will be using your wonderful photos and writing about them to rise more awareness.

In our group we are having such a huge problem of folk asking for help after they have done a DIY or had some damage to their home and work carried out by workmen.

Living in a Council house or rented accommodation does mean that the landlord has a duty to manage.

The duty to manage covers all non-domestic premises. Such premises include all industrial, commercial or public buildings such as factories, warehouses, offices, shops, hospitals and schools.

We must keep training the number one priority as COVID has meant there is a huge drop off.

Stuart Banks Replied Mavis the big problem with the construction industry is its vehemently anti qualification ever since I started out 32 years ago blokes have derided any type of book learning or college work the main belief being that you don’t learn anything in college it’s all from site experience. When blokes get sent on short safety courses or any kind of course they love to play the cynical old hand and spend all their time trying to prove the trainer wrong or make him look stupid.That’s why I suppose hse guys often fall back on saying ‘I’ve actually seen blokes killed by a safety hazard like you have created there’ in the hope of waking blokes up or shaming them into listening.I don’t really have an answer for this frankly I’ve spent 3 decades despairing of blokes in the construction industry.(I should say I’ve met some really sound fellas too)

With thousands of public buildings and offices now re-open following lockdown, the UK Asbestos Training Association (UKATA) has raised concerns about their safety following the lack of asbestos training that has been undertaken since the start of the Covid-19 pandemic.

Craig Evans, Chief Operating Officer of UKATA, explained: “Our concern is that the fabric of the many workplaces and public buildings that have been closed during the Covid-19 outbreak, will have declined. The very people who manage the buildings may have been furloughed and therefore they will not have been inspected for deterioration of any asbestos present. This increases the risk of exposure to deadly asbestos fibres for the buildings’ users.”

Duty to Manage training is a legal requirement, however industry figures show the number of workers who have undertaken asbestos training since March has steeply declined and is at its lowest level for five years, prompting UKATA to speak out.

Prior to the Corona crisis an average of 18,000 workers a month completed asbestos training. Over the last six months (March – August), an average of 6,000 workers a month undertook asbestos training delivered by UKATA-approved training providers, a decrease of more than 66%.

Asbestos-related health issues, such as lung cancer and mesothelioma are not identified immediately after exposure to asbestos. It takes between 15 years and up to 60 years, before deadly asbestos-related diseases present themselves.

Craig added: “The latency period of asbestos, coupled with a substantial drop in training numbers, could mean that the UK will be facing a greater amount of deaths from asbestos over the next 15 – 60 years. To reduce this risk, it is important that delivery of asbestos training returns to pre-Covid levels.”

Deaths from asbestos exposure are reaching their peak after widespread use between 1950s and 70s. Since 2018, there have been more than 5,000 deaths annually in the UK from asbestos-related cancers – making it the largest single industrial killer ever seen in the UK.

The HSE recommends that asbestos refresher training courses should be undertaken to help ensure knowledge of asbestos awareness is maintained. The asbestos regulations also make it clear that asbestos training for non-licensable and licensable asbestos works should be carried out at least annually.

Craig Evans added: “It is now vitally important that all building managers and appointed persons ensure that their asbestos training is up-to-date. These are difficult times, but this is a matter of life or death.”

To ensure asbestos training continues to be accessible during the pandemic, back in April, UKATA approved its 200-member companies and individuals to deliver asbestos courses by video conference technology.

The majority of UKATA-approved training providers are now fully operational and either delivering courses remotely online or face-to-face observing social distancing guidelines.

Denny Bolatti Managing Director at Trinitas Group, Co-founder of VINCI Software & Priority Care Health SolutionsMarblesheen Pool Coating Containing Asbestos Removal – Day 2- Smoke testing enclosure- Control air monitoring for asbestos fibres- Commenced jack hammering marbleshhen coating from the concrete pool walls Notice the rough concrete pool surface behind the marblesheen coating

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A Swimming pool Asbestos cement behind the tiles
Asbestos dumped in Lowick.
Asbestos fly tipped by a lazy builder who has contaminated himself now

Chris McCormack Director at Identify Assess & Control Pty LtdI’ve been finding a lot of #friable sheet vinyl recently, the general rule of thumb is; the uglier the design, the more likely likely it is to contain #asbestos. As many of the public are familiar with non-friable vinyl floor tiles, I imagine that this product is at risk of being risk assessed incorrectly by the layman and consequently removed under non-friable conditions or even by non-licence holders (<10m2), no doubt exposing a lot of people to asbestos in the process. The more information on friable floor coverings at hand to the public the better, in my humble opinion 👍Here are a few examples of #friable#asbestos paper-backed sheet vinyl we’ve identified recently. Typically in 1970’s-late 1980’s buildings, these can come in many different colours and (ugly) designs, but the one thing they all have in common is the layer of asbestos paper (typically consisting of up to 100% Chrysotile) is found below a top visible layer of non-asbestos vinyl. If in a good condition, this asbestos-containing product can be easily monitored and reviewed and the risk controlled – even walked upon without presenting a risk to health to the occupants.However, this material is likely to fray particularly around the door entries and other high foot traffic areas, leading to the friable asbestos layer being exposed and posing a medium to high risk of asbestos #exposure to occupants. If that’s the case then removal as soon as is reasonably practicable under friable conditions is always recommended. It’s also a common occurrence that this flooring be found below layers of modern flooring, where it’s not been removed during past refurbishment(s). If ever you’re unsure, contact the industry experts.

