1. < Pancreatic Cancer
Profile picture for Colleen Young, Connect Director
Moderator

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.

Profile picture for golfgirl1
golfgirl1 | @golfgirl1 | Apr 25 8:05am
In reply to @meflip "@golfgirl1 Hi Mary, sounds like you're path is going in right direction. I have "locally advanced"..." + (show)
Profile picture for meflip @meflip

@golfgirl1
Hi Mary, sounds like you're path is going in right direction. I have "locally advanced" PC at head of pancreas diagnosed in January of this year. Cleveland Clinic (my 2nd opinion) recommended folfirinox for 6 cycles, then reassess. My 1st opinion wanted to do surgery first.
A recent CT showed minimal shrinkage so will continue with chemo thru at least May. They haven't given me a stage at this point. There's a lot of exciting new discoveries in TRIALS. But I understand you don't do a trial and standard therapy - it's one OR the other. So in my case, I'll go as far as I can with trying to shrink tumor thru chemo. If surgery is an option that is curative, then i'll take that path. If surgery not an option, then it's another path. Wish you both God's blessings and a good outcome. Maria

Jump to this post

@meflip Thanks so much Maria, sounds similar to Lynne situation, but her tumor is in the "body" of pancreas, abutting the celiac artery, so goal is same...get thru chemo/fulfurinox for 2nd round, then early june scan and reassess for surgery (would not be Whipple, would be "distal pancreatectomy").
Prayers that you and Lynne both get to successful surgery! 🙂
Mary

REPLY
Profile picture for golfgirl1
golfgirl1 | @golfgirl1 | Apr 25 7:59am
In reply to @kakalena "@golfgirl1 Hi Mary, has anyone talked to you about the Nano-knife procedure? My tumor was on..." + (show)
Profile picture for kakalena @kakalena

@golfgirl1 Hi Mary, has anyone talked to you about the Nano-knife procedure? My tumor was on the head of pancreas with vein and artery involvement. After unsuccessful chemo (Gem/ brax), I had SBRT radiation without using metal markers. We were working towards the Nano-knife procedure which can be done without any damage to vein/artery if tumor could be down to 2 cm. or less. As it turned out, radiation shrank tumor enough to have the Whipple and so far, so good, but it's only been 4 months. Ask your doctor/s about Nano-knife if chemo doesn't work.
Prayers for you and Lynne.
Kathy

Jump to this post

@kakalena Hi Kathy thx for much for the very kind reply and info :). we did discuss NanoKnife with a renowned surgeon at Miami Cancer Center (Dr Horatio Asbun). That may be an option IF after this chemo we can get to tumor small enough for surgery. The challenge is that her tumor is in the body of pancreas, abutting the celiac artery....so IF can get to surgery it would be a "distal pancreatectomy"....
All the best of continued health and healing!

REPLY
Profile picture for casey1959
casey1959 | @casey1959 | Apr 25 7:55am
In reply to @yellie "@casey1959 Hi. My husband was prescribed Creon post operative. He did need it initially and manufacturer..." + (show)
Profile picture for yellie @yellie

@casey1959 Hi. My husband was prescribed Creon post operative. He did need it initially and manufacturer coupon helped cover it with very little out of pocket cost and was able to get reimbursed for the first script which we had to pay for. He initially needed it post op due to weight loss/ stool frequency and diarrhea after his surgery but was able to reduce the amount needed with meals after a few weeks and stopped altogether around three months after his surgery. He has maintained his weight, tolerated foods and having more regular BM with out it. He saw his surgeon at regular intervals who helped with those changes. The Creon web site has a lot of helpful information.

Jump to this post

@yellie I'm stuck trying to figure out how to obtain the coupon. I tried Creons website yet just consuming. I don't rely much on technology. Anyone have advice. Seems just wait until we see his surgeon at his post op visit.

REPLY
1 reply
Profile picture for golfgirl1
golfgirl1 | @golfgirl1 | Apr 25 7:55am
In reply to @valerina30 "@golfgirl1 hi I’m stage 3 unresectable tumor. I’m going to be trying the optune pac. My..." + (show)
Profile picture for valerina30 @valerina30

@golfgirl1 hi I’m stage 3 unresectable tumor. I’m going to be trying the optune pac. My oncologist told me about it and ordered it. I went to MD Anderson for my second opinion prior ,just to see if anything else can be done. Ask about crybolation to. It was to risky for me unfortunately . But that’s 90% effective to. Good luck

Jump to this post

@valerina30 Thanks so much :). Will research optune pac and crybolation, have heard of them
all the best!

