I have been on the trial drug TDM-1 for a year now & it’s going really well, an early CT scan showed a reduction of 69% & since then things have been stable. I’ve been having CT scans every 12 weeks & now today I’ve found out I have to have them every 6 weeks. I feel really upset by this, like it is going to take over my life (not that living with cancer doesn’t take over your life).
My nurse seems a bit confused & isn’t are whether I should have been having more frequent scans all along or if the protocol has recently changed.
As it’s a trial I guess there’s not a lot I can do about it, I guess I was just wondering if anyone else has experience of this drug & how frequent their scans are?
Sorry Nikki, can’t help you re the drug. It does sound encouraging though. What type of drug is it, is it a type of hormone or a chemo (or something entirely different?) What has shrunk by 69%?
I am encouraged by hearing of new things working, as I seem to be exhausting things that seem to work for others.
As to frequency of scans, I have every 3 months NOT being on a trial so every 6 weeks seems reasonable for a trial. My mets spread considerably between my last 2 scans 3 months apart, so I would have liked to have known a bit earlier. Although I appreciate going for a CT scan isn’t exactly a nice experience!
I would see being screened more regularly as a positive thing! perhaps they are encouraged by the quick shrinkage, so want to monitor how long it takes to achieve total shrinkage.
I was fascinated to learn about TDM-1, as I hadn’t heard about it before. I think I am really ignorant about all the different, and potentially relevant, treatments there are! Here’s another link I’ve just found about it:
Thanks for the replies, there is really very little info about the drug on the Internet, I’m on the Emilia trial that was mentioned in the 2nd link posted. It would seem that the post of Research Nurse has only recently been filled in my hospital & I should have been having scans every 6 weeks for he past year, it has only just been picked up with the new nurse realising. It’s a bit worrying that no one at the trial noticed but there you go.
I had a CT scan the other day & the results have come back stable again so I am very happy with that & I will get used to the new routine of more frequent scans, I know that it’s good them keeping on top of things but it was nice having that chunk of time where I felt confident I wouldn’t be getting any bad news.