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Another questioned

Any chances of this pipe containing asbestos. One of those where I haven’t got a clue! It run from the roof to the basement. Slightly confused of the material
Asbestos can be anywhere in a house built before 2000

So dont ask the question after the event be safe and have a survey first then you know your work place is safe.

https://www.hse.gov.uk/asbestos/duty.htm

https://www.ukata.org.uk/news/concerns-raised-about-safety-buildings-users-asbestos-training-remains-its-lowest-level-5-years/

A Diary Of A Mesowarrior #Mesothelioma #asbestos –The Confirm Trial Results are published by the Lancet

The results of the Confirm Trial has been published in the Lancet this week. It was a trial where Im listed as an Author. I have really enjoyed being part of the team of wonderful Medics, Oncologists etc who have treated me as one of them. It started on phone ins where I couldnt see the faces of the team but because of the Pandemic we was able to use Teams and see one another.

My opinion was always asked for and i did speak up may times. I wanted a crossover but I didnt get it and it had to be placebo. I hate placebos.

I have had to sworn to confidentiality and wasnt allowed to discus with people what was going on but I was allowed to advertise the trial and to get as many mesowarriors to ask their Oncologist about going on the trial and so many did volunteer.

But now I can shout it fro the roof tops that the Confirm trial has been a great success.

The title is Nivolumab versus placebo in patients with relapsed malignant mesothelioma (CONFIRM): a multicentre, double-blind, randomised, phase 3 trial.

ProfDean AFennellFRCPabSeanEwingsPhDcProfChristianOttensmeierFRCPfRaffaeleCalifanoMDgGerard GHannaFRCRhKayleighHillMSccSarahDansonFRCPiNicolaSteeleFRCPjMavisNyedLucyJohnsoncJoanneLordPhDeCalleyMiddletonBAcProfPeterSzlosarekMRCPkSamChanMRCPlAartiGabaMScaLizDarlisonMScbmPeterWells-JordanFIBMSbCathyRichardsFRCPathbGaryDougherty

There is my name in bold. Its just amazing that I read that -Little old me at 80 I just feel so privilege to be part of this team.

No phase 3 trial has yet shown improved survival for patients with pleural or peritoneal malignant mesothelioma who have progressed following platinum-based chemotherapy. The aim of this study was to assess the efficacy and safety of nivolumab, an anti-PD-1 antibody, in these patients.

Between May 10, 2017, and March 30, 2020, 332 patients were recruited, of whom 221 (67%) were randomly assigned to the nivolumab group and 111 (33%) were assigned to the placebo group). 

A good point made There were no treatment-related deaths in either group. That is good to know that it is a safe drug.

Nivolumab represents a treatment that might be beneficial to patients with malignant mesothelioma who have progressed on first-line therapy. Now that is great as it means it can take the place of Chemo. Of coarse the Mesowarriors that cant have Immunotherapy can still have Chemo and it does work well but it kills all the cells good or bad so there is much that has to done in the chemo research to stop it hitting all cells that divide like hair cells etc

Every day, every hour, every second one of the most important events in life is going on in your body—cells are dividing. When cells divide, they make new cells.

Another good point was PD-L1 was not found to be predictive or prognostic in the CONFIRM trial, highlighting the need for other predictors of efficacy for this drug class in mesothelioma. 

So many people in my trial was not allowed to enter because it was thought PDL1 played a part but I had only 1% and won through.

My Bi-ops now show I have built that 1% up to way over 50% which was a surprise for my Doctor’s at Th Royal Marsden.

So the results look promising

The CONFIRM trial showed longer progression-free survival and overall survival with nivolumab compared with placebo in patients with relapsed mesothelioma.

What I do like is the fact it worked well on the rarer Mesothelioma and peritoneal. That is good news.

So I hope that helps picking out bits of the trial as even I have to google some of the words to understand but here is the link to read all the results

This is a great time where at last Mesothelioma is being talked out and the awareness is being raised.

Congratulations to all involved you are our Heroes x

https://www.sciencedirect.com/science/article/pii/S147020452100471X?fbclid=IwAR05fm2YJeVtL0oiuqD3I5jfQUh1moh4nM9P-_7xrBehIllKtKYSdSPEAVM

Scan Photos from Twitter @DrRiyazShah is a great scan of Dual checkpoint inhibition with nivolumab plus ipilimumab (NIVO+IPI) #Mesothelioma. 2cycles of 1st line nivo ipi given within NHS in Early Access to Medicine Scheme.

Once again Nivolumab is playing a great part in Mesothelioma but in another trial Check Mate and the rarer type Sarcomatoid

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