Need advice: Stage 2 pancreatic cancer

Posted by drewgrebe @drewgrebe, Feb 20, 2020

I would like to talk to someone who hs has or who has a loved one that has had stage 2 a pancreatic cancer. What kind of treatment did they get and did it help. No tumors anywhere else. Took out part of pancreas. Looking to see good or bad just what prognosis was given.

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My mom was dx with stage 2b pancreatic adenocarcinoma in 2019. The gold standard these days is to start chemo and radiation upfront before the Whipple (to avoid rogue cancer cells from spreading and to shrink the tumor--for some this is important bc there is vein/artery involvement. The first line of defense is FOLFIRNOX. After 2 infusions, my mom got VERY sick. Turns out she has something called Gilbert's Syndrome which has something to do with bilirubin and it cannot break down the Irinotican in the FOLFIRNOX cocktail. After 5 weeks in the hospital and a month in rehab recovering from toxicity, she was placed on Gemzar/Abraxane which was a walk in the park compared to FOLFIRNOX. That September she had a successful Whipple and we were told they got "all the cancer they could see." It was the best case scenario. My mom is diabetic (actually dx prior to finding the tumor on the pancreas, which was found totally by accident after a GI CT for diverticulitis), but otherwise takes no Creon and lives life normally. She gets fatigued quite easily and has some residual neuropathy from chemo, but that's it. Just as she was to celebrate 3 years NED (no evidence of disease), she was told a tumor was found on her left ovary which was protruding the wall of her bladder. We were devastated. Since then, we've been told "there is stage IV and then there is stage IV and we can beat this down!" To a surgeon telling her, "We cannot do surgery, it won't make a difference, this is in your system now and we're starting you on palliative care," to "OMG I cannot believe you were told that, we are no where near you needing palliative care. You're going back on chemo, having radiation to the area and perhaps clean up surgery." Whatever the case, we are cautiously optimistic and we now this isn't a cure. Maybe she can back into remission long enough for immunotherapy to come along and cure this sticking cancer! Maybe not. My mom also contacted PanCan (a wonderful resource) and found out she is eligible for a clinical trial right at the hospital she has been being treated at! So, long story longer, here is my advice:
1) You MUST get your mom to a high-volume Cancer Center that does a TON of Whipple procedures, has skilled surgeons and oncologists who are willing to think outside the box and try anything and everything
2) Take care of yourself. You cannot pour from an empty cup. Get help for yourself. I got therapy to deal with the stress and anticipatory grief. Get on meds if you need to (no shame).
3) Have your mom (or you) call PanCan to see what clinical trials your mom may be eligible for
4) Have them do genetic testing on the tumor - there are drugs that are helping those with specific genetic mutations and having great success.
5) This will be a marathon, not a sprint. You will hear good news, bad news, confusing news, etc. One day you will be riding high from a hopeful point of view, to lowest of the low due to a wonky scan. This is normal. Give yourself grace.
6) You are not alone. You have us here on this site and there are many others, but STAY OFF THE INTERNET as a means of getting medical information. Understand that many of those statistics are over five years old and are now irrelevant.
7) Your mom is a statistic of one! There is hope.

Good luck and hang in there. It's a bumpy ride.

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@cubgirl1960

Hello- I was diagnosed with stage 2b adenocarcinoma in the head of the pancreas in May 2019 at age 58. PET scan at that time showed no other tumors. I started FOLFIRINOX chemo the next month- and had 12 treatments. After a few weeks off, I had chemo-radiation in Jan 2020. After all of this my tumor had shrunk to less than half its original size. My Whipple was scheduled for March 13,2020 ( the day the world shut down!). I had to have portal vein reconstruction during the Whipple, my pylorus and duodenum were removed at that time also (I had a lot of scar tissue in that area from previous surgeries) , and was in the hospital for 8 days by myself due to COVID. During surgery The cancer also caused me to have insulin dependent DM. In conversations with my doctors I asked about adjuvant chemo- and I did 6 treatments of Gemzar and Xeloda starting in May 2020. At surgery my tumor was re-staged at 1 (at diagnosis was 2b-3 possibly resectable). With the approval of all my doctors, I have been taking very tiny micro doses of cannabis oil concentrate since I was diagnosed. This is high CBD/low THC concentrate that I get legally with my medical card. I truly believe this has helped shrink my tumor along with the chemo and radiation. MMJ also help with nausea and some aches and pain. I realize this may not be an option to a choice for everyone, but I did want to add this info.
I am now almost 4 years out from diagnosis and almost 3 years from Whipple. Yes-I am diabetic. Yes-I have to take Creon. Yes- I am very tired after a busy day. But…I am ALIVE! I get to spend time with my now three grandchildren and last year I raised money and walked in the PANCan Purple Stride Chicago walk to help raise money. It is wonderful to be able to feel that I can participate in somehow giving back to other patients and their families going through this life changing disease.💜 Keep fighting! There is always hope- I have met a 10 year thriver of Stage 4 Pan Can and she is happily taking chemo every 3-4 weeks to be able to spend time with her family. She is my inspiration! I am adding my post-Whipple surgery notes if you want to see the final results.

Jump to this post

Your story is an inspiration

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I feel like this is my job now- to help others going through this journey and help them know that we can always have hope! The 5 year survival rate has DOUBLED in the past 10 years. This is still not enough though, and I am determined to help spread knowledge, optimism and maintain my faith in God and how He and the many prayers of people (some I don’t even know) have helped me through the past 3+ years. I am thankful everyday!

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We have stage 3, but are doing Mistletoe self injections (BelieveBig.org), Dog Dewormer, some high dose of Vit C IV's, a Rife machine, as well as Chemo Therapy, and are now gearing up to do an Oral Chemo with Radiation. Our cancer has been "stable" which we have learned is good...Compared to it Increasing!

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I was diagnosed on June 13,2022 with pancreatic cancer. I was hospitalized and had the Whipple procedure at the end of June. Made it thru surgery with no problems, pain or complications.
Started chemo one month latter. After 6 of 12 chemo sessions developed severe diarrhea and dehydration. Took a one month chemo break and one less drugs of the four I was receiving.
Back at chemo doing three drugs and doing good. Three more chemo treatments to go. Have a scan in a little Iverson a week comming up. Others gave been fine.
CA 19 -9 test keep dropping.
Was diagnosed stage 3 cause some lymph nodes were found.
Best of luck and prayers for you all.

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Here's wishing you the best as you go through your chemo.

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