Monthly Archives: July 2011

Back to ordinary life

Definitely a return to earth today, just about got to grips with the scan results, put together a list of more questions for Tuesday, bit down on a biscuit and chipped my front tooth.

If feels like a huge gap – actually just about visible but slept really badly with lots of dreams about my teeth falling out.

Then coming back from theatre today, around 4.30pm, minding my own business pulling away from lights , and a coach nudged my rear wheel arch, small dent on front bumper of coach , large dent on my rear wheel arch. Really shocked me, the coach driver immediately says I have pulled across him, but was just following car ahead on a straight road. Anyway no doubt all will become clear, no injuries, car drivable and in the scale of everything else, pretty minor. In fact gave us a totally new topic of conversation all evening.

Will get to test out the claims process of my new insurance company- only just taken out my own policy as have been a company car driver for 20 years. So steep learning cliff for me.

Slightly concerned if bad luck runs in three as to what will be happening next.

Being really careful and avoiding all ladders, black cats and sole magpies.

Good news at Bart’s

After the longest morning of my life ( even worse than waiting for my A Level results), we got the results of the PET-CT scan. Overall it was good news, there is no indication the meso is growing , there is some trace on the PET , but they think it is linked to inflammation from the surgery , which can apparently show up for years.

No sign of it anywhere else in the body either, the only negs were, there is still a very small pleural effusion , which has remained since the surgery , no nasties in it apparently and doesn’t impact on his breathing. The unexplained bit is still the pain across the top of his stomach and down his right side, the oncologist didn’t have any explanation for this, so we will be checking this bit out with the surgeon  next Wednesday.

We have a new CT scan booked for two months time at the end of September, so hopefully am going to get used to waiting for these tests.

Strangely felt very unreal, think we were both so psyched up for bad news, we didn’t believe the scan interpretation , have driven home with us both in a slight state of shock. Hopefully come Wednesday , if the surgeon says the same and can explain the cause of the pain , we can both relax a little and enjoy the summer. Big emphasis on him continuing to exercise as much as possible, so I can see the bicycles out again this weekend.

 

 

All set for Friday

After great work by the imaging people at St Thomas’s and Barts, just had confirmation scans have been uploaded at Barts in time for our Friday appointment- so will definitely get the results this week. Could be a very good weekend- or not!

Both of us are getting very twitchy now, wondering what to do tomorrow to take our minds off things. Thanks for everyone’s kind words and thoughts. In some ways this is as bad as waiting for the initial biopsy, feels as though he has tried so hard these last few months and been so brave , surely some good must have come from it and we will get some more good times together ahead.

New staging discussions and a $2.5 million mesothelioma compensation payment

News this week about possible new staging for meso, the Aurora, Colorado-based International Association for the Study of Lung Cancer (IASLC), in collaboration with the International Mesothelioma Interest Group (IMIG), has begun a project to study and improve the current staging system of pleural mesothelioma.

The current pleural mesothelioma staging system was developed by IMIG in 1995 and is based on the relationship between tumor size, lymph node and metastasis (TNM). However, experts believe that improvements in mesothelioma diagnosis and treatment call for revisions to be made to the staging system. Additionally, the IASLC believes that some of the tumor descriptors are currently difficult to apply to non-surgically managed patients. Additionally, the organization says that the lymph node aspect of the staging is nearly identical to non-small cell lung cancer, despite the fact that there are big differences between the two cancers.

The Prospective Staging Project in Malignant Pleural Mesothelioma was formed at a joint meeting of the IASLC-ISC Mesothelioma Domain and Advisory Committee in September 2010 in Kyoto, Japan. In order to modify the system, detailed collection and analysis of mesothelioma patient data is necessary, and researchers will have “to identify and validate additional descriptors for possible inclusion in future revisions to the TNM classification.”

At the moment, it seems to be easy to be written off when you have a meso diagnosis, particularly if it is beyond stage 3. Not sure what these possible changes may mean, but anything that stops this instant write off by most of the medical profession has to help.

Another claim settled this week in America, over yet another asbestos source,James Ginter began working as a laboratory chemist at Durez Plastics, manufacturer of industrial resins and phenolic molding compounds in North Tonawanda, New York, in 1979. During his time there, Ginter worked with a FAST (Friction Assessment Screening Test) Machine manufactured by the Ford Motor Company, the use of which required that he file and grind experimental asbestos-containing friction products used as vehicle brakes.

By grinding asbestos-containing materials, Ginter was exposed to a dust containing carcinogenic asbestos fibers during testing. Although Ford was entirely aware of the harmful effects of asbestos at the time and even knew that employees were suffering from asbestos cancer, Ford continued manufacturing the machine without providing any warnings.

Ginter was diagnosed with malignant mesothelioma in March 2010. He later filed a lawsuit against Ford for causing the cancer that will ultimately claim his life. The Buffalo jury delivered a verdict in favor of Ginter in the amount of $2.5 million dollars, assigning 15% of the responsibility for damages to Ford. The remaining percentage of responsibility for damages was assigned to other entities, including defendants, who settled before going to trial.

