r/pancreaticcancer • u/diecamcorder • 3d ago

Looking for hope after diagnosis at relatively young age

Like the title says, I think I’m just looking for some hope.

I (38F) was diagnosed with stage 3 pancreatic cancer back in May. Weirdly (or maybe not so weirdly), the diagnosis came after I had a successful Whipple surgery (negative margins all around). The initial biopsy of my tumor indicated it was precancerous, and it wasn’t until they took the tumor out and did further testing that they realized it was, in fact, cancer & had spread to quite a few local lymph nodes.

I spent most of the summer recovering from my surgery & setting myself up with doctors in my hometown & at MD Anderson. I started FOLFIRINOX on July 28 & am midway through round 3 now (pump comes out Friday). So far, the side effects have been relatively manageable. It’s not fun, but I can more or less live my life normally for now.

That said, some of the test results I’m getting back have me worried. My CA 19-9 levels were well within normal bounds back in late June (19.6), but they’ve ticked back up since started chemo (68 on Aug 11 & 66 on Aug 25). That said, the 19.6 level was a test done at MDA & the other two were done with my local doctor. I also know sometimes CA 19-9 can elevate early in chemo. I’ve also just gotten my Signatera results back (5.23 MTM/mL) & feel a bit concerned about those.

It’s all just very overwhelming. I’m not a science-minded person, and trying to parse these results feels impossible (I know I likely shouldn’t even be trying to do it on my own, but I can’t seem to help myself). Then there’s the disconnect between feeling more or less fine while I’m also actively fighting cancer. It makes it so much harder to wrap my head around the bleak outlook associated with my diagnosis. And even when I have some hope, the doubt creeps in about how much time I can realistically buy. Less than a year ago, I thought I was maybe hitting the halfway point of my life. Now it sometimes feels like I’ll be lucky to get a few more years.

Sorry for the essay. I’ve been lurking here for a while just trying to wrap my head around all of it. And today it finally felt like the right time to try posting my story (so far) & ask for any helpful advice or something, however small, to hang a bit of hope on.

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19

u/ddessert Patient (2011), Caregiver (2018), dx Stage 3, Whipple, NED 3d ago

I was diagnosed with stage 3 pancreatic adenocarcinoma cancer at age 48, 14 years ago. Similar CA19-9 (high 59). Treated at MD Anderson. Still here!

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u/diecamcorder 2d ago

Thank you so much for replying & sharing! It’s so nice to hear a success story … it feels like such a sea of darkness sometimes, so that point of light really helps 💖

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u/EstablishmentTiny292 3d ago

Those tumour marker levels are not the best indication for this cancer. They are not 100% related to pancreatic cancer. If this was the case then a diagnosis would happen with one blood test, but it doesn't. Hence why patients have CT scans every few months to check the growth. Your levels are very low, some people on here have levels in the hundres thousands

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u/diecamcorder 2d ago

Thank you for this info and dose of reality! I think I’m just in a state of constantly waiting for the other shoe to drop, so I end up obsessing over minor fluctuations.

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u/bossnacho 3d ago

In my very humble opinion, hope comes from the fact that you were diagnosed and being treated while the cancer is localized, putting you far ahead of the terrible mortality stats of pancreatic cancer, where most diagnoses come when the disease is out of control. You're responding well to Folfirinox (which had aggressive side effects for my wife), and can live normally while being treated. Every year, scientists are making great advancements in identifying what causes cancer and making drugs that fight it at the genetic source.

It's so tough, and it's not fair, but it's not hopeless. Don't let it swallow you. Nothing will prioritize your life like this. Ditch the dead weight. Love the people who love you most. Live like you've always wanted to live.

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u/diecamcorder 2d ago

Thank you so much for this perspective and for the kind words. I’m currently getting my pump taken out and having trouble stringing together sentences. But please know your comment brought me some much-needed light.

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u/tVdgirl2018 3d ago

I am so sorry you’re dealing with this. If you want to follow someone’s journey who’s also dealing with stage 3…. @pancandiaries on Instagram chronicles a persons journey. Stage 3… 2023… and currently NED.

Please don’t give up. Don’t read the statistics. You are not a statistic. You’re young… you can fight ♥️ stay strong.

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u/diecamcorder 2d ago

Thank you so much for this reply and for the recommendation! I definitely need to make “I am not a statistic” my new mantra. The fight isn’t easy, but I do thankfully have a lot of fight left in me 💖

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u/Clear_Celebration_12 3d ago

I’m so sorry you’re going through this. 

My mom had Whipple for 2B in 2016 and was NED until about a year ago when they discovered two lesions in her liver while staging a separate lung cancer diagnosis—the biopsy showed it was a pancreatic recurrence that wasn’t acting like one (low-grade and slow-growing, it had been present for a year upon comparing with a previous scan…which is very frustrating). 

Anyway, when she started chemo for the recurrence, her CA-19-9 spiked by about 60 points for the first two months of chemo before coming back down.

Have you had genetic testing done? My mom has a somatic PABL2 mutation and is responding very well to treatment tailored to that. 

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u/diecamcorder 2d ago

Thank you so, so much for sharing her story … that very much eases my mind about the CA 19-9 levels. I hope your mom is doing alright (or as alright as she can be) these days 💖

Also, yes, I did have genetic testing done. It came back positive for KRAS & APC mutations (not really sure what either of those mean though). It looks like there might be clinical trials for me to get into, but my oncologists have said that would likely come after the chemo. I’ve looked a little into what’s out there, but I only got my test results back about a week ago, so until now, I was kind of flying blind trying to find a trial that might be a good match.

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u/Creative_Stuff8422 2d ago

May I suggest looking into Immunocine.com. It has worked for pancan patients tho it is all out of pocket. But, the fact that you’ve had the whipple so it will be easy to get enough tumor sample for them to make their immune vaccine, is great. Plus, they do offer a payment plan and at your young age, I would definitely do it. Check out their website, watch their success stories and contact them. They have clinical trials going and have been fast-tracked for FDA approval. Pray you are able to do this.