Trial PETNECK2

It looks a like a very worthwhile initiative....PETNECK2 Home | PETNECK2

Hi both Dani zBeesuit  I were involved in the original trials for pet neck 2 a good few years ago. The basis of it is if we were as patients to get reoccurrence d we know our own bodies before a camera would pick up anything and the guarantee was you would be seen within2 weeks if you have any issues. 
i wasnt a  live trial when we were involved but I think there’s around 200 enrolled. So if hes happy to go for it just do it. 

Hazel 

Worrylo said:

he has been offered to take part in a trial (PETNECK2).

Hi. This trial is for low risk patients whose risk of recurrence is as low as it gets. It’s not offered if the MDT feels that frequent monitoring might reveal progression of disease. 
So….it wouldn't be suggested otherwise. 
If he is happy to self monitor then he should go for it. 
My only caveat would be how you feel?  I know it’s his cancer but it’s also yours by proxy and I know how you have worried about him. How comfortable would you be to lose his routine reviews? 
As Hazel has mentioned we were both involved in the design of the patient interface. If the trial had been around when I was in my first year I would have jumped at the chance of a PET at a year then being allowed to self monitor, but then I do have a medical background.

i would add that my oncologist is pretty clear that recurrence is usually picked up by the patient, not by review. He is a great fan because he feels that much if his time is wasted when he could be better employed treating more sick patients.

 Once you are part of the trial you are guaranteed early access to your team if you are worried. There is also a patient forum that offers huge peer support. 

I can’t member when the trial closes, I think five years from the start? 
I suspect this is the way follow up will go anyway 

Thanks Hazel. That’s really interesting that you were involved originally. I think he will take part. 

Thanks Dani. That’s really interesting that he has been identified as low risk. I think he will definitely take part in the trial and will update this threat later in the year

Hu I like Dani would have jumped at the chance it wasn’t available to us but was interesting and rewarding taking part. An interesting fact   mid way through year 3 I was at a routine dental appointment and my dentist of 20 years wasn’t happy with my gum ( I knew what it was I had eaten a ryvita and it cut my skin)  but she insisted that she wanted me to be seen and my next ent was 6 month away. The system works she contacted them I had a phone call within 3 days and a face to face within 10. It was nothing but she was vigilant and the system worked. So if he’s happy to do the monitoring go for it. My husband used to feel my neck regularly he asked one of consultants  what to do and he did it at least one a month that way he got to know what it felt like so could pick up anything different. He always stood behind me when doing ut. Make sure he keeps uo with swallow exercises as well I and I know Dani still do them even at overv6 years. 
look forward to updates. 

Hazel x

Yes please do keep us in the loop. 
When is his first year up? He’ll be monitored as usual till then. 
I asked if I could poke my nose into the forum ( not to participate but to glean information on the problems folk were facing) but was met with a resounding NO

Good evening Worrylo, i agree with what the rest have said, good luck to you and your husband. A happy new year also .

                                                                                  Chris xx