An afternoon at St Thomas’s

Westminster Bridge.

Image via Wikipedia

The day of the PET-CT scan and a trip into central London. Still seems strange not to be working, not allowed anything to eat after 8.45 am , even though appointment not until 2.45 pm, rashly agreed to join in with him, by 12.00 was dreaming of a bacon and egg sandwich.

Went for a wander along the South Bank first , great views of Westminster but serious number of tourists , with an even larger number of cameras, impressed by the number of ice cream vans stopping on Westminster Bridge , ignoring the red lines.

First time at St Thomas’s, slightly surreal experience of walking into reception amidst M & S, WH Smith and cafe’s , felt closer to Gatwick than a hospital.

Found the PET center, as usual with all the radioactive stuff, down in the depths. First off met the radiographer , who was very pleasant , obvious though they don’t get any patient notes as asked us lots of questions about the diagnosis etc. Still strange to say the terminal C word. Initial canula in the arm , then after about 30 mins had radioactive glucose injected, timed for when scanner would be available. After the glucose is injected, he had to lie down for around one and a half hours , whilst it was taken up by all the cells, they took him through to lie down and rest in an area with around 5 other people, his area had lots of toy animals painted on the wall .

Left him at this point as he needed to rest , so went and explored the best the hospital had to offer, great riverside restaurant with some of the best views of Houses of Parliament on the embankment. Looked like any other tourist cafe until you noticed the number of people in pyjamas and hospital gowns, at times had that fast forward film moment , where you are still and everyone else is speeded up .

The scan itself took around a further 30 mins, wasn’t painful and overall afternoon was pretty straightforward, even managed to go to the pub and then a local  restaurant afterwards.

Now we just have to wait for the results, got an email confirmation from Barts that they have asked for an urgent copy , hopefully in time for our Friday appointment.  Have to say at this moment, both Barts and Guys have been exceptional , not just in how quickly everything has been organised but in the personal emails keeping us informed. All of these people, all of this knowledge helping us, least we can do is our bit

 

An energetic day

The White Lodge, Richmond Park. This was built...

Image via Wikipedia

Waking up to glorious sunshine and feeling energetic , we cycled off to Richmond Park. Managed not only the journey there but also the smaller hill up past the White Lodge. He definitely couldn’t have done that a week ago, so his energy levels are returning. Carried on furthur round the park , where one of the lycra facists nearly knocked me off my bike- the 20 mph applies to cycles as well !! It’s not the Tour de France

After that we headed off to Barnes , along one of the London cycle routes, past some seriously  big houses and then along a street where all the houses had stone lions on their gate posts and chimneys , highly surreal.

Got down to the Thames between Putney and Hammersmith bridges , so set off to Hammersmith, along up to Kew and then back along the other side. Overall, a good 20 miles , so feeling very virtous we stopped off at one of the local parks and had a picnic from Waitrose.

Today the melancholy has been banished , what will be , will be etc etc.

Got home with both of us pooped, so now enjoying the sunshine in the garden, could get used to this not working idea!!

A thoughtful day

In some ways a good day, but the elephant in the room has been looming large, thoughts are also with other meso warriors who have recently had bad news. There is a harsh cruelty to this illness.

Whilst overall things appear to be improving, taste buds coming back, nausea disappearing and general energy levels improving, it all feels so transient. Big debate today about whether it was worth him buying a new CD rack- earlier we recovered my dining room chairs and had spare material left over to recover them in the future , he wondered if he would still be here or if I would need to do them on my own.

Strange how the mind goes down one route, his dad, who is in his seventies bought a new suit this week ( he never wears a suit) so wondered if he had bought the suit for a specific reason.

The main worry is this constant pain across the top of his abdomen, there is this constant fear it is the cancer fighting back – it ‘s the proverbial bad penny constantly turning up in your thoughts.

Against this background we try for our own brand of normal, sitting in the garden with a glass or two, even managed to cook a roast dinner, my first ever, a friend of mine promised me one for years, I’ve given up waiting and cooked my own.

Also saw two tiny town mice in the garden, who ran past my cats whilst they were facing the other way – move over Tom & Jerry.

Mice , I see no mice

A lovely sunny , sad day.

Mesothelioma treatment – new developments

Actually saw something about meso on mainstream TV last night , when Meridian highlighted a new vaccine trial recruiting for participants . They are looking for 26 people to form part of the trial for Trovax that stimultates the imuune response. The item on Meridian highlighted the involvement of the Oxford company  supplying the vaccine. It was introuduced by Dr Andrew Lawson, who is one of the select group of meso survivors having been diagnosed 4 years ago. He was looking extremely healthy , having just completed a furthur degree.

The programme also featured Mavis , one of our other meso warriers, making a great cup of tea.

Always good to see this cancer getting more awareness and new research.

