Firstly, I would say that I'm not good at this. I usually tend to read posts trying to find comparisons and some reassurance with my own journey with NETs, but here goes.
The one thing that I have noticed is that although there are similarities, everyone has their own story and treatment and ongoing symptoms seems to vary so much.
I am 58yrs old and started my journey as most with regular visits to my GP in North Wales over the years until late summer 2020 when things took a turn for the worse and my GP mad an urgent referral request and while I was waiting an abdominal ultrasound was organised at my local hospital. This revealed numerous lesions in my liver. Large lesions and I was simply told that another urgent referral was to be made.
This was then followed by a colonoscopy, CT scan, MRI and a liver biopsy .........ouch!! in January 2021.
Diagnosis, - Multiple lesions, tumours in the liver. The largest being 14cm, 9.5cm and so on with numerous smaller tumours in all lobes. No primary lesion located. Metastatic Neuroendocrine tumours, grade 1. Slow growing, so they've been growing for some time.
Feb- First consultation in Liverpool and started Lanreotide 120mgs monthly. (I still have side effects with this and although I'm not a needle phobic, I am getting worse every month and hate having them).
April- Gallium scan in London. Still no primary located, but uptake shown in the duodenum D2/D3 and an EUS and gastroscopy was arranged in Liverpool, but nothing reported or seen during the procedure.
I was still having quite a range of symptoms on a daily basis after trying most of the recommended meds available and the discomfort from my liver was and is still is distressing.
I have a difficult time trying to sleep at night as I tend to go around and around in bed due to the discomfort from lying on my front.
Hypoglycaemic events are also an ongoing issue and seem to occur on the slightest of exertion. The lowest drop being 2.9 mol/L. Very unpleasant, but I’m usually able to remedy this with some glucose.
My next CT was in Oct followed by the usual face to face with my consultant who informed me that the secondary tumours in my liver had increased in size overall by 25%. So, how big does that make them now? I know as I can feel them. They are incurable and not eligible for surgery, I was told.
Next phase - PRRT to start in January this year. I could have started just before Christmas, but preferred to wait until the New Year, and I’m glad I did as I’ve had a horrible time with this treatment and did not enjoy it.
Four courses of PRRT at two monthly intervals. Each time followed by extreme nausea and fatigue lasting for weeks.
I spent most of the time in bed for one to two weeks following each course on antiemetics and found it frustrating to read that most people undergoing this treatment seem to have fairly mild symptoms.
It also had quite an effect on my taste and smell that has put me off certain foods and drinks.
My last course of treatment was on the 5th July and I was relieved that it was over although most days I still struggle with a whole range of symptoms and fatigue and find it hard to cope with at times.
I have been informed that my next CT scan should be around Dec/Jan to review the situation.
Before all of this started I was a keen ultra-runner and always out walking in the local mountains and hillsides. Very active.
I have tried running, but after a round a mile and a half I simply crash out, usually with hypoglycaemia. Short walks seem a better option.
Friends do say to me that they wish they could run a mile and a half, which is funny, but I’m still not use to this.
Why is it that many of your friends go quiet on you once they know what you are going through?
I still struggle with my mental health with days of low mood and depression since this all started and it doesn’t help that we are living in such a chaotic world at present.
Trying to find positivity is really hard and it's not for trying. I do have hobbies that do help to keep my mind active, but it's still hard at the moment and most of my hobbles involve craft. If i'm not in the mood, it doesn't happen.
Thats enough of me moaning as I am well aware that there are so many people out there in far worse situations who have to deal with a whole lot more than I ever do, but I just wanted to share me experience.
Take care of yourselves.
Hi Mr T
Thanks very much for taking the time to tell everyone about your experience with NETs. I don't have this type of cancer but I'm sure people joining the group in the future will find it very useful.
You sound like you've been through a lot but I agree that it's important to have interests and to try and stay reasonably fit if possible. Whilst I don't run I do enjoy going for a walk and try to get out each day for an hour if possible. I am an avid family tree researcher which is ideal for those times when I don't feel like doing a lot as there is so much information on line these days and it's easy to lose an hour or more looking for information!
It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. You could copy and paste what you've written here. To do this click on your username and then select 'Profile' and you can amend it at any time.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Mr T,
Your experience actually sounds very inspiring. Have you been living with NETs for over twenty years now?
My wife, very sadly, wasn't diagnosed until stage 4; Covid played it's part. 
I will not go into the rest but she only lasted just over a year.
Your question about friends is though very true. They seem to walk away from these situations for whatever the reason.
Stay as strong as you can as, truly, your experience is an inspiration to others
WDJ
