Pancreatic NET

[Ju139413]

hello, I’ve been under the care of the hospital who have been investigating a cyst on my pancreas. I had had scans, endoscopies, etc. and were monitoring me and last July I had a further scan. I got a phone call to say it had got too big too quickly and they wanted me in hospital. I was advised to have a Whipple procedure to remove the pancreas head. To be honest there wasn’t a choice, there was no way I was going to leave it and see if it got any bigger. My dad passed away from pancreatic cancer so it’s always been at the back of my mind. So, I had the op, had lots of complications and had to spend a month in hospital recovering. My results came through whilst I was still in hospital and it was cancer. I was totally unprepared for that and went into a bit of tail spin!! It turned out to be a Neuroendocrine tumor and I have to have a further scan to see if they got it all end if it’s spread. Has anyone else had experience of this and if so when u had a further scan where any more tumors found ? I realize I’ve been really lucky, have been monitored really well and have had the tumor removed in the middle of a pandemic and there are lots of positives but I am still worried about further tumors. Thanks

[Skippy]

Well done you got that Whipple. My bro (75) had that op Sept 2019. After his op it took two months of hosp stay and then recovery at home. DEC 2019 he begun the chemo (not Firenfox) which was to mop up stray cells. Hes gained weight and energy and continued reasonable well, until he begun pain in his back. There he requested another scan.

Only has tiredness. He had no further scan until Dec 2020.

There has been a disap with the results showing a "spread," but we remain very up beat. We will look each day as it arrives. We went with Budwig Diet since the Dec 2020 results and so far no set backs except fatique. His weight is steady with average BMI.

[Ju139413]

Thank you for replying. I seem to be healing well, the Whipple certainly isn’t for the faint hearted is it !! I too am suffering from fatigue but it’s still early days for me I suppose. I wish ur brother well for the future

[Skippy]

The Whipple op was a long 9 hrs and we think how lucky it was to be given this opportunity. It was a long haul due to a lengthy drainage and necessary food packs but he got there. His jaundice had just appeared day before the op.

He was fit enough for home and gained weight okay. It was trials with the Creon at first two tablets but increased to 4/5 as he took to a good meal. Yes lots of wind and burps but generally was OK. The chemo was daunting but nurses were great and explained whole processes. His blood tests taken to ensure he was suitable for his particular combination of chemo.

We were v surprised no reactions to chemo other than 2-3 days of fatigue and remaining week up on his feet well. He's been good for a year.

I do feel the stopping of the chemo was a loss to us ( due to covid ) as he only received half his chemo treatment.

Hes been invited to take Firenfox now when scan shows two minor lesions to the liver and 'shadow around the remaining pancreas site'. Hes decided not to go along with Firenfox. He is eating sensibly, has no pain. Has an appetite and we just want him to be comfortable. We have that right now.