Pancreatic Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 3, 2019

Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Pull up a chair. Let's start with introductions.

When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

mayoconnectuser1 | @mayoconnectuser1 | Oct 29, 2023

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.

markymarkfl | @markymarkfl | Oct 29, 2023

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.

gardenlady1116 | @gardenlady1116 | Oct 29, 2023

In reply to @mbcfl "I meant to ask you since it sounds like you have had both open and robotic..." + (show)

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.

katiegrace | @katiegrace | Oct 29, 2023

In reply to @mbcfl "Hello, I just joined this blog and find it to be extremely helpful. I am have..." + (show)

@mbcfl

Hello, I just joined this blog and find it to be extremely helpful. I am have been very fortunate in how my stage one pancreatic cancer was diagnosed. In August 2023, I had an unrelated intestinal surgery and three weeks later I developed a fever and pain. So I had a CT scan September 11, which showed an abscess from the prior surgery. It also showed the presence of a 14 mm pancreatic tumor in the neck of the pancreas. Follow up CT on 9/13/23 & MRI imaging 09/26/23 showed the 1.4 cm lesion was totally contained without vascular involvement. The recommendation was neoAdjunctive therapy followed by surgery. I was started on Gemzar/ Abraxine , 3 wks on, 1 wk off, starting 9/29/23 where I am currently residing in Cincinnati Ohio.
We are actually Florida residents, so after completion of the first chemo cycle, flew down to Tampa for a second opinion at the Moffitt’s Cancer care center and was seen by their surgical and medical oncologist on October 18, 2023. This was the day after they repeated lab work, did another CT scan and pet scan. The pet scan was negative, but the CT scan now showed that there was contact between the lesion, measured ant 1.8 cm and branching was less than 180 degrees. So in just 3 weeks, this was a new finding. But the cancer was still contained in the pancreatic neck.
My Ca 19-9 was initially 345 on 9/13/23, then 575 on 9/29/23 in Cincinnati. Mayo measured it on 10/17 as 745.
My medical oncologist in Cincinnati repeated it yesterday. His thinking is if it is not going in the right direction to either change chemo to Folfirinox , which would increase chemotherapy duration to mid December prior to next surgical consult at Moffitt. Which would delay the surgery until at least mid- late January.
The other option is to discontinue chemo now and wait the required four + weeks and proceed with surgery, which would be around late November. The tumor is located in the neck of the pancreas, and directly underneath lays an intersection of blood vessels. Moffitt has already informed me if I stick to the current plan, they would repeat the CT in December to see IF I STILL AM a surgical candidate. I NEED TO BE A SURGICAL CANDIDATE!!. So to me, it seems my best option is to stop the chemo and get the surgery done ASAP. The surgical oncologist at Tampa is rated extremely highly. He has been doing the procedures for 20+ years. However, he only does an open approach. My surgical oncologist here in Cincinnati is younger and has 8-9 yrs of experience, He seems very knowledgeable and well respected. He says he does 52 pancreatic surgeries per year. And he would do it robotically. According to Pan Can , University of Cincinnati performs 150 pancreatic cancer surgeries on an annual basis. I am sure it is much higher at Moffitt but have been unclear on getting exact numbers. According to the Moffitt website, they claim for stage one they can increase the survival percentage from 40% to 60%.

So my questions for this group are the following:
1. Opinions - regarding rather than trying the Folfirinox , which were delay surgery until mid or late January, IF I am still considered resectable by then,
my thinking is to ask for surgery now. I also had started my second cycle with my first treatment yesterday of Gemzar/Abraxane , I suppose I would still need to wait four weeks before surgery. But would need to check with my medical and surgical oncologist about that, I guess.
My hesitation about trying the FOLFIRINOX is I know it is associated with a lot more toxicity, which would make it harder for me to regain my strength to get ready for a long eight hours arduous surgery.
2. My other question is regarding where to have the surgery done. Opinions, please, if I would be better off having it at Moffitt, which is a high-volume pancreatic cancer center, performed by a highly rated pancreatic cancer specialist surgical oncologist, even though he only performs open procedures.
The other option would be to have it done at the University of Cincinnati, with the younger surgical oncologist, who performs 52 robotic pancreatic surgeries per year. So he must do roughly 1/3 of all the surgeries at that center.
Any comments in a timely fashion would be much appreciated as my medical oncologist will be calling me on Monday with the latest CA, 19/9 results. Even if it has decreased, I don’t think that would affect my desire to have the surgery done ASAP. I have read online where you can go from stage one to stage four in a matter of months.
Any comments would be greatly appreciated, thank you!

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

mbcfl | @mbcfl | Oct 29, 2023

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

jk77 | @jk77 | Oct 30, 2023

In reply to @mbcfl "I meant to ask you since it sounds like you have had both open and robotic..." + (show)

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.

lilliejane2 | @lilliejane2 | Oct 31, 2023

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.

gardenlady1116 | @gardenlady1116 | Oct 31, 2023

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

sofee2022 | @sofee2022 | Jan 3 5:46pm

In reply to @colleenyoung "Hi @sofee2022, I can see you're very worried what these cysts on your pancreas and liver..." + (show)

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

Peter S (Aussie) | @spicerpa | Jan 4 2:26pm

In reply to @cindee60 "Hello, I am a caregiver for my husband Who has been recently diagnosed with pancreatic cancer...." + (show)

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.

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