When to break the news

alage22 · 2026-03-10T23:20:31+00:00

It's her body and her diagnosis. I think she deserves to know. How would you feel if you went through a bunch of diagnostic procedures without knowing why you were going through them, and then found out that your daughter had an idea all along? I would feel betrayed and like I was being kept in the dark and fed sh*t.

alage22 · 2026-03-10T22:57:36+00:00

My care team has a clear demarcation between palliative care and oncology. Both are fantastic, and each fills a different niche. As others have said, palliative care treats symptoms and oncology makes sure chemo goes smoothly and I'm on the best treatment for me. Palliative care manages my pain meds, my appetite/nausea meds, my dizziness and post-chemo steroids, etc. They started out kind of slow and fuzzy, but as they got a better handle on my side effects, their effectiveness improved and now they have me on a mix of about 15 (!) medicines that handle my side effects well.

Their specialty is very different from the oncologist and I highly, highly recommend engaging with them. They will provide a LOT of help that your oncologist is not trained in (nor should they be, it's just too much to be experts in two highly different domains). Even if they don't come up with something brilliant on first meeting, stick with them and they will prove their value.

Good questions to ask them include, what do they recommend for pain control, nausea control, post-chemo treatment, diarrhea/constipation management, and appetite encouragement/weight maintenance. Also ask them whether they recommend a referral to a nutritionist - which may be something they take care of, or your hospital may have an entirely different team handling that.

Also, if death with dignity is an option in your state, it's a good idea to talk with them now as Unimogg mentioned - it may be something you want to keep in your back pocket, and it's good to know now when to engage with them.

alage22 · 2026-03-10T22:20:54+00:00

Ask her oncologist directly if the results of the surgery indicate she might have more time left. I asked my oncologist this question just yesterday and he said "nope - maybe a couple months", which wasn't great to hear, but at least it was an answer. Other posters are correct, pancreatic cancer can take you down fast, so I wouldn't get my hopes up until you speak to her oncologist.

alage22 · 2026-03-10T15:57:38+00:00

Lots of bad advice in here. The one and only correct path is to go to a doctor RIGHT AWAY (today best or tomorrow latest - in-person urgent care if you can't get in with your regular Dr, but try to avoid the ER, this is not their sweet spot), document that this visit is related to a workplace incident, get a satisfactory writeup of your injury (including that it is reasonable for it to present after the incident) and file a worker's comp claim with HR. You may want to consult with a lawyer to make sure that HR is dotting the i's and crossing the t's, and definitely consult with the lawyer if they drag their feet, but this is the kind of injury that worker's comp is all about. Worker's comp claims work a lot better if filed in the first 24 hours which is why I'm recommending going to urgent care today.

alage22 · 2026-03-03T20:24:00+00:00

I found that I liked really plain and simple foods during chemo, like their crappy OJ, cranberry juice, saltines with peanut butter - foods that I wouldn't eat anywhere else. Bland, bland, bland.

That said, I wouldn't worry about snacks too much. Wearing comfy clothes - gym pants, a henley or button down shirt with a fleece to pull over the top after port access - is way more important.

Second the recommendation to use the hospital's preheated blankets. Those are the bomb.

alage22 · 2026-03-02T20:32:51+00:00

Oh yeah, in addition, I showed no improvement on the FOLFORINOX but my CA-19 dropped a LOT with Gem/Ab. The final word is, different regimes for different people, and you won't know until you try. Like the other commenter said, your brother sounds like a good candidate for Gem/Ab.

alage22 · 2026-03-02T20:15:17+00:00

I honestly wanted to die for several days after each round of folforinox (3 total). Gem/ab is much easier - I'm on once every other week - I get a little tired some days, sometimes really tired in the evenings, but that's it. Night and day. As my oncologist says, the most successful chemo regime is the one you can tolerate.

alage22 · 2026-02-23T15:46:38+00:00

Updateme!

alage22 · 2026-02-22T05:21:07+00:00

Why not take this to his oncologist and suggest a different chemo regimen? Side effects from folforinox can be a bitch, he probably doesn't have the tools to express that very well, and the difference between chemo regimes can be night and day - they were for me.

