Living With Mesothelioma -My Diary- We are in the middle of a horrible Storm. But it is Valentines Day


Happy Valentines day and boy are we having a stormy one. The wind is really hitting us and as we are a Parkhome It makes me nervous.

I keep thinking that there are homes that have stood on this  site from 1 -40 years and they have been through winds before, but this is a disastrous year so far.

The roof of a Tescos has gone near Plymouth and I bet there is so much damage everywhere. They do say all this might end by next weekend but we have to survive that long.

We did go out as I had to  go to the Nurse and she cleaned my leg for me. She said it is all very healthy –I didnt think so the fluid is very yellow but then the leg is draining.

It hurts a very nervy pain as she cleans it and puts a new plastic skin on.

It has calmed down now and feels comfortable again.

I went shopping at the Local Co-op for vegetables for my juicing and chickens to cook for the dog. Then on the news they are saying our vegetables could be  contaminated from the flood water. I think our local ones will be ok as our fields haven’t got any  river water in them.

There is a lot of research going on –

Asbestos use is now banned in the UK, but many buildings still contain it. Some asbestos is still in the air in certain workplaces, and everyone is exposed to small amounts in the outside air. The TIPS study aims to find out if people in the UK are still being exposed to asbestos. It is looking for fibres of asbestos in lung tissue samples from people who have had surgery for a collapsed lung (pneumothorax).

The MALCS trial is looking at the occupations of men and women in the UK and the development of mesothelioma and lung cancer. A lot of the research into mesothelioma is based on finding out exactly how asbestos affects the normal cells of the lining of the chest and abdominal cavities. If we can have a better understanding of how asbestos fibres cause cancer and how exposure to this chemical affects us, then we may be able to help prevent mesothelioma.

Finding a tumour marker for mesothelioma

Mesothelioma can be very difficult to diagnose. This is because many different types of cells can develop into a mesothelioma tumour. Mesothelioma tumour cells are very similar to some types oflung cancer cells. Sometimes it can be very difficult for a pathologist to decide whether or not the cancerous cells are mesothelioma cells, lung cancer cells or even sarcoma cells.

To help with diagnosis, scientists are trying to find out whether particular chemicals are given off by mesothelioma cells that can be found in the blood and picked up in a blood test. These chemicals are called tumour markers. If a definite tumour marker could be discovered for mesothelioma this would help doctors to diagnose this disease more easily. Markers can also be helpful in monitoring how well treatment is working.

Serum mesothelin related protein (SMRP) and osteopontin are new markers that are being researched. Osteopontin levels are raised in many patients with mesothelioma. SMRP levels are raised in up to 71% of patients with mesothelioma. But SMRP is also raised in ovarian cancer. So, SMRP can be useful in finding peritoneal mesothelioma and ovarian cancer, but it does not help to distinguish between them.

Useful tumour markers for diagnosing and monitoring mesothelioma in the abdomen are CA 125 and CA 15-3. Research is looking at how helpful these may be.

At present, all these markers are still being researched and are not routinely available to patients. However, there is potential for combining them to improve their effectiveness.


There is some evidence that your genetic make up could affect your risk of mesothelioma. As well as asbestos, exposure to a mineral called erionite is a risk factor. Researchers in Turkey found that in some families exposed to this mineral, everyone developed mesothelioma, and in others, no one developed it. They think that the families affected must have a gene that increases their risk. This could explain why some people who are exposed to asbestos do not develop mesothelioma, while others do.

We need a lot more research to be done before we will know if there are specific gene changes that can increase your risk of mesothelioma. It will be some years after this has been completed before there will be any chance of testing for such a gene.

Understanding the changes in the genes of the mesothelioma cells helps in developing treatments. Researchers are finding out more about these changes.  The aim of this research is to understand more about how mesothelioma develops and how the changes in the genes of the cancer cells affects how well different treatments work. They hope that this will help to guide treatment in the future.

It has been a major challenge for doctors to find chemotherapy drugs that work well in treating mesothelioma. Many trials have been done. The most commonly used combination of chemotherapy drugs for mesothelioma in the chest is currently pemetrexed and cisplatin. Sometimes pemetrexed is combined with carboplatin. Other drugs being looked at in trials include

A trial called MS-01 compared the following treatments

  • Active symptom control (ASC)
  • ASC and vinorelbine
  • ASC, mitomycin, vinblastine and cisplatin (MVP)

The trial found that the combination chemotherapy MVP is no better than active symptom control but that vinorelbine on its own may control symptoms better and could possibly help people to live longer. More research is needed to be sure. Another trial looked at irinotecan, cisplatin and mitomycin (IPM). The results were encouraging, but more research is needed.

