A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

Moderator: volmod

Nellie656
Posts: 1
Joined: Thu Apr 05, 2018 10:38 pm

Nano Knife for Stage 3 inoperable PC

Postby Nellie656 » Sun Sep 09, 2018 5:04 pm

Hi, I'm new to this forum but have had email discussions with the specialist nurse. After recent treatment she has asked if I would share my experience on the forum. So here goes, hoping this gives someone somewhere a little more hope.

I was diagnosed with Stage 3 inoperable PC on 29th June 2017 with a life expectancy of 10-15 months. Great news the day before a Baltic cruise. I started a course of chemo, Folfirinox on 1st August 2017. Every 2 weeks. Having had Breast Cancer in 2011 that chemo was like a walk in the park. After 4 sessions the scan showed a great shrinkage from 5.9cm to 4.9cm. I had 2 more sessions and then they decided on a course of Radiotherapy. I was put on chemo tablets at the same time and finished the course on Christmas Eve. Scan in February 2018 showed remarkable shrinkage down to 1.7cm. Consultant was amazed at the result but tumour was still inoperable as it was encasing the 2 main arteries in the pancreas. So the only option was 3 monthly scans and blood tests for tumour markers.
I asked if that was it and was told all treatment was finished and all they could do was monitor the situation on a 3 month basis.
Of course I went home and started the research into option that might be available via the internet, sticking mainly to this site and other UK based websites. Proton Beam was ruled out as I had had Radiotherapy. So after looking at alternative therapies I read up as much as I could on IRE, Nano Knife.

Armed with the information I attended my next consultants appointment in April 2018 only to have all my hopes dashed when he dismissed the idea as fanciful. Looking back I think where I went wrong was telling him I had done the research. Something I now realise an expert doesn't like to be told. So as IRE, Nano Knife is not licenced by NICE my only option was to consider paying at one of the private London Hospitals.

I had my June appointment with the consultant and everything had changed. He had researched the procedure, referred my file to a nearby large teaching hospital and they had agreed to see me.

So over joyed. Was expecting an appointment in a couple of months but things moved fast and by the end of June I had been to see the Prof who carried out the procedure under a research programme. She had consulted with the PC consultant surgeon and MDT at her hospital as well as her working colleague in the USA and I has accepted for the procedure. She had only done 8 PC patients before and the criteria is very tight on this. She did say one of the factors in my favour was the excellent shrinkage from chemo and Rads as well as a positive attitude and good fitness levels. I had the procedure on the 19th July with an overnight stay. It took 4 hours to carry out under general anaesthetic. I've managed to recover OK so far from the procedure. a little sore for a couple of weeks as the procedure does cause considerable inflammation internally. I have to wait 3 months before my PET scan to see what effect the procedure has had. That's due on 18th Oct which seems like forever. One thing the Prof did say was that if need be this procedure can be carried out again if needs be. So my 15 months life expectancy is this month. I'm hoping for a decent extension on that as hopefully the IRE will have done some good in killing off some of the cancer cells. I went into this knowing it wasn't a miracle cure for PC but a way of extending my life expectancy for a little longer. I have so much to live for, 2 beautiful grandchildren under 3 years, a great family and lots of things I still want to do. When I took early retirement from work in 2016 I never expected that a year later I would be facing this. I'm still positive but do have days when I feel tired, unwell and the mind starts to wander. It seems like forever waiting for the PET Scan and then appointment to find out the results of the procedure. As soon as I get that at the end of October I'll update this story. I just hope this will give someone out there hope. you have to fight for what you feel might be right for you but remember this procedure isn't suitable for every inoperable case. If anyone needs further info about my procedure etc please message me as I'm happy to share or help in any way possible. xxxx

toodotty
Posts: 129
Joined: Sat Jun 09, 2018 4:17 pm

Re: Nano Knife for Stage 3 inoperable PC

Postby toodotty » Sun Sep 09, 2018 10:08 pm

Hi Nellie, thanks for sharing this. Unfortunately a lot of Oncologists are entrenched in the past and poo-poo anything that hasn't been through a NICE clinical trial. I have heard that there is a clinical trial now available for Stage III PC sufferers but so far only 3 people are on it.
For anybody Stage IV PC you can only have Nanoknife if you pay privately, and as I found to my horror recently only if an MDT approves this. So having had my liver treated I could not continue with the tumour on the pancreas.
I totally agree with you about having too much to live for to give in so soon. Keep fighting and don't accept NO for an answer.
Thank you for sharing your story,
toodotty