No scan tomorrow- all appointments cancelled

Set backs all round today, poor night sleep,aches and pains are worse and his chest feels very tight which is always worrying , although have been there before. Then get a call from the hospital to say there is a problem with the scanner, so all appointments cancelled.

At least they phoned to let us know, unlike with poor Tess who had to traipse up to the hospital before finding out. In some ways Ray says it’s a bit like being a kid and hearing from the dentist to say he can’t see you after all. On the other hand, it does tend to keep the stress levels a bit too high for comfort. Also means we will probably need to reschedule the results show on Friday and the surgical appointment the following week, as no point without the scan results.

They are phoning back tomorrow to let us know if it’s going to take a while to fix or just a short blip – so all appointments currently on hold and waiting for news.

Fighting mesothelioma with measles?

Researchers at the Mayo Clinic are recruiting mesothelioma patients to participate in a Phase I clinical trial of a treatment based on an altered version of the measles virus.. The proposed new drug being developed at the Mayo Clinic falls into an emerging category of treatment known as “virotherapy.”. It uses a version of the measles virus that has been engineered to carry toxic chemicals directly into cancer cells.

When the altered virus, known as MV-NIS, is injected into a mesothelioma patient, it carries radioactive iodine into infected mesothelioma cells, which can then be seen using CT imaging. If the iodine uptake is significant, researchers can inject more of the MV-NIS, carrying an even more lethal version of the radioactive iodine to help the virus destroy the mesothelioma tumor.

In preliminary studies on mice infected with mesothelioma, a single injection of the measles virus doubled the life span compared to those mice that didn’t receive the virus.  Some even appeared to be cured. This Phase I trial of the new virotherapy is designed to assess the safety and side effects of the treatment in humans and to establish dosing requirements. If MV-NIS proves to be safe, it may eventually be combined with chemotherapy drugs which suppress the immune system, giving the tumor-killing virus more time to work.

The current clinical trial is recruiting patients with all stages of mesothelioma, including those with recurrent disease. More information and participant eligibility requirements can be found at the National Cancer Institute Clinical Trials Website.

In celebration of Roger

Thoughts tonight are with another brave mesowarrier who has lost his fight with this terrible cancer. Bryan and Roger were together for over 18 years and Bryan has lovingly written about their brave fight since the diagnosis late last year.

Although we have never met, Bryan’s writing has brought to life the obvious love in their lives. The battle may have ended for Roger but I know the fight is ongoing now for Bryan.

The fun and humour that has shone out from their updates made me think of fireworks not candles.

A lazy weekend

Had a very lazy weekend, other than a couple of walks down the High Street to pick up some groceries, very little to report. No extra pains, although still a bit of coughing nothing like it was 6 weeks ago – 6 days to results of next scan, so we are trying very hard not to talk about it.

In fact we are getting better at totally avoiding the topic, we know it’s there because we don’t talk about any events beyond this week. This can be a bit tricky at work , when I become incapable about thinking or deciding about anything that might be planned after Friday – I tended to be a bit last minute anyway but can imagine it must be getting really annoying when other people are affected and can’t get on with their work until you make your decisions.

Watched the great tennis, felt exhausted just watching them all play at that level for over 5 hours , then wandered down to Sainsbury to try and use up some of my Nectar points – checked online and confirmed you just needed to swipe it at the till- luckily we checked at the information booth. Not that simple after all, first you have to register the card at your local store- and no you can’t just register it in one go , you have to visit the store  three times, spending a certain amount etc etc.

Back on line and ordered the vouchers instead.

A good Thursday

After a busy couple of days at work was really looking forward to the night out we had planned. Dinner at a restaurant in Waterloo, “The Fire Station”and then a trip to the Old Vic to see the play “Noises Off“. This was the first play I ever saw around 25 years ago, so it was a bit of trip down memory lane.

I remembered it as being really funny and we weren’t disappointed , totally laugh out loud evening. Ray thought it was right up there with best ever trip to the theatre and couldn’t remember the last time he had laughed so much – with the scan count down clock now starting to tick ever more loudly we need all the laughter we can get.

Scan on Tuesday , results on Friday , life on hold. Lots of things we are thinking of doing in the Spring but right now as usual thinking beyond the week feels very much like a hostage to fortune. So back to a split personality and the brain trying to ready itself for all possible bad news and the heart trying to think only of the positive.

At the moment though I am the one in the wars, as have slight black eye from being head butted in the nose by my CAT!!! Impressively inept he totally misjudged his jump across the sofa , I always wondered how those stories ever arose where people were injured whilst quietly reading a book on their own sofa – well now I know.

Here’s to a good weekend for all mesowarriers and their loved ones

Image by Darkroom Daze via Flickr

A thoughtful weekend

Overall not a bad weekend, although the pains have started to reoccur today, mainly round the area of the lowest ribs, plus the recurrence of the stitch and what feels like itching inside the lung. This always raises all sorts of horrible thoughts which we try not to dwell upon.

The scan is looming ever closer and however hard we both try it is starting to dominate all thinking. We start to build up plans for April and May , but resolve not to book anything until after the scan results , it’s almost as though it would be tempting fate – as if not looking forward to something too much means it is more likely to happen.

