Clinical Trials

Hi Angie

Have you looked on the Cancer Research UK trials page? I looked, couldn't see anything relevant but you may see something I didn't notice. I don't know if there's anywhere else to look. I'm on a trial but mine has closed and isn't relevant anyway. My consultant mentioned the trial to me.

Take care,

Amanda x 

Hi Angie, 

I also have mets to my liver I was offered palative cheamo but I was told immunotherapy was not sutable for me so I couldn’t have it! After myself and my wife  kicking up a fuss I was accepted into a trial in Harley street London doing cheamo and immunotherapy been 6 weeks and I have as of on Monday so hoping for some good news I read on a Facebook post that if your not happy always get a second opinion as the doctors don’t know everything and I felt I was as being left to die ! 
I hope that you find something that suits you  the trial I am on is star -221 if that helps at all 

Stay positive 

kevin 

Hi Kev,

Thanks for sharing this. That is positive to hear. I'm Angie's daughter and will be attending my dad's first chemotherapy session with him Thursday. 

Could I please ask you how you went about asking for a second opinion and who you spoke to regarding the trial? 

When you were told that immunotherapy wasn't suitable for you was that because you were HER2-negative? That is what my dad was told- apparently you need to be positive for immunotherapy trials. However looking at that STAR trial it caters for negative which is positive news!

Are you currently going for treatment in London? We live in the midlands and I will take him to London weekly if needs be. 

Im hoping to speak with his chemotherapy nurse Thursday about all this. 

Thank you

Kayleigh 

Hi yes I’m currently on the trial in London I go down every 2 weeks and stay over (I’m from Liverpool) originally we spoke to the specialist nurse regarding the trials they told me I was negative so I couldn’t have it but on my first meeting with the oncologist she got me on the trial I am on,there is some criteria but I managed to get on it , after speaking to a lynch syndrome specialist oncolohi st he seems to think the sample would have just been tested wrong in the lab as 39 year old healthy men do not get this diagnosis and it will be genetic ! So waiting for the results from it being retested before I complain as other people like your selves may find themselves in my situation they need to be aware !In regards to the second opinion the nurse needs to make the recommendation for you i think we was trying to get a referral to the Christie in Manchester as I’ve heard that’s a great hospital and also that’s wherenoddy holder went with oc and has been in remission 5 years ago . Anymore questions just ask thanks

Hi Kevin 

Like my daughter said we would like to get my husband on a trial, we are willing to travel so any further information would be appreciated.

We will never give up.

Angie 

• I’m not sure how else to do it other than speak to your oncologist make an appointment print out the details of the trials there is a list on the cancer reaclseach website I think there maybe better ones that suit you but that’s how we did it 

Thanks Kev, we will have a look.

Angie

Thank you so much for the information. As my mom just said I will be willing to take them wherever If it's gives us some extra time and more positive results! 

Hope you are ok and coping with everything? 

Many thanks 

Kayleigh