[geofffox]

I am a pancreatic cancer survivor. It is considered incurable in 2019 and I'm here because of a 1930s era surgery called a Whipple procedure. Around 9% survive five years or more -- a number that hasn't really changed.

In a belt plus suspenders move I underwent 2 rounds (six infusions per round) of chemo plus 28 consecutive weekdays of radiation after surgery. All my doctors are amazed at my recovery, a few saying the best they've seen (though it came with diabetes and a different digestive pathway).

Chemo was awful. Mine came with a bag of steroids first to mask the effects for a few days. I scheduled my sessions for Thursday, knowing it wouldn't hit me until Friday night. One Saturday I slept around 20 hours.

However, by the end we had figured out how to minimize the effect of the chemo. I needed my wife who watched me diligently. Cancer is not a one person job! She made sure every time I opened my eyes I stayed hydrated and ate something.

Chemo should have gotten worse. It actually got easier.

My cancer never caused me pain. The treatment... that's another story. I left the hospital with my belly held together by 16 staples.

[jcims]

Trying to help my wife through chemo now, and the staying hydrated and eating something is kicking our butts. Her oncologist believes that her nausea is due to directly to disease progression and it's relentless.

We're now on a regimen of phenergen every 6 hours but that just prevents cyclic nausea from occurring AND it knocks her out to where she's sleeping at least 20 hrs a day. Then when she wakes up she can only eat a little bit or she'll throw it back up. For hydration we finally just got home health giving her a liter twice a week plus a liter at chemo once a week.

She just recently over the past day or two has started to be able to hold a bit more down, but she's essentially got a form of PTSD from throwing up 5-10 times a day for 2-3 months.

Congrats to you on beating it man, especially pancreatic. This stuff really sucks.

[DoreenMichele]

Dehydration itself can make a person nauseous.

You don't have to take anything orally to treat dehydration. A bath or shower can help with hydration at times when she can't stand to take anything orally.

Dehydration isn't always as simple as a lack of fluids. It can also be impacted by a lack of electrolytes and inadequate fat.

So it may help to add salt to the bath. Table salt can be problematic for someone in frail health because of the additives. Sea salt, kosher salt or canning and pickling salt won't have those additives. You can probably find the latter two readily at a local grocery store. Good sea salt can be ordered online.

If fluids and electrolytes are insufficient and you think she may need more fat, this can also be remedied without giving her anything by mouth.

Coconut oil is high in medium chain triglycerides. These can be used directly by the body without being broken down via digestion, so the body can absorb it if it is applied topically (to the skin).

Coconut oil has a long history of being medically recommended by the medical establishment for people with serious gut issues, such as folks being treated for stomach cancer.

Don't overdo it though because it can promote nausea and diarrhea, especially when taken in large quantities. You want to do small amounts regularly so the body can handle it, not start with a tablespoon of oil at a time. That will not go happy places.

Coconut oil is a little on the sweet side, so some people don't like cooking with it because of how it impacts flavor. As an alternative, butter is a decent source of medium chain triglycerides.

Clarifying butter to make ghee can remove elements that some people don't tolerate well. This can be helpful to people in frail health as an alternative to oils they aren't tolerating well while sick.

[jcims]

Hey the coconut oil suggestion is awesome, thank you so much! I'll definitely look at getting some quality oil and adding it to our regimen. I tinkered with MCT oils and whatnot in the past for my own health and have definitely 'greased the chute' by accident lol.

Totally agree on the side effects of dehydration. I could see the cycle happening over the course of a week or two and we'd end up in the ER (8 times in the last four months now). We've finally got her set up with a port and have home health services coming by mondays and fridays with hydration (and labs). Then she gets a bit more during weekly chemo on Weds. We're only a week into it and it is already showing benefit.

Thanks again for the suggestions!

[DoreenMichele]

Keep an eye on the port. If they aren't kept adequately clean and end up infected, it's ugly from what I gather.

Best.

[jcims]

Yep. There's a whole protocol that the nursing staff has to do when they 'access' (aka stick) it. Extra disinfectant, both my wife and the nurse wear a mask, then an adhesive cover applied right after the catheter is put in.

The way it was described is that the port doesn't have an immune system, so infection can camp out there. They said that if she got any kind of bacterial infection anywhere they may need to remove it because the infection can spread there and hang out.

