Pancreatic nets

Hi Chazzer and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm sorry to read that you have been diagnosed with a NET tumour. I had a different type of cancer but you're right when you say that "you just have to keep going".

I'm sure the other members of this group will do their best to answer any questions you may have and to share their experiences and give you support.

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. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi I'm new to this forum but as a wife of a husband diagnosed with a net tumour in the pancreas. 6.5cm about

2  inches. He was diagnosed 18 months ago and is on monthly injection lanreonatide (sorry can't spell it)

Surgery isn't an option.  I'm finding it very difficult because he has taken to his bed and won't go out  he doesn't have symptoms at the moment and the scans  say it hasn't grown or spread. Any advice would be appreciated 

Hi peugeot

i to have the same condition as your husband mine are also in my liver  but your husband really needs to get up and about  why has he taken to his bed I’m curious as to why.  I have a sandostatin injection every 2weeks  does he take anything else ?  Hope you reply cause with your answers I might be able to give you more info  

look forward to hearing from you  spotter  

Spotter Thanks for replying. I  am so sorry to hear about your diagnosis. Hope your treatment is working.
I asked him about staying in bed only this morning. He says he doesn’t want to go out because of his anxiety due to his diagnosis. He can’t stop thinking what is inside him and is it growing or spreading. But that to me is out of his control. The hormone therapy is working, he has had 4 good news results.

he also has a blood clot on his lung which he takes apixaban for. He’s on insulin for diabetes and antidepressants for his anxiety but he just worries all the time about dying.  He hasn’t been dressed in 6 weeks in his pj’s all day and it’s not like him because he is a very smart man. This could go on for years. I don’t know what to do. I’m doing online shopping because he doesn’t want me to go out also. He’s 74 I’m 68. Sorry for going on a bit.

Hi

1. from what you are saying your husband needs to see a doctor his problems are way out of my league. I can only talk about our similarities in Nets. Just by getting out of bed would be a start and the thoughts in his head well again only he can sort those out. I feel for you because your husband’s actions are affecting your quality of life. 
   Regards Spotter. 

Thanks for your reply. And thanks for listening. I agree a doctor is needed in his case. I’ll get that sorted. 
I would be interested in your situation. Is your net in it’s primary site the liver. And how long have you had it. Is it stable with the injections. 
regards

Hi there,

I also have a net in my pancreas and secondaries in my liver. I was diagnosed Christmas 2021 with the cancer and also Zollinger-Ellison syndrome as my tumour is a gastrinoma. I have octreotide injections every 4 weeks and they seem to be keeping things on an even keel. I can do most anything I want to and the only drawback is I do get tired toward the end of the afternoon. I'm sure your husband could be as active, he just needs to realise he is living with cancer, not dying from it. Nets are relatively slow growing, what is his Ki-67 figure?, mine is <10%.

My first tumour was found in my small bowl in 2013 I then had sandostatin injections everything was fine. Then app 5yrs ago they found the tumours had spread to my liver and lymph noads. I had nuclear treatment to shrink them but no I’m on my injections 2times a month I take pega lim for pain félido along with a 10 mcg morphine patch. I can do most things just get tired late on in the day. 
well that’s me. Cheers spotter. 

Hi phil099

thanks for replying. It’s very encouraging that you are positive especially with secondaries. You are right he is living with cancer not dying. I do tell him that. 
I wish you well on your journey. Thank you for giving me some insights into the disease. 
realising you can have n almost normal life. I just need to convince my husband now.  
regards

peugot_12