Living with Mesothelioma -My Diary- Looking for Trials is a Minefield


Tankerton slopes (photo: Harold Wyld)

 

I have spent most of the day researching trials -we cancer patients have to search for our own as there aren’t many in the official Trials Gov.co

http://clinicaltrials.gov/ct2/show/NCT00513877?term=mesothelioma&recr=Recruiting&type=Intr&cntry1=EU%3AGB&rank=1

Linda Wride share this one with me that Steve was on and had 3 years of good time but he is now back into Treatment

I found the Royal Marsden Trials http://www.royalmarsden.nhs.uk/research/pages/clinical-trials.aspx

They have cancer trials going on

Clinical trials currently recruiting

But we have to have it pacifically for Mesothelioma

Then Linda sent me through the UK trails http://www.ukctg.nihr.ac.uk/search?query=keyword%3Amesothelioma+status%3Arecruiting&resultsfrom=1&resultsto=10&pagesize=10

Where I found the ADAMS trial which I wasnt suitable for http://www.ukctg.nihr.ac.uk/trialdetails/ISRCTN71601938

So I have been reading through and studying which can be used on 3 rd line Patient as my body has had so much treatment.

I had found this site this afternoon http://topdocumentaryfilms.com/burzynski-the-movie-cancer-is-serious-business/

and low and behold a Man asked if anyone knew of the documentary as it had been recommended to him so I was able to help share.

Burzynski is the story of a medical doctor and Ph.D biochemist named Dr. Stanislaw Burzynski who won the largest and possibly the most convoluted and intriguing legal battle against the Food an Drug Administration in American history.

His victorious battles with the United States government were centered on Dr. Burzynski’s belief in and commitment to his gene-targeted cancer medicines he discovered in the 1970′s called Antineoplastons, which have currently completed Phase II FDA-supervised clinical trials in 2009 and could begin the final phase of testing in 2011-barring the ability to raise the $25 million to fund the first one.

When Antineoplastons are approved, it will mark the first time in history a single scientist, not a pharmaceutical company, will hold the exclusive patent and distribution rights on a paradigm-shifting, life-saving medical breakthrough. Antineoplastons are responsible for curing some of the most incurable forms of terminal cancer. Various cancer survivors are presented in the film that chose his treatment instead of surgery, chemotherapy or radiation – with full disclosure of original medical records to support their diagnosis and recovery.

One form of cancer – diffuse, intrinsic, childhood brainstem glioma has never before been cured in any experimental clinical trial in the history of medicine. Antineoplastons hold the first cures in history – dozens of them. Burzynski takes the audience through the treacherous, yet victorious, 14-year journey both Dr. Burzynski and his patients have had to endure in order to obtain FDA-approved clinical trials of Antineoplastons.

However, what was revealed a few years after Dr. Burzynski won his freedom, helps to paint a more coherent picture regarding the true motivation of the U.S. government’s relentless prosecution of Stanislaw Burzysnki.

Why is it all such a fight -why cant we all share knowledge and work together, We patients watch and wait for the cure or at least good treatment, we havent got time to wait.

 

Im sorry its been very medical but thats my life  and has been for over 3 years now.

The sun has shone all day and we had a great walk as I needed to get out into the fresh air.

I sit in front of this computer to much but it is my lifeline to the outside world –it is full of so much knowledge and I seek it all out.

I spruced up my speech again but I will keep looking at it as I have not put in about trials and how hard we work at that.

So that’s another day flown by

Rays Blog http://mesoandme.wordpress.com/2012/10/09/tuesday-22/

Linda Wride writes a blog http://doingsomethingpositive.blogspot.co.uk/2012/10/pill-popping-cycle-1-day-2.html and here she describes all the medication we take when faced with Chemo.

It shocked me to see it recorded in such away as you just take what your given to the instructions your given.

It seems an age when I was on chemo as you have to forget it and just enjoy the 3 months of stable and pray you never have to go back on it, but of coarse you know you will.

I think Mesowarriors are the bravest people  I know-Bless them all. But also I honour the Carers as they bravely run around and take over running everything and being there when we need comforting, caring for and just listening.

 

 

 

 

http://www.kentcoast.org.uk/whitreculver.html

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