Living With Mesothelioma -My Diary- The IMIG SA Conference begins next week -Jim is on his way to the Royal Marsden and Ray is taken off the Tremelimumab Trial-The IMIG SA Conference begins next week


Yesterday was a very slow day -well thats how I felt. It has been so busy with my support group off line and helping people to find a trial or a Hospital for treatment. I cant believe this is the cas. The sooner they get a central Database for trials and stop making it so hard for the Patient the better.

There are not a lot of trial for Mesothelioma so we have many searching for so few.

The great news yesterday was that Jim Homersham has been invited to the Royal Marsden  to talk about treatment.

Carol his wife said yesterday on our carers group –Fantastic news !! We have just heard from our hospital that Professor de Bono at the Royal Marsden will be happy to see Jim with a view to going on a trial. Hooray ! Just waiting for the date. I was so pleased I cheered.

Published on Sep 21, 2013

 playing Ain’t Nobody’s Business in the barn Barley Mow West Horsley 1997
Recorded by Nick Frost.
Vocals JJ Fairs

Jm Heads the Blues band Dr JJ’s Blues Band.

I wish him all the luck and hope we do meet up together.

Another Warrior Ray has had to come off a trial –Amanda says

I am now totally confused at how drug trials work. Having wondered for two months if he is on the drug or placebo , with absolutely no side effects at all, three days ago he notices a small raised area of skin at the top of his bottom, which may be a slight rash.

Not wanting to get carried away as just as possible it is a reaction to washing powder, he mentions it at the usual check up two days ahead of the dose. Note made in his records but nothing else mentioned.

All proceeding as usual with the waiting while drug made up etc today, when just as it is due to be administered can he go and see the doctor . Sees new doctor not connected with trial who looks at possible rash, dashes off and comes back to say – no dose possible, will put it off for a month.

CT scan will therefore be done after 2 not 3 doses , which jeopardises chance of remaining on trial.

Have I totally missed the point on this – since when does a minor, possible side effect, stop the infusion, of a drug they believe may halt a terminal cancer.

Has anyone else had a dose stopped for this reason – I have no idea how this makes any sense. We have a duty of care to patients we kept being told as not a licensed drug !!! So shame about not administering something that might slow down the cancer but at least you won’t have a pimply bottom!!!

I am so totally gob smacked by this , I can’t even think of a sensible question because the whole thing sounds like some Kafka nightmare. i remember reading the Saatchi bill exponents saying drug trial protocols made no sense for terminally ill diseases but I didn’t expect to come across it quite so soon.

Plus if you put a trial on pause , the minute you get the slightest hint of a side effect, surely that makes the trial less effective.

Any other experiences welcome

http://ajandray.wordpress.com/

I have only had a trial stopped because it wasnt working and my Mr Nasty kept growing. I would think that if a rash was observed then that was a sign that something was not right and I can see why they stopped it. Poor ray it is a very worrying time.

On googling The most common treatment-related adverse events in the tremelimumab arm included diarrhea, pruritus and rash.

dragon fly2

 

 

 

 

 

 

 

 

 

Good news as more money is being raised for Mesothelioma Research The National Institute for Health Research (NIHR) welcomes proposals for clinical and applied health research into mesothelioma. NIHR operates a number of research funding schemes and would like to receive high quality proposals on any aspect of mesothelioma, its prevention, earlier diagnosis, treatment or care (including palliative care) – where there are likely to be benefits for patients or their families, within 5 years of the end of the research.

http://www.themedcalls.nihr.ac.uk/mesothelioma

Every little bit is welcomed.

http://www.standuptocancer.org.uk/?gclid=CKeWvfTetcECFQjItAodXzcAwg

Last night Stand up for Cancer raised almost £15 million and maybe more by today as the money rolls in. It did a little rowdy at times and I felt uncomfortable with the comedy. Im ashamed to say I did turn it off.

I think more money would have been raised if it was done by the BBC.

But it has raised a good figure so thats what matters. Iwish the mentioned some of the rarer cancers like our Mesothelioma. The popular cancers raise the money but if Asbestos had been mentioned I would have been happier as would the Mesowarriors.

http://imig.org/archives/1841

A very interesting artical to read about Mesothelioma

Dr. Joseph R. Testa, PhD and colleagues, recently found that mice were more likely to develop the deadly form of cancer associated with asbestos exposure – known as mesothelioma – if they carried a mutation in a gene known as BAP1, which affects the expression of many other genes.  However, when it comes to mesothelioma, exposure to asbestos carries more weight than genetics – even mice that did not carry BAP1 mutations developed tumors after being exposed to asbestos, while none of the unexposed mice with BAP1 mutations showed signs of mesotheliomas by the end of the study.

“To get mesothelioma, having a BAP1 mutation doesn’t appear to be enough,” says Dr. Testa.

ADAO IMig

 

The IMIG are having a huge conference in South Africa where so many of my friends in the Meso world are heading.

http://imig2014.org/

Mig cordially looks forward to welcoming you to Cape Town, South Africa from 21 – 24 October 2014 for the 12th International Mesothelioma Interest Group Conference – the world’s premier medical congress on mesothelioma. Our theme is the ongoing quest for cure. It will be hosted by the South African Mesothelioma Interest Group (SAMIG), and held at the Cape Town International Conference Centre (CTICC) which is optimally situated in the city bowl, with the Table Mountain amphitheatre as the backdrop and the spectacular Waterfront on its doorstep. Cape Town was rated the world’s best tourism destination in 2011 by TripAdvisor. We trust that we will attract many delegates and stimulate a memorable and meaningful meeting, with some superb after hour’s entertainment and relaxation, and of course the opportunity to experience a bit of Africa.

We expect to attract professionals from the following disciplines:

  • Medical Oncology, Radiation Oncology
  • Thoracic Surgery
  • Pulmonology
  • Radiology
  • Pathology
  • Epidemiology
  • Basic Laboratory Research
  • Oncology and Clinical Nurse Specialists
  • Social advocacy

 

See you in Cape Town with its wonderful spring-summery weather and glorious hours of sunshine!

Sincerely
Dr Jim te Water Naude (SAMig Chair)
Prof Anthony Linegar (SAMig Co-Chair)
Prof Steve Mutsaers (iMig Chair)

IMG_20140517_181721Rays Blog http://mesoandme.wordpress.com/2014/10/17/friday-105/

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