Pancreatic Cancer Group: Introduce yourself and connect with others

@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

@golfgirl1 When the tumor impacts nearby arteries and veins, it can make treatment more challenging. So, your plan sounds great to me. You can always pursue other opinions later if you feel they are necessary. There are a lot of promising treatments on the horizon. It's exciting. I believe staying positive mentally also has positive impacts physically. Please keep us posted on your journey ok? We all learn from each other. Thanks.

@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.

@valerina30 What is the optune pac? I never heard of it. Thanks.

@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

@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.

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!

@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

@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?