Clinical trial

[Carpag]

I am still waiting for the RM to confirm whether I have the tumour marker P53. They had said it would be a couple of days but now nearly a week later it's not confirmed. I am getting really anxious that time is passing by and I haven't started any treatment. This morning I spoke to the Research Nurse and she said this affects many people and my decision whether I go back to my local hospital and have treatment there.I now have symptoms such as a swollen stomach due to ascites and have been on watch and wait since last August so I'm really anxious about what to do.As far as I know I have nodules in my lungs and in the perineum. Has anybody any advice?

[January-2016-UK]

Phone the research nurse back and ask her what is the cause of the delay. If it’s maybe your original hospital you mught be able to chase them up.

[Caroles1]

I think you have to be a bit more insistent than you are being, it seems to be a long time on watch and wait, particularly if you have ascites.

Can’t they drain you if you are uncomfortable? Or give you chemo? Is there someone that could go with you if you arrange an appointment?, someone to fight your corner? I’m afraid sometimes it’s who shouts loudest, but you don’t want to be forgotten and suffer unnecessarily.

Why don’t you ring the nurse on this site and discuss your history, you may be able to formalise a plan going forward,

Lots of love to you,

Carole xx

[Carpag in reply to Caroles1]

Thanks for your advice Carole. I'll ring the nurse tomorrow x x