Yet another appointment at the hospital today to see Professor Middleton. I wasn’t sure if it was worth going since I’d already spoken to a doctor about possible clinical trials previously. Pete really likes Prof Middleton so was keen to go and see if he had anything to offer…and he did- mainly advice and a different perspective.
He asked what treatment I am having in Germany and I explained that Prof Harris has said in 6 weeks I should have another CT scan and that if the disease has grown by 25% or more then I should stop that treatment and start chemotherapy again. He is a very calm chap with good energy. Down to earth and a believer in new things (or else he wouldn’t suggest trials!)
He suggested asking Dr Nesselhut when he would like me to have a CT scan. personally Prof Middleton thinks I should wait til the course of immunotherapy finishes UNLESS I start to get symptoms and ill health.
Her said that the CT scan only shows small blobs at the moment. The thing with the immunotherapy/ dendritic cell therapy is that tumours can actually look larger as it could be full of T-cells (the cells that try to stop the cancer) making it appear bigger. A scan can’t determine that.
We questioned the necrotic node. He said it’s neither good nor bad. The node has had it’s blood supply cut off which could mean that it is out growing the area however, if they had been treating me with chemo, for example, they’d probably give themselves a pat on the back for having achieved that result!
The comment that stood out for me is this, ‘ If I didn’t believe that expermiental new trials worked I wouldn’t do them.’ That was great to hear that actually new, apparently non scientifically clinically proven treatments, are accepted treatments that may work- that there is no reason for them not to…
So off to Germany tomorrow. I will discuss with Dr Nesselhut my forward plan and also the new antigen from Australia known as nf-P2X7 (very catchy title). I will explain more about it when I know more. But essentially it is to do with cells having death receptors which cancer cells have abnormal ones. The new antigen antibodies attach themselves to these abnormal receptors and this combination then appears to result in death of the cancer cells – perhaps by re-initiation of normal apoptosis, perhaps by another mechanism such as attracting lymphocytes and macrophages which are involved in killing cells.
Prof Middleton also mentioned a new trial starting in December with something that involves the SRC gene (sounds like sarc). Maybe thats another option if required.
All in all a good meeting with a genuine friendly doctor. He said we could go and see him any time… Cooolll . 🙂
Just want to add one of the many things I have been thankful for today. We have the best neighbours ever. They are so friendly, kind and generous. I have never lived somewhere before where I have been able to chat over the garden wall and feel safe in the knowledge that when we are not around they are watching over our home and our kitty. OO plus I am very grateful for the courgettes that they grow! Mmmm organic and home grown.
Right where’s my husband? We need to get on the road soon.