Onconase (ranpirnase) is an experimental chemotherapy drug, made from leopard frog eggs. It is not available in the UK. We have included it here because you may come across information about it on the web. A phase 3 clinical trial has been going on in the USA and Germany comparing Onconase and doxorubicin with doxorubicin alone for people with mesothelioma. The results seem to show that adding onconase to doxorubicin helped some people to live longer. Studies may now also look at combining onconase with other treatments.

Cisplatin and pemetrexed is the most common combination of chemotherapy given into a vein forabdominal mesothelioma but trials are testing the following drugs – irinotecancyclophosphamide,doxorubicindacarbazine and gemcitabine. Doctors are also using chemotherapy into the abdomen after surgery to try to control abdominal mesothelioma. There is detailed information about this on ourchemotherapy for mesothelioma page.

Topotecan and irinotecan have not worked well at controlling mesothelioma when given by themselves. But in combination with other drugs, there have been some good results. There is information about the side effects of all the drugs mentioned above in the cancer drugs section.


In pleural mesothelioma, fluid can collect inside the chest. This makes it more difficult for your lung to expand and so it is harder to breathe. This is called a pleural effusion. It is usual to treat the pleural effusion by draining off the fluid and ‘sticking’ the pleura together. Doctors do this by putting in some sort of irritant, usually BCG vaccine, sterile talc or chemotherapy. This is called pleurodesis. TheMeso VATS trial is trying to find out whether pleurodesis or removing the pleura (a pleurectomy) is better at stopping the fluid building up again.

The TIME3 trial is looking at using a drug called urokinase to help drain fluid from around the lung to make breathing easier. Sometimes there is more than 1 pocket of fluid between the lung and chest wall. This makes it difficult to drain all the fluid away. Urokinase may help to break down the pockets. The aim of the trial is to see if urokinase can help control and improve shortness of breath caused by pleural effusion and improve the success rate of pleurodesis.


Advances have been made in surgery for mesothelioma over the past few years. Not many people with mesothelioma are fit enough to get through a very large operation. But research has shown that some people can live longer after surgery to remove the lung and pleura on the affected side (extrapleural pneumonectomy), followed by chemotherapy or radiotherapy. Research is continuing to look into this intensive treatment because there is a risk of dying during such major surgery.

The MARS trial looked at the benefits and risks of extrapleural pneumonectomy (EPP) for people with mesothelioma who had had chemotherapy. Results from some studies in the USA suggest that giving a course of radiotherapy after the EPP helps to keep the disease under control for even longer. Some patients in the MARS trial had an EPP operation combined with radical radiotherapy. Others had other treatments, such as radiotherapy, chemotherapy, or less major surgery. The trial found that for most people EPP did not help them to live longer. Many people also had poorer quality of life after this type of surgery. You can find results of the MARS trial on our clinical trials database.


Some people with mesothelioma have radiotherapy to the area where they have had tissue samples taken (biopsies) through the skin of the chest or had fluid drained from the chest. This aims to stop mesothelioma cells growing in scar tissue. Doctors do this as soon after the procedure as possible. But some recent studies have shown that this may not reduce the chances of mesothelioma spreading to the chest wall.

The SMART trial is looking at the best time to give radiotherapy to prevent mesothelioma spreading after a procedure to the chest wall. The doctors are also looking at the side effects of giving radiotherapy soon after a procedure and how it affects quality of life.

Researchers are developing a new method of radiotherapy called Intensity Modulated Radiotherapy, or IMRT for short. IMRT allows the radiotherapy beams to be shaped more accurately and so may avoid more of the surrounding normal tissue. So, you may have fewer side effects. Researchers in America are looking into how well this works for mesothelioma after surgery to remove the pleura but it will be some time before the results will be available.

