Neuroendocrine cancer

Hi is there anyone on here that has NET’s or caring for someone with NET’s?

Parents
  • Hi Marjanhol60, my husband has a pancreatic NET that has spread to his liver. He is in his late 50s.

    He was diagnosed with pancreatic cancer at A&E last October and it was a few months before that turned out to be the wrong diagnosis. He started treatment in January this year.

    He is currently having chemo (CapTem) - a three month scan has shown very minor shrinkage in the tumours which is disappointing - but at least they aren’t growing! He’s also on Lanreotide and takes Creon every day to help his digestion.  

    So far he is doing well. He has had some minor side effects from the chemo but they are manageable, and he is still very active, including sport (though I’m worried this will be harder for him than he expects). 

    What’s your situation? It’s one of those cancers that few people have ever heard of so it’s good to be able to speak with people going through the same thing. 

  • Hi there that’s good news about your husband I’m glad he’s doing well long may it continue!!

    we are facing some challenges unfortunately there have been slight increases in the tumours after being stable for over 4 years so we are now hoping to be able to access the PRRT treatment which we should know in the next couple of weeks. Unfortunately my husbands diabetes is causing more issues that the NET at the moment so things are quite difficult for us right now.

    its so important your husband keeps active, my husband was very active until the diabetes issues and it really helped with his mental wellbeing,

    please keep in touch like you say because it’s very rare it’s lovely being able to chat to others in the same position.

    all the best 

  • Thanks. I hope you get access to the PRRT, and I’m sorry to hear about diabetes - I can imagine managing two conditions makes it much more complicated.


    It’s been mentioned as a next phase of treatment for my husband - once he finishes chemo and when/if the tumours start growing again. 

    And thank you too for the comments about exercise - it makes such a difference for him.. 

  • Offline in reply to marjanhol60 Unpublished Reply

    Darn, I just wrote a reply and it got lost somewhere! 

    I hope you get get access to the PRRT. It’s been mentioned as a next phase for my husband once the chemo has stopped and if the tumours start growing again. 

    And thank you too for the comments about exercise - it makes such a difference for him.. 

Reply
  • Offline in reply to marjanhol60 Unpublished Reply

    Darn, I just wrote a reply and it got lost somewhere! 

    I hope you get get access to the PRRT. It’s been mentioned as a next phase for my husband once the chemo has stopped and if the tumours start growing again. 

    And thank you too for the comments about exercise - it makes such a difference for him.. 

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