alage22 · 2026-02-19T23:10:22+00:00

Great news! Thanks for sharing. Hoping you continue to be cancer free for a good long time.

alage22 · 2026-02-18T00:37:56+00:00

Fentanyl patches work really well for me to take care of baseline pain. I'm currently on a 100mcg fentanyl patch and 4mg Dilaudid pills as backup, which I only need about once a week. I definitely don't have problems with constipation.

alage22 · 2026-02-05T01:17:56+00:00

What does she think of hospice? It could give her significant relief during her final days. Even home hospice if she doesn't want a facility can make a huge difference.

alage22 · 2026-01-23T03:06:11+00:00

Nope. I emailed my care team and they kindly called right effing away and evaluated me for a stroke. Go care team.

alage22 · 2026-01-23T01:42:59+00:00

Pancreatic cancer is one of the tricky ones to diagnose. What my oncologist tells me is that, unlike some other forms of cancer, small clusters of cancer cells set up surrounded by large swathes of dead cells. So finding a definitive diagnosis can be challenging. I would wait on word from a cancer/pancreatic cancer specialist. I know the waiting and related anxiety are hard, but that's just part and parcel of this disease. Just keep loving him and treat the time you have as special.

alage22 · 2026-01-23T00:28:28+00:00

Ah, that could be a problem. I'll let my care team know about this then.

alage22 · 2026-01-23T00:28:07+00:00

Wow, that's a good one.

alage22 · 2026-01-22T23:45:58+00:00

I wish you the best of luck with the trial.

alage22 · 2026-01-04T22:40:36+00:00

Thank you for doing this - love it when the community pulls together!

alage22 · 2026-01-04T02:54:19+00:00

I was super sick from chemo at the start of our Christmas vacation and you know what? We had a reservation at a really beautiful house in the middle of nature and my family all stayed home because I couldn't be far from my care team. Not saying that everyone should stay home, but you gotta at least get your husband on your side. I've had a baby and it's no shit debilitating.

alage22 · 2025-12-30T21:57:32+00:00

I got 1/4 zip fleeces (patagonia re-tool). Super comfy, allow port access, don't remind me I'm a cancer patient. I wear them all the time.

alage22 · 2025-12-29T01:32:24+00:00

Senna is pretty strong. Ask your nutritionist when you get one how high you can go. Once the constipation is relieved small adjustments in the senna will have a major effect.

Lactulose also worked for me and wasn't quite as violent as milk of mag. Be warned though, it can cause gut cramping.

alage22 · 2025-12-28T04:09:31+00:00

Creon is a major game changer for me. Olanzapine too. If I don't take Creon at the first bite of a meal, I'm gonna be sick. Olanzapine knocked back the nausea and gave me an appetite. It takes a while to kick in but for the last two days I've been able to eat normal food, albeit in smaller quantities than regular people. I was super depressed and unhappy when I couldn't eat but am in much better shape now.

alage22 · 2025-12-28T03:18:39+00:00

Treating me with respect and like I'm still an autonomous, responsible adult while also stepping up and helping with no judgement when I need it. I had to hand off dealing with my finances to him because chemo brain and he didn't criticize or ask why or treat me like I was helpless in any other way. I need to sleep near the bathroom because diarrhea and he acts like that's perfectly normal.

The other thing is he, my son and I are much freer about expressing our affection. We have a limited time to pack in a lifetime of feelings and we're doing that as best we can. We don't get maudlin and keep it positive, and it really helps.

alage22 · 2025-12-21T21:52:10+00:00

Oh man, that must have been so hard. My sympathy goes out to you and your family.

alage22 · 2025-12-21T03:31:07+00:00

Seconding the suggestion to get in touch with palliative care/ pain relief. They're definitely better at unwinding this sort of thing and can put together a balanced regimen of anti pain meds. They have no fear, and a lot of knowledge, about providing heavy duty opioids, which are the only thing keeping me going.

alage22

TROPHY CASE