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r/pancreaticcancer

▲ 45 r/pancreaticcancer

Thank you

My mom passed away this morning after battling with this horrible disease for more than two years. I first started reading this sub when she was diagnosed in June 2024 for advice about how to support her, information on how to interpret medical information, ideas for what questions to ask doctors and what treatments to seek, and stories to give me some hope and sense of optimism, and found all of those things at various times. As time went on and she got sicker, and the burdens of being her caregiver grew heavier, a lot of people here made it easier to bear them without even knowing it, because I almost only ever came as a lurker before. I want to thank everyone for sharing their experiences and feelings. I miss my mom already, but she lived long enough to get her affairs in order, spend more quality time with her family, and see me meet and marry my wife, and I am grateful for those things. Thank you for helping with one of the most difficult journeys I've ever been on.

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u/Xeynon — 3 days ago
▲ 3 r/pancreaticcancer

Help

I’m 30 yrs old and my mom was diagnosed last week. We’re still in the hospital as of today. She had an EDG procedure last week but due to some complications with her anatomy, they were unsuccessful with a biopsy. She has also had a biliary drain placed which is causing her lots of pain. They plan to try another EDG procedure within the next few days and have also sent off her labs for a Guardant 360 test. It feels like the doctors are using her as a lab dummy and we’re not getting much out of them. What ways can I be supportive and how best can I advocate for her? I am so tired of watching my mom live in pain.

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u/No-Contribution3640 — 3 days ago
▲ 11 r/pancreaticcancer

Dad has changed

I’ve posted on here a few times and I’m always grateful for people sharing their experiences/ advice with me.

When my dad was first diagnosed back in August this year, he was noble, brave and so loving and open to affection. He was still laughing. We were crying together, having really heavy conversations and I had never felt so bonded to him even though we were incredibly close already. He was walking and playing table tennis and cleaning the house etc.

This version of him lasted a month or so. These past 2/3 weeks he’s virtually a shell of himself. He pretty much stays in bed all day. He sometimes gets up and sits up but he sort of has to sleep/ meditate the pain away at almost all times. He’s cried hysterically to be about the pain. He’s wished for death. He is starting to reject attention, affection and company. It’s so sad seeing him change like this. He goes down to London tomorrow for 8 weeks to start the RAS303 trial but we don’t even know what group he’s in yet or if he even has the energy to get treatment at all.

I wonder if anyone has had a similar experience. I expected that even when he was really sick and near the end he would still have the capacity to love and cuddle and give me advice and tell me all he wants for my future etc. I thought I’d be able to sit with him and watch tv and laugh and cheer him up. I guess that I was naive. I’m glad we had some tough conversations early. That would be my advice to anyone going through this. Get the hard conversations and the sentimental stuff out the way when you can because before you know it they might not have the energy to be themselves. I’m not trying to scare anyone. I just wish I had gotten everything out of him while I could.

Also if anyone has any suggestions about pain management. It’s at the point where we’re completely out of his depths and it’s changed him completely. I also wonder if anyone has ever been in his position. What does he really want. Is he turning my affection away as to protect me from this version of him or does he really just need to be alone. I feel so guilty leaving him in his room all day. But every time I try to make contact he makes an excuse or says he’s really sore and needs to be alone. Thanks everyone x

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u/Reasonable_Day_1227 — 4 days ago
▲ 8 r/pancreaticcancer

Survey: Experiences with Bile Drains (PTBD Catheters)

[Posted with Approval from Mods]

Hello!

I am an undergraduate student majoring in biomedical engineering, currently working on my final year project, which is to improve current biliary drainage systems (biliary catheter, stent, etc).

I want to better understand the experience of living with a bile drain (specifically the PTBD catheter) and the problems associated with it.

If you are living with this catheter, or have previously lived with one (or are the caregiver for someone with one), could you please take some time to fill out my survey: https://forms.gle/8ySfsyxPpSXLWQMJA

It will not collect any identifiable information.

Thank you so much! I really appreciate it!

u/peppoooooo — 4 days ago
▲ 57 r/pancreaticcancer

It is Day 345 living with cancer, and fighting to live is tiring.

It is Day 345 living with cancer, and fighting to live is tiring.

Earlier this week, I was offered a slot in a clinical trial.

I feel enormous gratitude, but getting to this point took more out of me than I realized.

There is the physical part: chemo two weeks on and one week off.

There is the aftermath, when your body simply stops working the way it is supposed to work.

Then there is the mental part, when you desperately want one ordinary day without thinking about your mortality.

Cancer gives you both a curse and a gift: a life shot clock that constantly reminds you that you are human.

The exhaustion comes from carrying all of those things at once while continually preparing for an unknown future.

Now comes a third medical center, a clinical trial, a new city, new oncology staff, unfamiliar language about cycles and treatment schedules, and a targeted therapy aimed directly at my cancer.

It feels a little like starting a new job and onboarding yourself from scratch, except the job is to stay alive.

Along this journey, people have told me about loved ones who were diagnosed around the same time I was diagnosed and who are no longer here.

I hear those stories and carry them… from Patrick Swayze to Steve Jobs to RGB to Randy Pausch to people recently diagnosed with cancer.

I simply refuse to concede to cancer.

I have not shared that I tend to walk into infusion centers and medical centers alone.

There is something important to me about making my own decisions, listening carefully to what my body is telling me, studying the signals I am receiving, and paying equal attention to the signals I am not receiving.

Because I sometimes wonder, if I concede an inch, will I eventually concede a foot?

And if I concede a foot, will I someday concede a mile?

So I keep moving.

Today my body hurts.

Southern California feels unreasonably hot in October at nearly 105 degrees.

Yet I drove 20 minutes for a cup of coffee that I plan to enjoy slowly for at least an hour.

On the days when I do not have Iris with me, I am alone, my mind can spin, but I reflect, calculate, worry, plan and proactively search for the next opening.

Cancer is no joke.

In less than a year, my body has moved from roughly 180 pounds to 125 pounds and back to around 165 pounds.

Some days I look in the mirror and genuinely wonder what exactly is happening inside me.

I am grateful, yet exhausted, but equally hopeful.

Psalm 23:4 says, “Though I walk through the valley of the shadow of death, I will fear no evil.”

The important word for me today is “walk.”

The verse does not say we understand the valley.

It does not promise that the valley will be painless.

It simply reminds me that the valley is something we move through.

So that is what I am doing… walking.

Sometimes confidently, other times painfully with absolutely no idea where the path leads.

Thank you for the prayers, good vibes, thought, etc.

[…]

To read Day 1 living with cancer, please visit LinkedIn.com/in/angelcruzado

u/Square_Intention_794 — 10 days ago
▲ 7 r/pancreaticcancer

Dad (70) Starting mFolfirinox next week.

He’s only 108 pounds. Any advice or tips for him and how to best stay on top of side effects? Which days are the worst/which days are better?

Got him an iPad, headphones, heated blanket, and mitts and socks for cold therapy. Will he want to eat anything?

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u/Bulky-Lack2975 — 11 days ago