It's not good news

You should never try and second guess these things, we thought everything was going well, legs shrunk down, circulation improving, foot wounds healing......we were fairly confident Reo virus was doing it's stuff.

This week we went up for the Monday appointment to check the bloods and to get the scheduled CT scan & heart ultrasound (trial protocol). Unfortunately the blood results came back and showed I needed a transfusion, so we had to stay another night. On Tuesday morning we started the transfusion. After a time Martyn the doctor came in (closed the door behind him for privacy, which is not a good sign) and said they had reviewed the scan from Monday and the disease was still active. The pelvic tumour hadn't progressed, but because my bloods and liver were getting a hammering, they felt there was no point in continuing the trial, another blow was that the scan showed some small lesions on my liver, they werent noticed on initial baseline scan, but they werent looking for them. Not good news.

So they have taken me off the trial, and now I have to take a decision about whether I take a chance with another trial or go away and concentrate on getting symptom control ie palliative care and getting on with the rest of my life & live with it. They want to know what we decide next. The doc said they are happy to find me another trial (no guarantee of getting accepted though), but we really need to consider wether I want to spend all my time travelling to the Marsden and getting pumped full of trial drugs, or getting on with the rest of my life...

will let you know what I decide. As alway telling family and friends not something we look foward to.

ps. frank finished editing this post for me on the dongle, camping in Abbey wood & published it, because I crashed out... chilling :)