REPLY
1 reply
Profile picture for casey1959
casey1959 | @casey1959 | Apr 25 7:53am
In reply to @suelannon "@jerryc131 My husband was diagnosed in July 2024. He never did Chemo or received any Treatment...." + (show)
Profile picture for suelannon @suelannon

@jerryc131 My husband was diagnosed in July 2024. He never did Chemo or received any Treatment. Unfortunately , he had a lot of setbacks with the Surgery but he had been a Diabetic since he was 40 and never took it seriously enough. He had Kidney Cancer 4 years before this Diagnosis and lost a Kidney. He was finally recovering from all of that when he had to have a
double Heart bypass. It took him a long while to get over that Surgery when he all of a sudden started to lose weight which then took us on the path of all of the testing before finally getting
this Diagnosis. I have to say he had a hard 6 months after the surgery but after that we had a good year of being able to go out to dinner with Friends and just really enjoy our Family. He was able to eat anything he wanted and had a good quality of Life.
Just in the last 6 weeks, things changed and he has been on a steady decline since. He has
almost stopped eating completely and lost 17 lbs in the last 3 weeks. Sleeping so much more
and has just lost interest in going out or seeing friends. He definitely perks up whenever our
sons are around.
We went to see the Oncologist yesterday and they have referred him to Hospice Care. They will be here on Monday so I am anxious to be able to get a little more support for both of us.
We have been together since we were 17 years old and Seniors in High School. We will be married 51 years this July.
We have had a good life with a lot of Ups and Downs but thankfully we can laugh about the downs which mostly happened in the first several years of Marriage. I can say that this part of the Journey together is the hardest.

Jump to this post

@suelannon I wish I could actually hug you. Just because sometimes it helps. I also was married young (15) & (16). 51 years April 12th. It's so hard to watch when the eating slows to practically nothing. Sleeping most the day. As a caregiver we just do. Our best. Sometimes they get ( snippy) my husband is dealing worthless . Not working & just being in the house isn't his style. I've asked his friends to call more often. Feel others don't quite understand what people go through with devastating illnesses. Wish you both comfort.

REPLY
1 reply
Profile picture for meflip
meflip | @meflip | Apr 24 7:52pm
In reply to @valerina30 "@golfgirl1 hi I’m stage 3 unresectable tumor. I’m going to be trying the optune pac. My..." + (show)
Profile picture for valerina30 @valerina30

@golfgirl1 hi I’m stage 3 unresectable tumor. I’m going to be trying the optune pac. My oncologist told me about it and ordered it. I went to MD Anderson for my second opinion prior ,just to see if anything else can be done. Ask about crybolation to. It was to risky for me unfortunately . But that’s 90% effective to. Good luck

Jump to this post

@valerina30 Hi, can you tell me how they determined your stage? I haven't been given one, although I am told I have a locally advanced pc. Is it just from imaging or maybe a biopsy?

REPLY
1 reply
Profile picture for meflip
meflip | @meflip | Apr 24 7:48pm
In reply to @golfgirl1 "Hi my name is Mary. Most important, God Bless you all and thanks for any feedback,..." + (show)
Profile picture for golfgirl1 @golfgirl1

Hi my name is Mary. Most important, God Bless you all and thanks for any feedback, thoughts, encouragement to come 🙂
My partner Lynne was diagnosed with PC July 2025. The tumor was local (@ 3.0 cm), no metastasis then or now (latest PET in 3/26 showed no spread). Could not have surgery immediately due to arterial involvement/proximity. She had 7 Fulfurinox treatments July - Nov 2025. Then targeted MRI radiation (5 days). Consultation with surgeon at Miami Cancer Center (Dr. Asbun). Tumor shrunk somewhat, but Unfortunately determined not enough for surgery to move forward now. So currently in 2nd round of fulfurinox (5 treatments). Early June will have scan and reassess.
Live in Southeast Florida/Boca Raton
Wondering if we're doing the right thing, seems to be right at this point, but hearing a lot about new trials and treatments (MRNA, KRAS, Optune Pak, etc); gets ones head spinning. Often struggle with whether to move to Mayo, Sloan, or Dana Farber at some point (we have Boston/MA roots.)
Thoughts/feedback welcome, thanks again!
Mary

Jump to this post

@golfgirl1
Hi Mary, sounds like you're path is going in right direction. I have "locally advanced" PC at head of pancreas diagnosed in January of this year. Cleveland Clinic (my 2nd opinion) recommended folfirinox for 6 cycles, then reassess. My 1st opinion wanted to do surgery first.
A recent CT showed minimal shrinkage so will continue with chemo thru at least May. They haven't given me a stage at this point. There's a lot of exciting new discoveries in TRIALS. But I understand you don't do a trial and standard therapy - it's one OR the other. So in my case, I'll go as far as I can with trying to shrink tumor thru chemo. If surgery is an option that is curative, then i'll take that path. If surgery not an option, then it's another path. Wish you both God's blessings and a good outcome. Maria