That said, she's super stoked to have it (finally). My wife's arm's look like she's the world's worst junkie. Giant bruises up and down both because she's always been hard to get started with standard IVs and they've wrecked the veins in both arms. :/

[DoreenMichele]

Yikes! Yes, a port can be a huge improvement over being constantly jabbed and is often spoken of glowingly by patients who finally get them.

(Insert Borg jokes, if that doesn't offend. We made such jokes when I was taking care of a relative with cancer post-surgery with all the drainage tubes and what not. It helped put the kids at ease a bit.)

[athriren]

Hang in there, one stranger to another.

[nradov]

Humans can't absorb any significant amount of water through the skin in a bath or shower. If the shower raises the bathroom humidity level enough the patient might breathe in a tiny amount of water but it's not enough to matter.

[DoreenMichele]

That really doesn't fit with my experience. Granted, I have a condition known to cause very bad aquagenic wrinkling, so I likely absorb water better through the skin than most people. But I know someone who doesn't have the same condition who was able to mitigate dehydration with soaking in a tub when they were too nauseous to take anything orally.

The OP's wife has a port and is currently getting fluids that way. He's expressed zero interest in that portion of my remark. I don't see much point in arguing this.

[Lordarminius]

> You don't have to take anything orally to treat dehydration. A bath or shower can help with hydration at times when she can't stand to take anything orally. Dehydration isn't always as simple as a lack of fluids. It can also be impacted by a lack of electrolytes and inadequate fat....

Big No

[bmurphy1976]

Serious question: have you tried marijuana? I always figured if I ever ended up in this kind of situation that would be the first thing I would try to help me eat.

[jcims]

Yep. We just got her a medical card. She’s pretty old school, thinks its all bullshit, tried it once and said it gave her a headache and I haven’t been able to get her to try it again. :/

[ddingus]

My wife suffers nausea. It is pretty extreme.

There are different forms of marijuana. We tried a few. It took a few attempts to get one that worked.

If she is able, try the different forms. Edible, topical, etc...

One that worked early on was simple. Heat it for a half hour at 235 degrees F. This converts the THC to its active form.

That raw plant material, ground fine and put into empty capsules worked and was easy to consume.

We had to titrate and get it to a modest, but effective dose.

She is vaporizing now. But that edible capsule got her going. She seemed to need to feel it work to overcome displeasure associated with consuming it.

The mental effects are a PITA, but I saw her ability to function improve rapidly.

Good luck with her. I feel your struggle.

[jcims]

This is great thank you! Do you recall how you managed dosage with the capsules? Also with vaporizing does she use a dry herb vape or concentrate/oil/pen? I’m nervous about giving her a coughing fit.

[ddingus]

Dosing is a mess. Here is my advice:

Start from good bud. Highest strength / weight ratio.

You can get different sized capsules from GNC or similar stores.

A given raw plant will be similar by weight, but does vary some.

When you bake it, go until it is crunchy dry. Can be an hour, but watch temp. At 250, THC boils off into the air. I used an oven thermometer. Preheat, until you see 235, then put your stuff in there.

I used foil in a shallow pan, and foil to cover it.

Then fine grind when done. I used a good coffee grinder.

You can test what you did by literally dipping your finger into the powder and licking it off. You will get a noticable buzz. That means it will work.

Get one of those little scales. And weigh what you have and make portions.

More in a bit.

Ok, back. Had a kid crisis to manage.

Fill capsules from a portion without packing down. They sell little jigs that hold the capsules for you to just scrape it in.

Close them up, and you have doses.

Then, someone has to take one. They take 30 minutes or so to hit, and can last for hours.

Titrate from there. It is experimental, and best done on days where you have no commits and do not need to go out.

The other simple thing you can do with activated plant material is make simple edibles. No bake cookies, hard candy, etc...

Just toss the powder in and mix well.

A mostly sativa plant is a head effect that leaves a person with energy, will remain awake generally. Indica is more of a body effect, and it is sleepy type.

Mine prefers sativa because after mental adjustment and tolerance, she will still be active. We reserve indica for can't sleep nights.

You can research these things online. I did and learned a ton.

