Trial Drug

5% as opposed to what? No treatment? First, second or third line hormone treatment?
I've done precisely what we are told not to, and googled it. It's been refused approval in Europe. Pfizer developed the drug;, it's been sold twice after the Pfizer supported ExteNET trial stumbled to a halt in the US. They stopped recruiting at 2842 patients out of a planned 3800 and shortened the trial fron 3 yesrs to 2.
The side effects are extremely nasty--40% of the trial recipients reported severe diarrhoea and 21% discontinued the trial because of it.
The effectiveness, as far as I can see, is as low as 1.4% reduction in distant metastasis compared to the placebo.  
I can't see where the 5% figure comes from, but maybe the researchers have a different set of data from the ExteNET results, Ask to see it.
I'd also be asking questions about who's funding the trial, a lot of money has been spent on the drug and it sounds like a dud. It's hugely expensive ( @$10000 US per month), the fact you might get it for free wouldn't convince me to take it having read the publically available data. More information required.  Marg

@Zoffiel
A well researched and thought out answer summarising information available on "google". 

My Daddy is a pharmacist and basically sent me an email the same as yours @Zoffiel. Grade 3 diarrhoea which basically puts you in hospital plus the chance of kidney failure!! No thanks! 

 :o 

"1.4% reduction in distant metastasis compared to the placebo"
"Grade 3 diarrhoea which basically puts you in hospital plus the chance of kidney failure!!"

I'm deeply disturbed by some of the trials and treatment options offered. The potential benefit in some cases is small, yet probable severe reduction in quality of life is high. Someone, somewhere, some other humans, have decided.. "yep, happy with this product, lets trial it on other humans"... then an ethics committee has said "yep, happy with this probably small benefit, but too bad about the side effects.. lets approve the trial"...  :'( 

Highest respect to those who battle through terrible side effects of trials and marginally effective drugs. But, surely there has to be a better way? If also find it sad that those who seek alternative therapies - like traditional chinese medicine practitioners - can sometimes not find a lot of support, or worse from the western medical system.

I wonder if some of the money put into cancer research is looking into translating research conducted by others? Apparently not a lot of Chinese research into cancer is translated. If only these companies (or governments) would put their efforts into trials for natural products, something that works in harmony to bring the body back to balance. The world needs to come together and find a new way of making the medical world work better. Better patient outcomes before patents and profits. 

Best wishes to everyone with whatever treatment journey they choose. xx

Doesn't sound good.

Hi @lgray3911 , my oncologist and I gave the Neratinib a go in early October. I lasted a week on it, I went from being well, healthy and happy to feeling like crap after only 4 days on the drug. I was nauseated, couldn't eat was going to the bathroom up to 8 times a day and generally felt unwell. Chemo was a breeze compared to how this drug made me feel. Not only did I have to take 6 tablets each day I also had to take gastro stop meds 2 tabs 3 times a day and then there was a weekly blood test to monitor if the drug was damaging my liver and I was also back seeing my Oncologist weekly. I basically went from feeling like a non cancer patient and having some semblance of normality back to my life after 15 months of treatment to feeling like I was back on the treatment mouse wheel. I know like me you coped relatively well with your treatment and were fairly lucky with the side effects but for 5% this drug was definitely not worth the grief for me. I was still unwell for another 2 weeks after I stopped taking the drug, even breaking out in a rash. My oncologist said it was worth a try but was just an added insurance, she is happy with the treatment I have already had. If I had tolerated the drug great, but it wasn't a necessary part of my treatment. I appreciate that my Oncologist was able to get the normally 2k / month for me for free as throwing that sort of money down the drain ( literally ) to feel that bad would've really given me the shits! 

Thanks @Kat09 that definitely confirms my decision! 

You definitely have Laura, our quality of life is way more important than a minimal statistic x