Living With Mesothelioma -My Diary- Busy Day with Surveys Trials and ADAO made a lovely Announcement today


Another lovely day of sun and warmth. Windows open to air out the  rooms just lovely.

I had to get ready for the clinic and go and have the leg dressed again.

It has healed lovely and not leaking fluid anymore.  The nurse called it :-

Lymphoedema is a chronic (long-term) condition that causes swelling in the body’s tissue. This can lead to pain and a loss of mobility.

Lymphoedema usually affects the arms or legs, although in some cases there may be swelling in the:

  • chest
  • head
  • genitals

Lymphoedema is caused by damage or disruption to the lymphatic system.

One function of the lymphatic system is to drain excess fluid from tissues. If the lymphatic system is disrupted or damaged, it can lose this ability and the excess fluid will cause the tissue to swell.

Read more about the symptoms of lymphoedema.

Types of lymphoedema

There are two main types of lymphoedema:

    • Primary lymphoedema – which develops at birth or shortly after puberty and is caused by faulty genes.
    • Secondary lymphoedema – caused by damage to the lymphatic system as a result of an infection, injury, trauma, or cancer.

Secondary lymphoedema often develops as a side effect of cancer treatment. Surgery is often necessary to remove lymph glands to prevent a cancer from spreading, this can damage the lymphatic system.

Radiotherapy, where controlled doses of high-energy radiation are used to destroy cancer cells, can also damage the lymphatic system.

Read more about the causes of lymphoedema.

Who is affected?

It is estimated that 1 in 10,000 people are affected by primary lymphoedema.

Secondary lymphoedema is a relatively common condition, affecting an estimated 100,000 people in the UK.

Secondary lymphoedema occurs more frequently in women, possibly because it can sometimes be a side effect ofbreast cancer treatment.

Cancer Research UK estimates than one in five women may have lymphoedema in their arm after they have had radiotherapy or lymph nodes removed to treat breast cancer.

If you are at risk of developing lymphoedema due to cancer treatment, you may be offered an assessment as part of your aftercare. Read more about how lymphoedema is diagnosed.

Treating lymphoedema

There is no cure for lymphoedema, but it is possible to control the symptoms using a combination of different techniques, such as massage and compression garments.

There are also things you can do to help prevent the condition getting worse. This includes taking care of your skin to avoid infection and having a healthy diet and lifestyle.

If you have received treatment for cancer, these measures may also help to prevent lymphoedema.

Read more about how lymphoedema is treated andpreventing lymphoedema.

Complications

People with lymphoedema are more vulnerable to infection. This is because infection-fighting white blood cells, called lymphocytes, which travel in the lymphatic system, are prevented from reaching the part of the body where they are needed.

A bacterial infection of the skin called cellulitis is one of the most commonly reported infections in people with lymphoedema.

Read more about complications of lymphoedema.

Anyway I came out of that happy that it was a clean wound now and only one more cleaning will do it.

We went shopping for fruit and veg as my new Juicer came and of coarse i have bought to much so have had to store careful.

I have made a lovely one with banana, apple, kiwi, grapes and coconut milk, very nice and the Bullet was so clean afterwards. Just a quick rinse it was done. I added my Cherry concentrate. in so tat was vitamins for the day.

Please sign a Petition http://www.alltrials.net/

It’s time all clinical trial results are reported.

Patients, researchers, pharmacists, doctors and regulators everywhere will benefit from publication of clinical trial results. Wherever you are in the world please sign the petition:

Thousands of clinical trials have not reported their results; some have not even been registered.

Information on what was done and what was found in these trials could be lost forever to doctors and researchers, leading to bad treatment decisions, missed opportunities for good medicine, and trials being repeated.

All trials past and present should be registered, and the full methods and the results reported.

We call on governments, regulators and research bodies to implement measures to achieve this.

http://www.foxnews.com/health/2014/02/18/researchers-grow-human-lungs-in-lab-for-first-time/

In a breakthrough that could one day revolutionize transplant medicine, researchers have successfully grown human lungs in a lab for the first time, Medical News Today reported.

Using portions of lungs from two deceased children, researchers from the University of Texas Medical Branch in Galveston created a scaffold-like structure by stripping one set of lungs down to just collagen and elastin – the main components in connective tissue.

The researchers then gathered cells from the other set of lungs and applied them to the scaffolding, before placing it in a chamber filled with nutritious liquid. Four weeks later, the team had a complete human lung – and they were able to successfully repeat the procedure using another set of lungs.

The researchers first developed this technique in 2010, and have since tested the method on rat lungs and pig lungs before testing it on human lungs.

“It’s taken us a year to prove to ourselves that we actually did a good job with it. You don’t run out immediately and tell the world you have something wonderful until you’ve proved it to ourselves that we really did something amazing,”  researcher Dr. Joan Nichols said.

Though the researchers are excited about their discovery, they said it could take a minimum of 12 years before the use of lab-generated lungs in human transplants becomes a reality.

Congratulations to Linda Reinstein and Asbestos Disease Awareness Organization for securing the Surgeon General as the keynote speaker for their 2014 Conference. Don’t forget to register for this event. Should be great!
The Asbestos Disease Awareness Organization is honored and privileged to announce Rear Admiral Boris Lushniak, Acting United States Surgeon General, as the keynote speaker for our 10th Annual Asbestos Awareness Conference to be held April 4-6 in Washington, DC. PRESS RELEASE:http://www.asbestosdiseaseawareness.org/archives/25614
Photo: The Asbestos Disease Awareness Organization is honored and privileged to announce Rear Admiral Boris Lushniak, Acting United States Surgeon General, as the keynote speaker for our 10th Annual Asbestos Awareness Conference to be held April 4-6 in Washington, DC. PRESS RELEASE: http://www.asbestosdiseaseawareness.org/archives/25614

Phase 2 of the FAK trial is Recruiting it looks promising I have made contact to see if I do suit the criteria.

