Pancreatic Cancer Group: Introduce yourself and connect with others

My opinion - not a medical professional.

Neither of those medical facilities have been mentioned in any of the thousands of threads I have read related to pancreatic cancer. I don't know if they are considered as competent as MSKCC or Mayo Rochester or MD Anderson.

If it were me, I would relocate and live near a center of excellence - and have all chemo, radiation and surgery there.

Moffitt is listed by NPF as a pancreatic cancer CoE, and by the NCI as a Comprehensive Cancer Center.

If Dr. Fleming is the surgeon at Moffitt, he appears to have trained with Dr. Matthew Katz at MD Anderson, whom I have met and understand to be top-notch. Friend of a friend also had a perfect pancreatic cancer surgery outcome from Dr. Hodul at Moffitt. Other friends and relatives have also had very good outcomes there.

As far as open versus lap, my Whipple surgeon does both but prefers open, both for the visibility and accessibility, as well as the shorter duration and time under anesthesia. Mine was open, hurt for a couple days, and left one real nice scar (4-5" midline) and a tiny dot from the drain. No complications other than digestive/dietary aspects learning to balance insulin/sugar and enzymes/fats, and keeping the house stocked with toilet paper. 😉

Delay is also a factor to consider. If you're already "in" with a surgeon who is willing to operate right away, you could probably have the surgery there before you could even get an appointment elsewhere. If you've only had 1-2 rounds of chemo, your surgeon *might* be willing to shorten or waive the 30-day washout required for patients who have typically had 8-12 rounds of chemo before surgery. It's just a guess and a question to ask, but you would likely have less chemo drug accumulated in your system and better blood counts (needed for safe surgery and proper recovery) than someone who's had the full complement.

Resolving the opinion about chemo first or surgery first seems compelling. Third opinion asap to address this issue seems like a very high priority. I was not an operative candidate to start with, but if I was in the situation you are in I would feel it was compelling to know the pluses and minuses of chemo up front.

Saying a prayer for you, for wisdom to make the best decision.

Thank you, katiegrace. That is exactly what I need at this moment! It warmed my heart to read your post❤️
With much appreciation,
Marilyn

Hi. Disclaimer: I'm one of the less-informed persons on this part of the Mayo site, and the following is anecdotal only.

I had an open Whipple on 10-5-23. I was in the hospital for 8 days (they kept me an extra day bc I live alone and lack nearby helpers -- wanted to make sure that I felt strong, felt confident about moving around and heating food, etc.).

I had relatively little pain after about 14 days, and I feel pretty good at this point (25 days after surgery); I think I would feel very good if not for one atypical factor (I have a tube in my stomach to help anchor it -- the surgeon had intended to fix my hiatal hernia as well but had to abandon that plan). To date there have been no complications (knock wood), and I'm pretty sure that radiation and more chemo are in my future, but I won't know for sure until I see my onc next week.

I'm almost 62; I'm in good (not great) health apart from my pc -- no other health problems, but I'm sedentary and a bit pudgy (and working to change that); and, I was diagnosed on 2-15-23 and had 8 rounds of Folfirinox between 4-4-23 and 8-2-23, if any of this helps.

I wish you well as you make your decision and navigate all of this. It's overwhelming, to say the least.

Hello!
I have been using this wonderful site for a little while now. I am so grateful to be able to share my worries as well as be able to provide any support that I can offer in terms of what I have been through personally and my hope's for all of us for a bright and cancer free future.
I go by lilliejane2 here,
But my real name is Joy.
Lillie Jane was my great great grandmother, traveling over oceans of water to come from Europe and settle in
Ulster county where there was nothing at that time...late 1600s..
And making a home there! A home from nothing to a solid life.
I love that about her, and about my great great grandfather, and all of the generations of my family. We were make do people, and that was our strength.
And so it is with me. I am an artist and writer
And love to create things out of nothing.
My home is decorated with old things like nail kegs, and maple syrup buckets and crocks and candles. I am retired now, but worked in a NewYork state park until retirement. I led hikes, taught classes, planned events, did artwork for flyers, helped patrons.
A lovely park, with a beautiful view in many directions.
I was cancer free for 20 months, with a confusing resurgence in late september. I am now treating every other week with a modified 5FU treatment. Nausea and fatigue are difficult, but I keep trying new things to keep nausea at bay.
Cancer is not the first tough thing I have had to overcome. I've had lyme disease for about 20 years, and about 5 years ago broke my hip at work. Lyme was tough. I still have it, and some coinfections that go with it, and find that herbal protocols work the best for me.
I try to research new methods for healing. Some work, some dont.
But it's really important to keep trying. Keep using your many strengths to keep fighting and keep succeeding. And keep exercising if you can..
Weight training and aerobics work best for me. I use 5 and 10 pound weighs and try to work out 3 times a week with weights and do aerobics the other days.
I find that exercise not only strengthens your body, but takes me away from thinking about cancer.
What I really want to say in my long winded post here, is please do whatever you can to find and keep yourself during your struggle with a monster that wants to steal from you.
Keep fighting for you and who you will become during this and in your coming long years of wonderful life ahead. I know it may seem a daunting task and i know not feeling good and worry rob you of all but the basics.
I'm trying to see life beyond cancer. Little by little, shine and thrive.
My best wishes to all of us going through this.
We are a force alone and together. Sorry for having so many platitudes. I only mean to share hope.

Thanks for sharing your story. I find it inspiring. Hope your treatment goes well for you.

It's been over a yr since my last MRI. I'm having trouble getting my dr to order another MRI. The radiologist recommended that I have one every 6 months. Maybe I need to consult with another Dr. I live near MD Anderson hospital in Houston TX. Does anyone know of a good Dr there that specializes in the pancreas and liver? Any info would be appreciated. Thanks

Hi

I have stage 4 PDAC. My bowel movements and gas vary quite a bit day to day but what is fairly constant is diarrhoea. I have found gastro-stop hasn’t really helped and for a few nights this week I had to get up 4 times to pass wind (I could have driven a wind turbine!). I got up so as to avoid waking up my wife..

I found that Gasbusters (great name) helped and managed to get a reasonable night’s sleep last night.