Whipple procedure for cancer if ampulla of vater

[Hillary210]

Has anyone here had a Whipple for anything other than PC? Mine was in November 2018... one lymph involved.. so taking PO chemo.

[Daneesha]

Hi hillary.. how are you doing right now? How long have you been diagnosed with pc? If you dont mind, could you share your symptoms before diagnosed?

[Hillary210 in reply to Daneesha]

I’m doing great! I actually did not have PC, rather amullary adenocarcioma. I was diagnosed completely in September 2018, had the Whipple in November 2018... one out of 17 lymph’s taken was adeno positive, so I’m on pull form chemo. I’ve been very lucky that it wasn’t pancreatic by origin, they are treating it like duodenum by origin. I had very itchy skin for a week and really dark urine... then went in 7 days later to the hospital ER... diagnosed a week later.

[jumbobumbo in reply to Hillary210]

Had very similar with my Whipple.They thought it was PC but was duodenal cancer All was removed and now started on CHEMO VIA TABLET,3 WEEKS ON 1 OFF FOR 8 CYCLES.I FEEL FINE AFTER 5 months.Only just finished 2nd cycle but not too many side effects,nothing like as bad as they lead you to expect. Am hoping the next 5 cycles will go as well. I was itchy for months,took dermatologist to find it was more than just a skin complaint.

[Hillary210 in reply to jumbobumbo]

Hey we are twinkies! Yes... mine was also non pancreatic and they are treating it like duodenal CA. I’ve been on Xaloda (pills) two weeks on, one week off and have only had a bit of hair thinning... this Thursday is my 7th cycle. I finish in early July. I think we are majorly lucky. Scans are clean... God is good.

[drschwartz in reply to Hillary210]

So, when you say 'they're treating it like duodenal CA', is that because they don't really know much about ampullary cancer due to its rarity?

I'm so thrilled I found you!

FYI, I'm 61 and in generally very good health (ok, the knees aren't great). I'm retired and, when well, I cycle a lot.

[Hillary210 in reply to drschwartz]

Yes, it’s because ampullary cancer is so rare. I’m 61 too and I’m great health.

[drschwartz in reply to Hillary210]

May I ask where you were treated and the details of your condition and treatment?

[Hillary210 in reply to drschwartz]

Yes, of course. I went the academic route. UT Health in San Antonio, Texas. Dr Glenn Halff did my surgery. I did my research on who to go with as well as facility. You want a place that cranks these out. Nursing training, etc. treatment was PO chemo for 6 months... I tolerated it well and worked the whole time. My condition is that I’m cancer free.

[drschwartz in reply to Hillary210]

Thanks for the info! Do you have dietary or other limitations?

[Hillary210 in reply to drschwartz]

Well no one instructed that after surgery... they just wanted me to eat anything. You’re really not hungry for weeks. With that being said, I am NOW on a low fat diet... really watching fat content as to not upset the pancreas. I’ve had a couple of pancreatitis, since then I maintain a low fat diet with little animal protein and lots of fruits and vegetables.

[drschwartz in reply to Hillary210]

for how long were you hospitalized after the Whipple?

[Hillary210 in reply to drschwartz]

I was in the hospital for 6 days.

[drschwartz in reply to Hillary210]

wow, that's incredible

[Hillary210 in reply to drschwartz]

I went home with a drain and that was removed in a couple of weeks after.

[Sophie246]

hello Hillary, I hope your doing well.

My mum had a wipple procedure for Ampulla cancer in September, she is now have a 6 month program of chemo 3 weeks on one week off.

I’m just wondering how you are doing now?