pancreatic NET with secondaries in liver and lymph nodes

Hi JenniferAnne,

Have you visited the neuroendocrine cancer UK website? It's very informative.

My wife too had NET. Sadly, she is not one who got the benefit of years with NETs as can be the case. The support we got through the website and the 'natter groups' was invaluable however.

WDJ

Hi there WDJ

thank you so much for your reply and I’m sorry to hear about your wife. I’ve only really been told my net situation is inoperable and incurable - not v encouraging!  Yes, thank you, I did get a tip off from a friend of a friend about the neuroendocrine cancer. net site. What a treasure trove! That was only v recently though, and I need to read more and learn more. You say the batters were helpful - that gives me encouragement to sign up for one, thank you. I came onto macmillan to look for travel insurance and found more than I’d imagined here, too!   Thanks again, and best wishes

Hi Jennifer Anne,

I too have been diagnosed with the same as you. I also have glucagonoma syndrome of the pancreas which started with a rash. 

Are you seeing a NETs specialist? 

I live in Spain at the moment but waiting to come back to the UK asap.

I'm inoperable and was diagnosed in 2019.

My treatment is Lanreotide 120mg every 28 days.

Been on 2 different target therapy which both stopped working now waiting for PRRT treatment. 

I'm not on creon or any pain medication. 

I'm doing ok and don't have any symptoms at the moment just a little tired if I do too much.

Have you tried some of the NETs group's on Face book some really informative people etc.

I hope you are doing well message me if you need more info or just a chat.

Hi again. Thanks so much for your reply.  I see that you know which type of NET you have of the pancreas. I think there are 5 types but my consultant (a general oncologist) doesn't seem to know or care what type mine is. That's one of the reasons I am so pleased to have fought for and gained a second opinion coming up in Oxford on 16/06/22.  Unfortunately, when they rang to invite me for second opinion, the senior nurse made it clear they won't be offering me any other treatment but the Lanreotide I am on (like you, every four weeks that nasty old jab). I was disappointed as I hadn't realised how hard I'd been hoping that they might, as specialists, want to do something a bit more adventurous. I'll find out why not, I guess, when I see them. They want to do some more tests, anyway, and I'm hoping they'll be a bit more approachable than my consultant, and answer questions so far as they can, and give advice etc as I've really got no service or support here from Yeovil hospital. 

Fancy you living in Spain. So, I wonder, are you entitled to medical treatment there, if you are a UK citizen? I'd be really interested to know. Do you get your Lanreotide injections in Spain, or do you come home for them?  I am hoping to go to Spain for a longed-for Mediterranean holiday soon, but I cannot get any insurance and have been wondering about the global health card which offers basic care in EU.  

I've not been offered any target treatment or any other kind of treatment since my diagnosis in November. I didn't see a doctor for another 3 months after that, so my first consultation was February and he put me on Lanreotide. I have a scan at the end of May and I'm hoping that'll show that the Lanreotide is making a difference, or at least holding things still. I have secondaries in liver and lymph nodes - do you have secondaries too? I guess maybe you're not on Creon because your NET is not causing the same probs (diarrhoea, flushing, gas and abdominal pain) given that its a glucagonoma - is it functioning, does it excrete hormones?  This is all such a learning curve!

I'm really heartened that you were diagnosed in 2019 and 3 years later here you are, and not really troublesome symptoms.  I'm on morphine to help with the pain but I am often in what they call breakthrough pain and take a little extra, but I'm scared stiff of increasing too much.  

This may be a rather insensitive question, and forgive me if so. I understand NET is extremely rare. It must be very unusual for you and your late wife to both have the same cancer - and what a shame she could not be helped for longer. 

Thank you for your encouragement to Jon the natter groups.  I really am feeling a bit shy about actually being there on the screen, but as you say, helpful to talk to others.  Anyway, it's late and I should have gone to bed ages ago but as often happens, I get caught up on emails, but it was good to find this one. Thank you

Best wishes

Jennifer Anne

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