I'm new to this forum...love to hear from ppl with PNET :)

Occasional Contributor

I'm new to this forum...love to hear from ppl with PNET :)

I'm a 52 year old mum of two beautiful kids - 18 & 20. I have PNET - Pancreatic Neuroendocrine Tumours. I was diagnosed in May 2012. I have mets to my liver, where I had 4 tumours. They pretty much wrote me off saying it was inoperable and have about 12-15 months. I had 5 rounds of chemo up till Oct 2012...Carboplatin and Etoposide...3 days a week every 3-4 weeks depending if my neutrophils were high enough. After regular CT scans the tumours hadn't responded how they expected and my oncologist decided to give surgery a go as they had remained static. On Dec 10th 2012 I had a 10cm tumour removed from seg 2 of my liver as well as the 3 other smaller tumours..so lost about 50% of my liver and am scheduled for a Whipple early Feb this year - 2013 (in about 3 weeks). I've recovered well from the liver surgery but have to admit to being a tad nervous about the Whipple. I think the hardest with the rarity is not having any protocol to follow. .....Initially they said I'd live about 6 months, then it was 12 - 15 months and now a possibility of a few extra years if the surgery goes well. Which is fantastic news for me as I want to see as much of my children's lives as I can!
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Re: I'm new to this forum...love to hear from ppl with PNET :)

Michelle1960 The whipple surgery is big surgery but with the right attitude surgical team and persistence you will get there good luck with the surgery kj
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Re: I'm new to this forum...love to hear from ppl with PNET :)

Hello Michelle, I'm caught up in that NET too. Mine originates in the large intestine but seems to have pretty much taken over my body top to bottom. I havent been given a specific prognosis as yet - was led to believe that chemo was the best course of action for it (not something my personal research has supported)and have had a vague - 70 - 80 percent chance the chemo will put it to sleep - something I am fast learning may have been a tad optimistic. Anyway, I just wanted to say good luck and I hope it works out for you. This is certainly a nasty business but II lament on a daily basis why couldn't I have been chosen by something a little less rare, a thought you probably share - I am feeling a bit like a test case for those that follow because it would seem at every turn the medicos are a bit stumped and clutching at straws here ... anyway, noo more whinging. Good Luck! Cheers - Tony F
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Occasional Contributor

Re: I'm new to this forum...love to hear from ppl with PNET :)

Hi Michelle. We have a group on here called neuroendocrine cancer (NETS support group). If you click on Groups you can join this group. I know of some in the group who have had the whipple surgery. I wish you all the best with your surgery and treatment. Cheer Robyn
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Occasional Contributor

Re: I'm new to this forum...love to hear from ppl with PNET :)

Sitting waiting for my oncologist...my CT scan from this .morning was online so i read it in dismay...after my liver resection last month my surgeon told me he was confident they 'got' all the tumours and that in segment 4b there was no tumour found (previous CT said there was one there). Now i read the report and there is indeed a 'low density foci ' in segment 4b & 5 😞 sooo....did he miss it!!!! I was feeling positive before and confident in my surgeon....but now I just dont know....so demoralising :'(
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Occasional Contributor

Re: I'm new to this forum...love to hear from ppl with PNET :)

Hey Robyn ..i did request to join the neuroendocrine group when i registered but it still says 'awaiting approval' ?? How long does it usually take plz? Ta 🙂
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Occasional Contributor

Re: I'm new to this forum...love to hear from ppl with PNET :)

Hi Michelle It did take a little while for them to answer my request but they apologised for the delay. We are having a chat session on 11 Feb at 7pm eastern time so you could join in the chat then after they accept you as a member of the group. Hope you get good news when you see the oncologist. Cheers Robyn
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