REPLY
1 reply
Profile picture for lexaolexa1
lexaolexa1 | @lexaolexa1 | Apr 24 5:16pm

Hello, I was diagnosed with an adenoma at the head of the pancreas in Sept. of 2021 with SMV involvement. I received 6 rounds of Folfironex, and afterwards, the tumor was resectable. The Whipple was preformed April 26, 2022, with the tumor described as being stage 1 B, no margins, and no lymph nodes. All was well until April of 2025 when a shadow was seen on a CT that looked like a mass was forming in the operative bed, betweem the SMV and SMA. At that time, the CA 19-9 had not budged from the reading, as it first appeared post Whipple, as less than 2.09, where it has remained to this day. (At diagnosis, the CA 19-9 was 320.) I also received 6 more rounds of Folfironox post Whipple.
I have receive several pet scans and cts this past year along with 2 Signatera tests, both negative, and an endoscopy. The endoscopy yielded no new information due to 'artifacts'. The original shadow has enlarged during this past year and now the 'mass' appears to involve both the SMV and SMA. The situation has been described as 'difficult' and unresectable. It is not being considered for a biopsy because of the negative blood tests as well as being my being asymptomatic.
I will be receiving another ct test next week and have an oncologist meeting shortly thereafter.
Does anyone have any advice on what to ask my oncologist? He has said that he does not want to treat me.
I'm in San Diego County CA under the care of two qualified pancreatic specialist physicians using one of the better hospitals. My case is reviewed periodically by the 'tumor board'.
Thanks!

REPLY
1 reply
Profile picture for casey1959
casey1959 | @casey1959 | Apr 24 4:11pm
In reply to @valerina30 "@golfgirl1 hi I’m stage 3 unresectable tumor. I’m going to be trying the optune pac. My..." + (show)
Profile picture for valerina30 @valerina30

@golfgirl1 hi I’m stage 3 unresectable tumor. I’m going to be trying the optune pac. My oncologist told me about it and ordered it. I went to MD Anderson for my second opinion prior ,just to see if anything else can be done. Ask about crybolation to. It was to risky for me unfortunately . But that’s 90% effective to. Good luck

Jump to this post

@valerina30 my husband was the same. Yet after 12 rounds of Chemo he got the green light to go through with the Whipple. At the time even after a few scans before hand the surgeons weren't still 100,% sure there was no involvement with the Artery & veins. They told my husband they were confident enough to move forward. On 4/13 he was operated on. 6 hrs & was a tough few days following. Margins clear & no involvement or Artery or veins. Discharged on 4/19. He also was told unresectable at the initial beginning.

REPLY
1 reply
Profile picture for kakalena
kakalena | @kakalena | Apr 24 2:09pm
In reply to @golfgirl1 "Hi my name is Mary. Most important, God Bless you all and thanks for any feedback,..." + (show)
Profile picture for golfgirl1 @golfgirl1

Hi my name is Mary. Most important, God Bless you all and thanks for any feedback, thoughts, encouragement to come 🙂
My partner Lynne was diagnosed with PC July 2025. The tumor was local (@ 3.0 cm), no metastasis then or now (latest PET in 3/26 showed no spread). Could not have surgery immediately due to arterial involvement/proximity. She had 7 Fulfurinox treatments July - Nov 2025. Then targeted MRI radiation (5 days). Consultation with surgeon at Miami Cancer Center (Dr. Asbun). Tumor shrunk somewhat, but Unfortunately determined not enough for surgery to move forward now. So currently in 2nd round of fulfurinox (5 treatments). Early June will have scan and reassess.
Live in Southeast Florida/Boca Raton
Wondering if we're doing the right thing, seems to be right at this point, but hearing a lot about new trials and treatments (MRNA, KRAS, Optune Pak, etc); gets ones head spinning. Often struggle with whether to move to Mayo, Sloan, or Dana Farber at some point (we have Boston/MA roots.)
Thoughts/feedback welcome, thanks again!
Mary

Jump to this post

@golfgirl1 Hi Mary, has anyone talked to you about the Nano-knife procedure? My tumor was on the head of pancreas with vein and artery involvement. After unsuccessful chemo (Gem/ brax), I had SBRT radiation without using metal markers. We were working towards the Nano-knife procedure which can be done without any damage to vein/artery if tumor could be down to 2 cm. or less. As it turned out, radiation shrank tumor enough to have the Whipple and so far, so good, but it's only been 4 months. Ask your doctor/s about Nano-knife if chemo doesn't work.
Prayers for you and Lynne.
Kathy

REPLY
1 reply
Please sign in or register to post a reply.