Living With Mesothelioma -My Diary- Saatchi Bill is getting so much publicity through the Interviews of people that were there on the day


They have improved the quality of the Your tube copy of the Saatchi Bill

Today has been a good day with both of us resting but then it was so cold out they say we might get snow and I can believe that, but hope not.

I wrote to the solicitor in my interview as he has got the wrong idea of the Bill when he said “of coarse drugs have to be trialed -Thats not what the Bill is about. Its about all the drugs that have been trialed that might be a match for the patient.

My Letter to Nick Fairweather
Thankyou for appearing on BBC SE .
Im not asking for untested drugs.
But drugs that have already been tested for other cancers might suit my fight.
It means that we will get a better treatment. They can look at my bi-op and see if the cells are like- say Breast cancer or bowel cancer and personalize a treatment for me.
Also why cant I have Phase one or two trial. All the trials are for phase 1 and 2 not for my 5th Line. I have lived to long and Medical treatment hasn’t caught up with me. Im the first 5th liner in K&C they just dont know how to treat me.
Im searching the country for treatment.
Drugs are tested in US and then they come here and have to be retested again even with a Placebo. So much time and money is wasted. While Im left to die.
Lord Saatchi Bill is needed and needed today and I will fight all the way.
Kindest Regards Mavis Nye

I did get an email that pleased me as I have been campaigning with Macmillan and received this .

Dear Mavis
As you may remember, we wrote to you in November about worrying reports that people terminally ill with cancer were having to wait up to two months to receive their benefits.
More than 3,000 of you supported our campaign calling on the Department for Work and Pensions (DWP) to ensure that this process took days, not months. I’m delighted to say that we’ve had some fantastic news. The disabilities minister, Mike Penning, announced in an interview on BBC’s Radio 4 yesterday that they have reduced the waiting time to around 10 days, and are working to get them even lower (scroll to 45 minutes to hear the piece).
This is amazing progress and wouldn’t have been possible without your support: thank you.
The work doesn’t end here though, and we will continue to work with the government to ensure the benefits system works for people with cancer.
Find out more about the campaign here. http://www.macmillan.org.uk/GetInvolved/Campaigns/Putthefairintowelfare/PutTheFairintoWelfareCampaign.aspx#
All the best,
Ceri Smith

Ray made a video from the BBC SE News for me to share with anyone outside of the UK 

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Please watch this interview the Bill is not only about Cancer but about all Diseases This is the little boy whos father was with me for the Saatchi

http://www.bbc.co.uk/programmes/p01rr63

The Father of Harrison was there for the Bill reading and spoke so well about his life. He looks so sweet but on the inside, his powerful little boy is struggling. His muscles are deteriorating at an alarming rate. Because he has Duchenne Muscular Dystrophy. Is getting worse.

Our goal is to stop Duchenne, or at least find a way to slow it down significantly, before it has a chance to dim the twinkle in Harrison’s eye.

Harrison was diagnosed in January 2011, a day that we will never forget – one blood test changed everything. Numb, we had to start down a path we never dreamt we would have to follow. We had to take those first steps that no one is ever taught. Our immediate thoughts, like all parents in this position, were to secure the best possible care for Harrison, and we are lucky to be close enough to the fabulous teams at Great Ormond Street Hospital.

Having spoken to some of the best organisations in the world fighting Duchenne, it’s clear that for the very first time there may actually be a chance of a major breakthrough. Over the past few years, scientists have made giant strides in gene therapy and molecular medicine, and pharmaceutical companies have begun investing in research that may well bring Duchenne therapies to market.

So many people have such heart wrenching stories . We do need the Bill it will change how the doctors treat us.

http://www.harrisonsfund.com/

Prof Dean Fennell

Then I found Patent Talk through Mesothelioma UK  Prof Fennell has been working hard for Mesothelioma

We are very proud to publish our latest interview with a  leading clinician.  Today we are interviewing  Prof Dean Fennell one of the world’s leading cancer researchers.   Prof Dean Fennell is currently Chair of Thoracic Medical Oncology at the University of Leicester. Top find out more about Prof Fennel and his work please go to his web page – http://www2.le.ac.uk/departments/csmm/people/professor-dean-fennell

We are very proud to publish our latest interview with a  leading clinician.  Today we are interviewing  Prof Dean Fennell one of the world’s leading cancer researchers.   Prof Dean Fennell is currently Chair of Thoracic Medical Oncology at the University of Leicester. Top find out more about Prof Fennel and his work please go to his web page – http://www2.le.ac.uk/departments/csmm/people/professor-dean-fennell

In this interview Prof Fennell tells us more about his current research into Mesothelioma.  You can read our previous article on the subject here http://patienttalk.org/calling-the-cancer-community-new-study-harnessing-ground-breaking-science-offers-hope-to-mesothelioma-patients/

PATIENTTALK.ORG What is Mesothelioma and how does it differ from other types of lung cancer?