I tended to sample what I made as I do not use the stuff at all, but do want to know what it is capable of. Truth is, a little goes a long way for us not sick or hurting people.

But for sick or hurting people, it takes more. Just know that.

Be careful, be clean, don't judge, try to have fun, be positive. If it works for her, this is a special thing you can do, and it is just nice, human.

Made our lives much better. This stuff is a mood amplifier. If you want it to be good, it tends to be.

Every so often, I will have some and enjoy a meal we cook together, movie, music. Those are nice times we look forward to.

[ddingus]

We are concerned about the pens. People are cutting it with toxic crap.

A smoke vaporizer works great. Fill the bag and take sips.

Hard to not cough. If coughs are not OK, try edibles or tinctures.

I left you my home edible tips.

Tinctures are hard to make well. Buy those if you can where you live.

[loopbit]

Leukaemia survivor here... It might be a stupid question and everyone is different, but have you tried fresh fruit and ginger ale?

I went through six months where that was all I could eat/drink. Another patient in the ward suggested ginger ale and it was a surprise (had never drank it before... or since).

Nausea got so bad that even thinking about it (for example when a doctor asked) would trigger throwing up so I get what you mean about PTSD.

All my best wishes for you both.

[jcims]

Not stupid at all!! For a while apple slices and peanut butter were a staple but she throws that up regularly now. Blueberries are still good if mixed with something, a little watermelon.

Haven’t tried ginger ale, but will pick some up today. She says she doesn’t like it but we’ll give it a shot. Thanks for the suggestion!

[magic_beans]

Fresh ginger tea (using a finger length of whole ginger root, minced) works really, REALLY well for nausea.

[anon91831837]

A friend of mine had a Whipple procedure but it ruined his quality of life (he couldn't eat almost anything) and he died not long after. He wasn't even into his mid-40's, CMU alumnus and worked on XEmacs.

[odiroot]

Congratulations!

My father unfortunately passed away from the same cancer. 6 months after the diagnosis, having already done 6/8 chemo infusions. His liver was giving up by then. He also went from nearly 90kg to around 42kg in the end.

It is really a terrible cancer. He didn't have any symptoms until the year before his death. By then it was stage 4 already.

I'm abstaining from alcohol since then.

[copperx]

Does alcohol intake increase pancreatic cancer risk?

[nugget]

My understanding is that all types of alcohol, except for red wine (in moderation), mildly increase cancer risk.

[colordrops]

Considering your cancer never caused any pain, how did you find out about it?

[tialaramex]

Not the OP but I had Hodgkins Lymphoma and I was like:

"Hi, I noticed I have this weird lump. This is a lymph node right? And those are supposed to swell up if I'm ill but then go away? Well this lump is two weeks old." - no pain, just I had noticed a lump and I knew that mysterious lumps need to be reported for diagnosis.

I'm told that probably the first person who'd seen Hodgkins before went "Oh, Hodgkins" but of course they didn't say so - I spent most of the next week or two worrying I'd wasted their time with nothing. It took maybe a few weeks, including a needle biopsy and blood tests before somebody actually formally told me I definitely had cancer and that they intended to begin fixing that immediately could I come in the next day to begin chemo?

Last year (so almost twenty years after I had Hodgkins) I thought I'd detected a new lump and that I was also experiencing peripheral neuropathy (finger nerves not working as expected) so I went urgently to my GP. Still no pain. The GP felt the lump, said "That's a sweat gland, they do that" and I realised later the neuropathy was from holding my mouse and keyboard in a bad way, it went away when I stopped. They did find a new lump in my neck (in hindsight I can't believe they could see it but I'd never noticed, I guess I really don't look at mirrors) but it wasn't dangerous although they did a bunch of tests just in case because after all I have a history.

A few people with Hodgkins report pain when drinking (alcohol). It's unclear why that happens, but most have no pain until _very late_. If you wait until the lump hurts you're probably going to die. In other cancers it will vary, obviously if there's a lump in an internal organ you can't necessarily feel that, and in some cases by the time you can feel a lump you're screwed even if it doesn't hurt.

[Engineering-MD]

Pancreatic cancer often presents with painless jaundice. The cancer causes a mass which presses on the common bile duct (the bile drainage from the liver), preventing it from being excreted.