Wednesday, 9 November 2011

MARS Trial

By all accounts the MARS trial showed that surgery wasn't a winner.  I'm not surprised really, in all trials due to the way the patient is selected, not many become a success.  Why can't trials be done or handled in a different way.  I was reading the outcome in Mesothelioma UK, many might not have recovered enough from chemo to want to undergo surgery, infact it said that a third of the group selected for surgery didn't go ahead.  So that surely affects the figures.

What we need is a full database where patients (if they wish to) and specialists fill out info for all to see, this would be a much better gauge as to how long and what difficulties patients had. The usual trial way doesn't work and I don't believe ever really will. We still need new releases but give options to the parties not random selection.  If someone has no chance of remission and offers them self as a placebo they can't but could end up taking the drug and someone that has every chance could end up on the list that doesn't receive. 

If surgery is withdrawn what happens to patients like me that had no where else to go, yes my pain went up but I am still here to moan about it and lets face it we have to have something in life to moan about!  I know several who have had surgery and had no pain and are still here too.

Why put someone through a gruelling chemo before surgery?  if you are going to chop it out do that first, then maybe just follow up with tomotherapy.  Keeping the chemo on the back burners.  I don't know whether this would work better or not, but this is the stuff that doesn't happen in trials but in life in general.  If it was recorded country or worldwide.  We need something that states the growth of the tumours at the time of treatments, how many people have had almita and survived a good 2 years before remission was over, many have had surgery and lived a cancer free life for more than 2 years, how many choose not to have anything etc.  If a database was set up correctly it could be queried in such a way that you could find out the remission periods over counts much easier.  I know I am rambling but trials annoy the every essence of my soul. 

As for my own situation I am no wiser reading the report, there again it isn't written for joe bloggs is it, its to be deciphered by the specialists as that's why they went to college for.  The gist is that it is growing.  One thing I did notice is some are growing faster than others.  I am currently investigating the worth of getting 'My 3rd Boob' cut out. Hopefully, a referral will go this week to one of the best surgeons I know.  I am hoping that it can be removed without too much trouble.  Less cancer = longer life is my belief.  As for the right lung, once I receive a copy of this scan and it doesn't take 3 months to arrive I will send it off to London and see what they make of it. 

The problem with protocol is it stops people trying new things, there are rules and regulations.  It amazes me how we have managed to progress through medicine when so many boxes have to be crossed.  Why can't seeding be removed as the norm if the person is healthy enough for it.  The lumps get bigger, and I believe its because new cells grow but old cells don't die.  Therefore, its only tissue at the end of the day not some organ that we need to live with.  Whether this is the case with meso I am unsure, but again it must do something strange with our old cells.

I heard from Cher yesterday and was sorry to hear that she had such a terrible time after her first dose of chemo.  To spend the entire 21 days in pain and being unable to eat or drink is no fun and I am sure all our thoughts will be with her over the next 4 months. 

I have also been asked if there is a Meso Warrior group in Spain,  if you know of anyone out there can you please let me know so I can pass on the information.

Enough for now, work is calling not that I fancy going out into such a dark and dank day.

1 comment:

Amanda said...

HI Jan,
know what you mean about a central database, for all trial and info. It seems crazy that with such advances in information technology you can't even find out about all the trials easily.

Have decided to speak to my MP and start to see what can be done.