Biological therapy

Biological therapies use substances made naturally by the body to fight cancer. Some work by stopping tumours from being able to grow blood vessels. Others work by blocking chemical signals that tell cancer cells to grow. Some types directly damage cancer cells. Various biological therapy drugs have been tried for mesothelioma, including

Unfortunately, these trials have not shown much benefit for patients. But further trials are planned to see whether using biological therapy in different ways including using two together may help them to work better.

A new drug called Arenegyr (NGR-hTNF) has been tested in people who have already had chemotherapy for mesothelioma. In early trials the drug seemed to control the mesothelioma for a few months and increase survival rates. This drug will now be tested in phase 3 trials to see how well it works.

Bortezomib (Velcade) is being used in trials on its own and in combination with cisplatin. AndCetuximab is being looked at in a phase 2 trial in combination with pemetrexed and cisplatin.

The COMMAND trial is looking at a new drug called defactinib to treat pleural mesothelioma. The researchers are comparing defactinib with a dummy drug (placebo), and to see what effect it has on quality of life.

In the USA they are looking at the biological therapy cediranib in combination with cisplatin and pemetrexed. An early phase 1 trial looked promising so more trials will follow.

Gene therapy is a type of biological therapy. By studying how changes in genes make normal cells become cancerous, scientists aim to eventually develop gene therapy, where damaged genes in the cancer cells can be replaced with normal ones. One type of gene therapy research for mesothelioma involves a virus that has been modified in the laboratory. The virus is injected into the pleural space in your chest, where mesothelioma develops. The idea is that the virus infects the mesothelioma cells with a gene. The gene makes the cancer sensitive to a specific drug that will kill the mesothelioma cells. Research is focusing on how to get the virus into the cancer cells reliably. It will be a while before we will be able to see whether this will develop into a useful treatment. There are currently no mesothelioma gene therapy trials open and recruiting patients in the UK.

Researchers are also looking into developing a vaccination to treat mesothelioma. There are cells in your blood called dendritic cells. Their job is to help other cells in the immune system to recognise cells that are foreign to the body (such as bacteria and viruses). By altering the genes inside some of your dendritic cells, the researchers hope to make immune system cells called T cells recognise mesothelioma cells as foreign. To make the vaccine, the researchers take some dendritic cells from a sample of your blood. They grow more of these cells in the laboratory and then alter the genes inside them (gene therapy) so that they can make proteins usually made by mesothelioma cells. They then inject these changed dendritic cells back into your skin as a vaccine. The researchers hope that the dendritic cells will use their new proteins to help T cells recognise mesothelioma cells and kill them.  There are trials going on in Europe and America. There are no trials in the UK at the moment.

The SKOPOS trial is looking at a different type of cancer vaccine, called TroVax, alongside chemotherapy for pleural mesothelioma. Many mesothelioma cells carry a protein called 5T4. In this trial, researchers want to find out if TroVax helps the immune system to recognise 5T4 and attack the mesothelioma cells that carry this protein.

There is more about biological therapies in our cancer treatments section.

Photodynamic Therapy (PDT)

PDT is a relatively new treatment that is used for a few types of cancers. A drug called a photosensitising agent is injected into the bloodstream and absorbed by the body’s cells. It is absorbed more by cancer cells than normal cells. The drug makes cells sensitive to light. When the area to be treated is exposed to laser light, the cells are killed.

PDT has to be combined with an operation to treat mesothelioma. This has been tried for early stage mesothelioma. The photosensitising drug is injected into your bloodstream a few days before surgery. During surgery, the surgeon then shines the laser light directly onto the pleura.

PDT has been shown to be a safe type of treatment with other types of cancer. But in phase 1 andphase 2 clinical trials for mesothelioma, there were some major complications on a few occasions and so doctors have not widely accepted this treatment. It is particularly likely to be risky when used with major surgery and this combination of treatments is not available in the UK. There are no claims that this treatment will cure anyone with mesothelioma. It is very experimental. We have included it here because it is something you may have read or heard about.

Pain control

Doctors often use radiotherapy to help control pain in people with pleural mesothelioma. But it doesn’t always work very well and so doctors want to find out more. The SYSTEMS study is looking at how helpful radiotherapy is for this group of patients and to see if it helps other symptoms such as breathlessness.

So all in all there is a lot going on
We must get behind Lord Saatchi he must win his new Bill

Telegraph readers are urged to seize a ‘once in a lifetime’ opportunity to change how medicine is practised in British hospitals

lord saat

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s