Whoops!

Hi Phil, 

That sounds like a bit of a raw deal . Why do they hang you out to dry?  Surely if you are not getting stereo RT one of the other options should be offered. 

I am at a loss to understand their thinking. 

So what now?

Albondigas x 

hi phil. I am a gambler but not with my life. don't like trials with random chance. only way I would take part in one if was last resort.  take care on your choice. 

They need a control group to prove/disprove their theory.

I am not a fan.

Phil

Thanks Derek. I agree with you.

Phil

Hi

Am I correct in thinking that you believe the suggested trial could involve a placebo?

Regarding what are now very strict cancer trial protocols, the following is an extract from the cancer.gov website; Placebos are rarely used in cancer treatment clinical trials. They are used when there is no standard treatment. Or, they may be used in a clinical trial that compares standard treatment plus a placebo, with standard treatment plus a new treatment 

I was on a clinical trial for radiotherapy i.e low dose twice a day versus high dose once a day. I was randomly selected for the high dose group, which I later found out was the experimental group.  The point I am trying to make is that regardless of which group I could have been selected for, I still would have received the treatment I needed.  Although the surviving patients from the trial are still being monitored, the trial highlighted that the outcomes from each group were roughly the same, however the low dose twice a day was less brutal. The low dose twice a day has remained as the standard treatment route.

If you know the name of the proposed trial, you can obtain the full details via the Cancer Research UK website. This website also clearly explains how the protocols are utilised for each type of selection process, which I think will help to negate your concerns regarding potential risks of not receiving the treatment you need.

Kegsy x

Hi Kegsy

I saw the doctor today who is conducting the trial and she explained the situation. Everyone continues with their targeted therapy. 2 thirds receive stereotactic rt while 1 third get no other treatment.

My targeted therapy has stopped working on the primary tumour which has grown 1cm in 2 months max. The only hope I have, at least on this trial is to receive the rt. If I dont get it Ive signed my death warrant.

Phil 

Hi Phil

Sorry I think I mis-read your options post; I thought the SRT was a definite option.

What is the name of this trial?

Kegsy x

Hi Phil 

I know I don’t have all the infiormation of the trial, but why play Russian Roulette with peoples lives!! I can’t believe they could do that! Am I reading it wrong? I know trials are important. My mum was on a trial at the Marsden some years ago, and that treatment is now used regularly for ovarian cancer patients, but I don’t like this plocebo idea one little bit. 

Is this the only option? Or is this the only option for a trial? 

Xx

Hi Phil

Sorry I am back again as your situation has been racing around my brain all morning.

The SRT looks to be the HALT trial. My thought is why the SRT is only being offered to you as part of a trial when it is now a mainstream treatment. Why not ask if you can  continue with the Afatinib for the mets and also have the SRT for the primary without you formally being on the trial?

Kegsy x

Hi Kegsy

I came on here today to ask that very question. You must be a mind reader.

Thanks for the prompt. I will get onto oncologist now.

Many thanks Phil