This trial is looking at a drug called GSK2256098 for people who have a solid tumour that is not responding to other treatment. A solid tumour is any type of cancer, except for leukaemia or lymphoma.

Some types of cancer produce high levels of a protein called focal adhesion kinase or FAK. FAK plays a role in the way cancer grows and spreads. Blocking it may stop cancer spreading.

In this trial, researchers are looking at a drug called GSK2256098 which can block FAK. It is known as a FAK inhibitor.

The aims of this trial are to find out

  • The highest dose of GSK2256098 you can have safely
  • What the side effects are
  • How much of the drug gets into the bloodstream and how long your body takes to get rid of it
  • If there is something about your cancer that makes it more or less likely to respond to the dr

http://www.cancerresearchuk.org/cancer-help/trials/a-trial-of-gsk2256098-for-solid-tumours

Liz Darlinson has asked us to do this survey as it is about

Liz Dawson has asked to pass to Warriors  New survey launches to help identify mesothelioma treatment uncertainties
An important survey has launched today that will help to inform future research into mesothelioma diagnosis, treatments and care. The survey is now available atwww.psp.nihr.ac.uk/mesothelioma/survey, and will remain open for a few months to collect data from patients, carers and clinicians.
This is part of a project being carried out by aNational Institute for Health Research (NIHR)-funded ‘Priority Setting Partnership’ (PSP) recently set up by the James Lind Alliance (JLA).The survey gives patients, carers and family members affected by the disease an opportunity to identify and prioritise unanswered questions about mesothelioma. The results of the survey will be published later this year and willbe used to inform the ‘top ten’ priorities for clinical research, as determined by patients, carers and clinicians.
Mesothelioma is a rare and often fatal formof cancer with very poor survival rates. It is most commonly caused by breathing in asbestos dust, but symptoms sometimes don’t show up until decades after exposure. This makes treatment difficult becausethe disease is often well-advanced before it is diagnosed.According to the latest government figures, in 2011 there were 2,291 deaths in Great Britain caused by mesothelioma.
Professor Dame Sally C. Davies, Chief Medical Officer and Chief Scientific Adviser at the Department of Health, said:
“It is vital that we gather and listen to the views of as many people as possible so everyone knows the topics that are a priority for clinical research. Mesothelioma research has been identified as an important area and everyone needs to hear what patients, carers, families and healthcare professionals believe are the most important unanswered questions around the diagnosis, treatment and care of mesothelioma.”
Some of the ways that you can help make the project a success, are by:
completing our survey now at www.psp.nihr.ac.uk/mesothelioma/survey
passing on the information to encourage your family members, support networks, carers or colleagues to fill in the survey.
circulating copies of our mesothelioma postcardto relevant groups.

Ian Jarrold, Head of Research at the British Lung Foundation, said:
“We are very proud to be able to support the James Lind Alliance in setting up a Priority Setting Partnership for mesothelioma, this initiative shows that the condition is now firmly on the wider health agenda. The survey, which aims to capture unanswered questions in treating mesothelioma, will provide a very clear steer to research funders regarding what research projects need to be supported in order to make advancements in the treatment of this devastating cancer.”

Set up through the JLA and funded by the NIHR, thisJLA PSP is supported by The British Lung Foundation, Mesothelioma UK, The Mick Knighton Mesothelioma Research Fund, Asbestos Victims Support Groups Forum UK, The June Hancock Mesothelioma Research Fund, and Cumbria Asbestos-Related Disease Support.

Graham Sherlock-Brown, Patient Representative, said:
“It is essential that research money is put into finding ways to relieve the suffering caused by this aggressive disease. Progress in treatment is long overdue and mesothelioma victims deserve far better – very few survive past five years and mesothelioma will continue to claim victims as long as asbestos is present in the UK. That’s why I’m pleased to see the launch of this important survey, which gives patients and carers a much-needed voice.”
To help put mesothelioma research in the spotlight and to get involved, visitwww.psp.nihr.ac.uk/mesotheliomaor email jla@soton.ac.ukwith any questions.Videos about the PSP are available to watchat:www.psp.nihr.ac.uk/mesothelioma/videos.
-Ends –
For more information please contact:
Kelly Lockhart – Communications
National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre
Tel: 023 80597376 Email: k.lockhart@southampton.ac.uk
Notes to editors
The James Lind Alliance Priority Setting Partnership (JLA PSP) infrastructure is hosted by the National Institute for Health Research (NIHR) to provide the support and processes for Priority Setting Partnerships (PSPs). PSPs aim to help patients, carers and clinicians work together to agree which are the most important treatment uncertainties affecting their particular interest, in order to influence the prioritisation of future research in that area. For further information, visit the JLA website (www.jla.nihr.ac.uk).
The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government’s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world. For further information, visit the NIHR website (www.nihr.ac.uk).

Liz

Liz Darlison

Macmillan Consultant Nurse
Mesothelioma UK
University Hospitals of Leicester NHS Trust
The Glenfield Hospital
Groby Road
Leicester
LE3 9QP

It takes a bit of time but theis is the Survey that is need by the Warriors as  there are so many questions answer as nothing is uniform through the country. the treatment can be so different oop North to South I hope the do fill it in as there are so many Warriors that have been treated badly or haven’t even been offered the trials that are available.

Rays Blog http://mesoandme.wordpress.com/2014/02/18/tuesday-85/

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