Liver cancer

A place for people affected by liver cancer to support one another, ask questions, and share their experiences.

Drug trials?

MrsWhirling
Posted by

Has anyone part of a drug trial for HCC?

My mum was recently part of a trial for one of the immunology drugs, but her cancer showed growth - albeit slow - And she was told she could no longer continue.


She has now been offered another trial, I think for a drug that sounds like Sorfenib. It's the first time it's being tested in humans so sounds really scary.


Has anyone taken part in a trial? Would love to hear your experiences x

mrsyorke
Posted by

Hi there, 

My dad was offered sorafineb 3 years ago when a liver transplant was no longer an option. 

He declined as at the time as was in relatively good health & the statistics only really offered on average an increased life expectancy of approximately 12 weeks at that time. 

He felt that as he was terminal anyway he didn't want any extra time being poorly. 

He was advised that without treatment his prognosis was 12-18 months. 

He is still with us 3 years on although really quite poorly now. 

We had read about some really not nice side effects & as it's not a cure he felt the extra time just didn't warrant it. 

It's such a hard decision to make, I wanted him to try everything but absolutely understood his reasons for not

Big hugs


Laura

Xx

David Mc
Posted by

Hiya Mrs whirling 

Iam on a trial which is a phase 1 trial

Not for the same thing

All phase1 trials are tested in the lab first

If you take part in a trial you will be carefully monitored

In my case I used up all std treatments over 4 years

I pushed to get on a trial to buy more time

I am one of the lucky ones and it is keeping me stable

I do agree this journey is very scary, I scream cry and shout at times, but the thing I find best is to take a few deep breath's

And put the kettle on

Also remember there is no such thing as a silly question, ask whatever you want

A problem shared is a problem halved

I hope this helps

Big hug david

MrsWhirling
Posted by

Thanks Laura.

Mum took Sorafenib for 18mths actually until it stopped working for her. She had horrible side affects, especially at the end.



MrsWhirling
Posted by

Thank you David.

Mum is starting a new trial soon. She is really positive and I am praying she doesn't have too many side effects.

GingerFifi
Posted by

Hi,

I am currently taking part in a stage one clinical trial at the UCL. Its using a combination of 2 drugs nivolumab (has had great success in melanoma) and a new drug call lag 3.

I have secondary liver cancer that has spread to my lungs and abdomen wall.

Am currently on cycle 2, whilst the visits to the hospital every 2 weeks are very long days, the care and monitor I receive is brilliant. I like you was pretty scared at the thought of being on a trial. However I look at it at an opportunity, this drug combination could be a break through in cancer treatment.

I hope this help.

noggydoggy36
Posted by

Hi , I have just read your message. My husband has Hcc not eligible for transplant has 4 tumours 2 have been treated by tace, but didn't make much difference!  Due to how poorly he was with Tace he cannot have anymore. Last week Consultant offered him Sorafenib he refused it cause of side affects and how much longer it would give him. They have now offered him SABR Radiotherapy we will be talking to Consultant next week. If he dosnt have any treatment they have given him a time of 12-16 months. Just wandering if your dad was offered this Radiotherapy or have you heard about it. X