The Phase I/II study in mesothelioma , with Oxford BioMedica collaborating with a team of cancer immunologists led by Dr Zsuzsanna Tabi at Cardiff University and Dr Jason Lester, an oncologist at Velindre Cancer Centre in Cardiff, to evaluate TroVax® in a Phase I/II study in mesothelioma .  The study will be funded by the June Hancock Mesothelioma Research Fund and Oxford BioMedica will provide TroVax®.  The study aims to examine the effect of TroVax® in combination with first-line chemotherapy agents as a treatment against mesothelioma.

As well as the Cardiff based trial of trolux, there is another trial underway in Liverpool, looking into the effectiveness of the TeloVac jab vaccine. This new therapy uses “the body’s own defenses to fight cancer, stopping tumors in their tracks.” The researchers are testing the vaccine’s effects on pancreatic cancer. If it proves successful, the vaccine may be extended to the treatment of other aggressive and terminal cancers, such as mesothelioma.

The new vaccine enables the body’s immune system to kill an enzyme called telomerase, which makes cancer cells indestructible and allows the tumor to grow unchecked. Over 1,000 late stage pancreatic cancer sufferers are participating in the Liverpool trial.

Onwards and upwards in the meantime with the chemotherapy recovery. Weather is looking great today so am hopeful may be able to manage a gentle game of tennis.

The great scan debate

Having read at the weekend about people having to wait ages for a scan , rather like buses two have come along at once. In the blue corner ,  the long arranged CT scan due next Friday, in the red corner just had notification  today about a PET-CT scan booked for next Wednesday .

Positron emission tomography (PET) and computerized tomography (CT) are both state-of-the-art imaging tools that allow physicians to pinpoint the location of cancer within the body before making treatment recommendations. The highly sensitive PET scan images the biology of disorders at the molecular level, while the CT scan provides a detailed picture of the body’s internal anatomy. The PET/CT scan combines the strengths of these two well-established imaging modalities into a single scan.

A CT scan is able to detect and localize changes in the body structure or anatomy, such as the size, shape and exact location of an abnormal growth, a sizeable tumor or a musculoskeletal injury.

A PET scan is very different from an ultrasound, X-ray, MRI, or CT scan. A PET scan allows the physician to distinguish between living and dead tissue or between benign and malignant disorders.

When disease strikes, the biochemistry of your tissues and cells change. In cancer, for example, cells begin to grow at a much faster rate. In one continuous whole-body scan, PET/CT captures images of changes in the body’s metabolism caused by actively growing cancer cells and provides a detailed picture of the body’s internal anatomy that reveals the size, shape and exact location of the abnormal cancerous growths.

The PET/CT scan begins with injection of a glucose-based radiopharmaceutical which travels through the body, eventually collecting in the organs and tissues targeted for examination.

The patient lies flat on a table that moves incrementally through the PET/CT scanner. The CT portion of the exam sends X-rays through the body which are then measured by detectors in the CT scanner.

The PET scanner has cameras that detect the gamma rays emitted from the patient, and turns those into electrical signals. These are processed by a computer to generate the images. The table moves slowly through the scanner and many sets of PET and CT images are produced.

The CT and PET images are assembled by the computer into a 3-D image of the patient’s body. If an area is cancerous, the signals will be stronger there than in surrounding tissue, since more of the radiopharmaceutical will be absorbed in those areas.

All sounds very exciting – but either way really we just want a good result . He is getting concerned about the level of pain across the top of his stomach and is now having sleepless nights imaging the tumour traveling through his body . I alternate between impersonating an ostrich and pretending no scans are due at all , whatever their alphabetical acronym, and thinking any knowledge is better than these dark imaginings.

Looks as though August 3rd is our new D-day

Chemotherapy recovery – the trend continues

Think it is time to officially call it a trend now, still no real taste buds and horrible taste in the mouth continues, but despite still being very tired, there is a definite upturn in energy .

As planned took car in for an MOT yesterday , dropped it off around 9.30 am and were told to come back around 2.00 pm. So we headed off to Newlands Corner, where there was a signed walk of around 3 miles. The first part was relatively straight forward, past the chalk quarry where Agatha Christie’s car was found during her mysterious disappearance in the 1920′s, then through some fields before turning along a fork to the Silent Pool.  This is fed by natural springs and is crystal clear and quite eerie, with various myths and legends attached to it.

We walked round the pool, then headed up the path – when I say UP the path , I mean UP , at around 40% for around 1/4 mile until we reached the North Downs  way. Puffing and panting at the back, my new definition of being unfit is wanting to stop for a rest before a man recovering from lung surgery and chemotherapy. Certainly got the heart racing and the lungs expanded.

We then had a fairly straightforward walk of around a mile back to the car , at least I’d deserved the lunch at a local pub , the Drummond in Albury. Great food and one of our best days out for some time. A good day to have given up work .

Shortly after we picked up the car and drove home through torrential rain . He was even able to cook dinner, though headed off to bed at 9.30pm, when he was asleep within about 5 minutes.

Paid for it a bit today , as pretty sore but overall a major improvement.  Here’s hoping the next few days continue on an upward trend, better weather forecast for the weekend. Continue to walk carefully around the elephant in the room known as scan.