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

@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.

@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

@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?

@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.

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

@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.

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

@casey1959 I think I just called and then a rep called me back, they sent a coupon by email which I printed and gave it to pharmacy. Then for the refund she sent a link because I had a hard time finding it on the site. Once accessed I had to complete and submit with a copy of the receipt. The number phone number on his savings card is 1-844-ONCREON. They were really helpful. Hope this helps it definitely helped my husband those first few months after his Whipple.