Apart from the increase in pain, he otherwise looks not too bad, in general he is getting more sleep, although finds it impossible to get up early, plus this last week he has had toothache, If it’s not one part of his body it’s another. The other thing you realise is how much extra paperwork there now is, even a simple trip to the dentist means lots more forms now that he answers yes to lots of questions on the pre medical questionnaire.

he also got sent through a questionnaire this week from someone doing a post grad thesis on what it’s like telling people you have cancer and how they respond. I know Ray hates the thought of pity or people being uncomfortable around him or treating him differently, which is what so many people do. I can see it with some of my family, they don’t know what to say or start treating him like an invalid. Some friends of ours though have been great, they basically treat him just the same as before, they don’t give him any quarter and he thrives in their company.

Sometimes you just want to be normal and people may be trying to be kind but treating you as an invalid doesn’t make you feel any better.

A thoughtful weekend

Overall not a bad weekend, although the pains have started to reoccur today, mainly round the area of the lowest ribs, plus the recurrence of the stitch and what feels like itching inside the lung. This always raises all sorts of horrible thoughts which we try not to dwell upon.

The scan is looming ever closer and however hard we both try it is starting to dominate all thinking. We start to build up plans for April and May , but resolve not to book anything until after the scan results , it’s almost as though it would be tempting fate – as if not looking forward to something too much means it is more likely to happen.

Apart from the increase in pain, he otherwise looks not too bad, in general he is getting more sleep, although finds it impossible to get up early, plus this last week he has had toothache, If it’s not one part of his body it’s another. The other thing you realise is how much extra paperwork there now is, even a simple trip to the dentist means lots more forms now that he answers yes to lots of questions on the pre medical questionnaire.

he also got sent through a questionnaire this week from someone doing a post grad thesis on what it’s like telling people you have cancer and how they respond. I know Ray hates the thought of pity or people being uncomfortable around him or treating him differently, which is what so many people do. I can see it with some of my family, they don’t know what to say or start treating him like an invalid. Some friends of ours though have been great, they basically treat him just the same as before, they don’t give him any quarter and he thrives in their company.

Sometimes you just want to be normal and people may be trying to be kind but treating you as an invalid doesn’t make you feel any better.

How the common cold might be able to help beat mesothelioma

Researchers at the University of Pennsylvania are fighting malignant mesothelioma with an unexpected tool – the cold virus.

The approach fits into a category of treatment known as immunotherapy, which aims to harness the body’s own immune system to find and attack cancer cells.  In the current study, Penn Medicine mesothelioma researchers, injected mesothelioma patients with a modified form of the adenovirus – a virus normally associated with the common cold. The virus had been altered to express high levels of an immune system stimulant called Interferon-a, a protein that can boost the body’s ability to fight off viral infection.

Nine mesothelioma patients with varying stages of the disease received injections of the modified virus directly into their chest cavities. Almost all of them began producing anti-tumor antibodies.  Although the four patients with the most advanced mesothelioma showed no signs of improvement, in the remaining five patients there was evidence of disease stability or even tumor regression. In one case that researchers described as “dramatic,” there was partial tumor regression at a site some distance away from the injection site. None of the patients experienced any major side effects from the treatment.

There seems to be more and more positive research being published about immunotherapy, which wasn’t even being considered 10 years ago. Here’s hoping for the good results to continue and feed through into new forms of treatment.

A trip to church

One year ago today I went into our local church to say thanks for Ray coming through surgery, straight after the service I caught the local tube into Guy’s hospital . He was still in a load of pain but had been just been transferred to the ward from the ICU.

So today we went back together, there were even a couple of the same hymns and I still have very clear memories of that day. If you had said then in one year you’ll be standing here together , with no current painkillers, I would have said thanks . Now of course you stand there asking for just a little more….

Weather beautiful again today, the sunshine makes such a difference. Cooked a roast gammon tonight with a honey and mustard glaze ( so impressed with the improvement in my cooking)
So we are sitting here throughly stuffed, the very picture of a modern couple as we are both on computers.

Just time for a nice glass of red wine before the last episode of Sherlock and a good end to an excellent day.

A frosty morning

A great two days, lovely weather , clear and frosty. We took the car out to Stockbridge yesterday, although still didn’t get to eat at Stokes, as was full , so we ended up at the Three Tuns instead. Had a lovely lunch and then a great trip back home, we checked out a couple of other places with potential for some weekends away during the Spring.

The garden had a nice stripy effect this morning as the sunshine cleared away the frost, whilst all the plants had a good covering of white that sparkled in the sunlight.

Large numbers of pheasants at the roadside, we saw some people stopping their cars to pick them up – pheasant for dinner I assume.

We celebrated our Friday with a couple of glasses of champagne when we got home.

Today I read that the asbestos awareness society in America has honored Steve McQueen , as one of the most high profile victims of mesothelioma, the award was collected in his memory by his widow . Always good to see an awareness of asbestos and its risks being raised throughout the world.

Related articles

• Actor Steve McQueen honored posthumously by asbestos disease advocacy group [The Pump Handle] (scienceblogs.com)