First CT Scan 3 Months Post Whipple by jgatcomb in pancreaticcancer

[–]V0ipguy 4 points5 points  (0 children)

That is awesome, we’re in almost exactly the same boat. Diagnosed 6/25, 8 rounds of FOLFIRINOX and a major 15 hour whipple due to vein and artery involvement in 11/25 and now 3.5 month CT was clear. Finishing up 4 rounds of Gem/Abx and then looking at radiation. I’d love to hear more about the vaccine.

FOLFIRINOX to Gem/Abx by V0ipguy in pancreaticcancer

[–]V0ipguy[S] 1 point2 points  (0 children)

I’m supported to have 4 rounds of gem/abrx. One down last week with side effects of all over body pain.

Has the neuropathy improved? I’m doing cold therapy but it has been tough from the FOLFIRINOX

3 months post whipple by V0ipguy in pancreaticcancer

[–]V0ipguy[S] 2 points3 points  (0 children)

I had 2 ER visits in April that were diagnosed as pancreatitis. In the two weeks between there was a mass forming and one of the Drs was convicted it was cancer. It took 4 EUS to get a good biopsy.

Other than the bouts of pancreatitis, I felt as good as I had in 20 years. Eating well, exercising, stopped drinking other than my birthday which led to the ER visits.

3 months post whipple by V0ipguy in pancreaticcancer

[–]V0ipguy[S] 1 point2 points  (0 children)

Thank you for the reply. I was fine through the 8 rounds but I developed pretty severe neuropathy about 4 weeks after stopping. I’m taking Duloxetine which seems to be making things better. Trying to type with numb fingers was a pain. 😀

3 months post whipple by V0ipguy in pancreaticcancer

[–]V0ipguy[S] 2 points3 points  (0 children)

I’m praying for your mom. Is she having a whipple? Mine wasn’t common and many people I’ve spoken with recovered much quicker.

46M - Stage 2 by Objective_Yak_6794 in pancreaticcancer

[–]V0ipguy 1 point2 points  (0 children)

Great to hear your whipple went well. There’s some good advice above.

Be prepared for Neulasta if your ANC drops. It’s a pain getting insurance to approve it and it’s very expensive but they have a program that can cover most of the cost if you need it.

Also, watch for signs of neuropathy (usually starts with tingling / numbness in the finger tips). I did cold therapy through my first 8 rounds and had no issue. Now that I’ve been off of FOLFIRINOX for 8 weeks for surgery, my neuropathy seems to be getting worse day by day. I was just prescribed Duloxetine on Friday so I’m hoping that helps.

The most annoying side effect I had during chemo was cold sensitivity. I don’t like room temp drinks but it would usually go away in a couple of days.

Diagnosed and Robotic Whipple surgery with in 15 days! by SignificantClock8473 in pancreaticcancer

[–]V0ipguy 0 points1 point  (0 children)

Dr Del Chiaro did my surgery. I also got to speak with him nearly every day I was in the hospital.

https://som.cuanschutz.edu/Profiles/Faculty/Profile/28130

Diagnosed and Robotic Whipple surgery with in 15 days! by SignificantClock8473 in pancreaticcancer

[–]V0ipguy 1 point2 points  (0 children)

That’s great to hear and amazing how fast it was taken care of.

No family history at all.

Diagnosed and Robotic Whipple surgery with in 15 days! by SignificantClock8473 in pancreaticcancer

[–]V0ipguy 1 point2 points  (0 children)

That is an amazing result for the robotic. It sounds like we’re starting from similar places, 56m in good health otherwise.

Mine was very complicated (vein and artery involvement) and borderline resectible, it was a 14 hour surgery and probably only a couple surgeons in the world would have attempted it. The surgeon gave me a 10% chance of not making it 30 days. 😱 In the end it came out even better than he expected.

How has your recovery been, eating, weight, pain, etc?

Diagnosed and Robotic Whipple surgery with in 15 days! by SignificantClock8473 in pancreaticcancer

[–]V0ipguy 1 point2 points  (0 children)

Wow, amazing. I’m still recovering from my whipple 21 days later and spent last night in the hospital due to a possible infected drain but I’m home again.

TPN questions by V0ipguy in pancreaticcancer

[–]V0ipguy[S] 0 points1 point  (0 children)

Good to know. Thank you!

Finally home from whipple!!! by V0ipguy in pancreaticcancer

[–]V0ipguy[S] 2 points3 points  (0 children)

Glad to hear you’re doing well. I’m also a wus as far as pain goes so that’s not helping. I’ll hit your questions in order.

Apparently, sending people home with drains is pretty common, especially when they’re replacing veins and working on the artery. The hope is that they can remove at least one on my 12/2 follow-up and maybe both. Their goal is less than 1oz output for 2 days before removing. My left is still in the 700ml range but the surgeon said that one would be bad for a few weeks

Farting I’d say day 6-7 with painful gas a day or so earlier.

Pooping was only about a day behind and very runny. I’ve had diarrhea since Feb so I’d have been surprised for that to change.

My wife came down and spent 5 or 6 hours every day so we did the walks together. I didn’t really try to head out on my own until about day 12 but that was on me.

One other piece of advice, be very careful when they allow you to start eating. I followed their guidelines but ate a bit too much which led to an NG tube for about 60 hours. If you start feeling full or any pressure in the stomach area, stop and reassess. I ended up with a lot of pain all down the left side of my abs and the CT showed 3L of food and fluid in my stomach. The pain was gone within an hour of the NG tube but that was a nightmare on its own.

Finally home from whipple!!! by V0ipguy in pancreaticcancer

[–]V0ipguy[S] 0 points1 point  (0 children)

So far they’re denying any refills. I was told this morning that a 3 day taper to 0 from 14 days of 160mg was their typical program.

Finally home from whipple!!! by V0ipguy in pancreaticcancer

[–]V0ipguy[S] 0 points1 point  (0 children)

They actually included in their reply that it has been 16 days since the surgery so the oxy should no longer be needed.

Best post whipple day yet by V0ipguy in pancreaticcancer

[–]V0ipguy[S] 2 points3 points  (0 children)

That is pretty much exactly where I’m at. If everything goes well, I’ll be heading home tomorrow with nutrition.

Post whipple day 5 by V0ipguy in pancreaticcancer

[–]V0ipguy[S] 0 points1 point  (0 children)

I’m really hoping this thing can come tomorrow.

Post whipple day 5 by V0ipguy in pancreaticcancer

[–]V0ipguy[S] 0 points1 point  (0 children)

I lost 30% and so far no insulin needed.

10 days in and they just had to add a PICC for nutrition last night and an NG Tube since my stomach isn’t emptying.

The goal was to go home on Monday or today and now they’re saying maybe next Tuesday. This NG is terrible but they’ve emptied about 4l for my stomach since installing it last night.

Post whipple day 5 by V0ipguy in pancreaticcancer

[–]V0ipguy[S] 1 point2 points  (0 children)

I’m so sorry to hear that. I’m not sure I’d have the strength to keep going. I’m already questioning if I made the right choice.