PROF FENNELL Well Mesothelioma is a cancer that is unique and it is unique because it is one that we know is caused by a specific substance.  Just in the same way that people would associate tobacco with the majority of lung cancers.  Mesothelioma is almost invariably associated with the substance asbestos.  This is a mineral which was used for its phenomenal insulating properties dating back as far as the Romans actually but the problem has been that with the use of asbestos in the 20th Century those individuals that have come into contact with it have been exposed to essentially a carcinogen that causes this disease and it take around thirty years to form.  I suppose the main thing that defines it in terms of how it behaves compared with lung cancer is that this is not a cancer that flies around the body and spreads rapidly to distant parts of the body.  It tends to stay within the chest.  It tends to create a straightjacketing effect around the lung and really the symptoms of this disease are related in part to the fact that this is confined to the chest rather than spreading to say the bone or the brain or other parts of the body.

PATIENTTALK.ORG How common is it?

PROF FENNELL I think this is a problem that we are facing with Mesothelioma.  We are in the wake of an epidemic.  The epidemic is not just a national emergency it’s part of a worldwide problem that we are facing.  Particularly in Europe and this because of the timing I think of the exposure.  The maximum exposure was seen in the order of around thirty or so years ago and when just now we are able to see a dramatic rise in the incidence.  So we see around 200,000 patients a year at the moment.  We think the rate is going to increase over the next decade it may extend beyond that but certainly up until the middle of the 21stCentury we anticipate that the numbers will be much higher than historically seen, certainly before the seventies.

PATIENTTALK.ORG What is the typical treatment for Mesothelioma and the typical prognosis?

PROF FENNELL Well there is only one, what we can define as NICE approved standard of care for Mesothelioma.  About ten years ago a trial was conducted and the result of that trial is today’s standard therapy.  This is combination chemotherapy.  Patients will receive usually four to six cycles of that chemotherapy and following that chemotherapy that’s really it as far as the HS goes for many centres because there is no standard of care in the second line we are really guessing at what treatments to offer patients and this is really why we need major advances in terms of new drug based treatments for this cancer.

PATIENTTALK.ORG Can you explain what exactly is a clinical trial?  What the objectives of this study are and the risks involved?

PROF FENNELL In general a clinical trial is the formalised assessment of a new agent and the assessment is very often conducted particularly when wanting to establish how effective the drug is by randomising the drug compared to either the existing standard of care or if there isn’t one to a placebo which matches the experimental medication almost exactly.  So it is impossible for either the investigator or for the patient to know which is which.  It’s only when the analysis of the trial is done that one can work out, de-convolute the data and establish whether the drug was superior to nothing at all.  This is a very important mechanism for validating new drugs and what is considered to be the best standard of care but clinical trials are changing and particularly because our understanding of the cancer is changing dramatically we are now looking at the possibility or certain drugs and we have seen examples of this in lung cancer, examples of drugs that are so effective that a randomised trial simply isn’t necessary.  There is more than enough historical data out there to tell us that a new drug may be far superior to existing standards and therefore eastern US, this is not the case in Europe at the moment but within the US it was possible recently with lung cancer to approve a trial on a very, very small number of patients who were treated with very dramatic effects.

PATIENTTALK.ORG And what is the objective of this particular study?

PROF FENNELL Aside from chemotherapy, maybe four to six treatments of the standard chemotherapy, is the standard of care and when you stop the treatment the cancer comes back.  So the main purpose of this trial is to evaluate a new type of approach for treating Mesothelioma. It’s sort of a two hit approach­.  You have the chemotherapy first of all that gets initial control of the cancer and then you stop the cell that normally causes the cancer coming back, these are the cancer stem cells, you stop them from growing by using a specific stem cell targetting drug and one of the drugs that we are looking at here seems to have that property, that it can target stem cells. In the process of doing this, what you’re doing is targeting a minority of cells within the cancer with low toxicity. As a consequence this drug can be administered and administered until such time as the drug has to stop because the cancer’s grown again but the main objective is to try and see if the cancer can be suppressed for longer. Where this type of approach that’s been looked at in other cancer’s such as lung cancer the results have been very impressive. This has led to a change in practice where maintenance therapy this continuation second hit as it were has been shown to extend benefit for patients.

PATIENTTALK.ORG What would be the risks involved?

In this interview Prof Fennell tells us more about his current research into Mesothelioma.  You can read our previous article on the subject here http://patienttalk.org/calling-the-cancer-community-new-study-harnessing-ground-breaking-science-offers-hope-to-mesothelioma-patients/

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