KT1 Posted September 20, 2022 Share Posted September 20, 2022 My mum has been offered the Primus-001 clinical trial. I was just wondering what people’s experience of this trial has been. Thank you. Link to comment Share on other sites More sharing options...
tim_wild Posted September 21, 2022 Share Posted September 21, 2022 Hi KT1, My partner was recently diagnosed with pancreatic cancer. She too has been offered the Primus-001 trial and wants to take it up but as yet no experience of actually being on the trial but only of trying get on it. Between being initially diagnosed with cancer and seeing the consultant she developed jaundice and has had to have bile duct stent put in. This delayed the start of chemotherapy whilst her bilirubin levels came down. Another further delay we've now encountered is that she has to have another CT scan prior to starting the trial which then needs to be reviewed. This is something that we hadn't expected as we had hoped she could have started chemotherapy this week, so something to watch out for. If she had decided not to go for the trial then she could have started chemotherapy this week instead. Link to comment Share on other sites More sharing options...
KT1 Posted September 21, 2022 Author Share Posted September 21, 2022 Hi Tim_wild, Sorry to hear that. Thank you for the advice. Mum has an appointment on Friday so I will ask how soon can she start treatment. Hope your partner can start chemo soon. Link to comment Share on other sites More sharing options...
Support Team Posted September 22, 2022 Share Posted September 22, 2022 Hi KT1, Please feel free to be in touch with the specialist nurses on our confidential Support Line, should you wish to. They may be able to give you some information regarding Primus -001, from a different perspective though, as I know you are asking for anyone who has experience of it. The support line nurses are contactable on email: nurse@pancreaticcancer.org.uk or on the free call phone number 0808 801 0707. Kind regards, Administrator Pancreatic Cancer UK Link to comment Share on other sites More sharing options...
KT1 Posted September 22, 2022 Author Share Posted September 22, 2022 Thank you Link to comment Share on other sites More sharing options...
tim_wild Posted December 16, 2022 Share Posted December 16, 2022 Hi KT1, After my partner's first round of chemotherapy she got an infection in her gall bladder and ended up in hospital for 3 weeks. After she came out of hospital the jaundice came back so she had to have her bile duct stent replaced. Both of these delayed her next round of chemotherapy allowing the cancer to grow. Unfortunately as cancer her grown she's no longer eligible to continue on the Primus-001 trial. I don't think the Primus-001 was the cause of her gall bladder infection just an unfortunate timing after she'd started the trial. Now off the trial she's just had her second round of chemotherapy with FOLFOX with the view to stepping up to FOLFIRINOX on a later cycle. Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now