fuck cancer

through the medium of shitty grammar, obv

Found out yesterday that mother in-law likely has pancreatic cancer.

So this just happened over here. Mother-in-law's doctor was speaking based on a CT Scan and observable symptoms, but said she thinks it is stage 4. MRI and biopsy tomorrow will confirm for sure. I kind of feel like no doctor would say this preliminarily unless it was already semi-definitive (the dr was speaking to my wife's sister, not my mother-in-law herself, to be clear).

Obv wife and I will be heading to Boston within the next couple of days.

WTF.

damn Jon

seriously
i'm sorry
hang in there, friend -- all hojo all the time

Good idea. Will endeavor to not crack up, see both sides, bend brain and throw off mental chains. May have to go against brief and try to live life in one day though.

That's heavy, Jon. I'm so sorry.

All the best to you Jon and to EZ & ENBB too. This shit is fucked up.

I could use some extra strength but only so I can pass it on to my wife and her sister tbrr

don't forget to keep some for yourself -- you're a person too!

otm

damn Jon, wishing you the best

xpost i am naturally selfish to a sufficient extent that I will do that, believe me.

At least Boston area is pretty top notch for this kind of thing. I guess it is not crazy to predict that treatment goals will be palliative more than anything else :(

ugh, sorry to hear that Jon.

xpost yeah stage 4 is rough

you've still got a long road aheead but I will float this suggestion early, just to put it out there for later on; if you can get your hands on a w33d vaporiser it can really help with appetite, nausea, and associated side effects when things get rough

my husband's uncle was pretty far along, and well into his 80's and even though he didn't use the w33d a ton it at least got him to eat and just kinda mentally relax a bit more.

My mother inlaw was definitely down with it, she had awful trouble with indigestion and lost her appetite almost entirely and the w33d helped her so much -- she would even crank up the Pink Floyd :)

just something for you to keep under your hat til you need it

Good tip. Even though it would be uncharacteristic for her to roll w that (she doesn't even drink or smoke) she has already uncharacteristically agreed to low dose Vicodin so maybe that will be the narrow end of a wedge called drugz.

This whole thing just really isn't filtering through to all parts of my brain yet. Likewise with wife.

it'll take a while

fuck cancer

i am naturally selfish to a sufficient extent that I will do that, believe me.

ok, but i am compelled to note that i don't believe it's selfish to take care of yourself! it's a necessity, like food and sleep :)

hey guys I'm hoping someone has had some experience with this: mother-in-law (yes it is advanced pancreatic cancer, possible liver involvement) is taking oxycodone for the pain, and last night she got paranoid/irrational. My wife is there taking care of her by herself; she said she was talking in circles about this one thing that had annoyed her the day before and couldn't stop. I see that paranoia is one of side effects of oxycodone in the "rare" subheading. The oncologist had prescribed her ativan along with it and I'm guessing that would be indicated at this point, since the pain meds are a must?

My mom died of pancreatic cancer and she was prescribed liquid (oral) morphine and ativan. I spent the last month of her life with her - she was occasionally delusional. She did not spend the whole day in that state however and would snap out of it. The visiting nurse gave us a pamphlet on what to expect and it was all there, laid out the course of everything. My mom read the pamphlet too and when she put it down... man that was rough.

Good luck, Jon

My mom read the pamphlet too and when she put it down... man that was rough.

;_;

Yeah this lasted I guess a few hours and this morning she is her usual self. But she will need a lot of oxys today so I hope the freakout can be avoided. Wife has a call in to the oncologist re meds and is waiting to hear back.

Yeah, no harm in looking at new meds as long as helps the pain.

One time my mom bolted upright in bed and said "I need put in an obituary!" Then slunk back down and was normal again. Kinda lol mostly sad.

Jon, that sounds like delirium, which tends to fluctuate and is often worse at night. Opioid painkillers like oxycodone can trigger delirium (but then, so can pain itself, along with sleep disturbance and a whole host of causes), and benzos like Ativan can actually make it worse (in some cases, YMMV).

They might try to scale back her oxycodone dose if they think she could be overtreated, but that might not be an option, it's a painful disease. There might be some other options for opioids that are less likely to produce cognitive side effects.

Otherwise, they might use a low dose psychiatric medication to try to help limit her confusion while keeping her calm at night. Seroquel (quetiapine) is often useful for that purpose in the hospital setting.

It might be good to ask if a palliative care doctor/nurse could review her case. They're often more experienced than even the oncologists in managing the many challenges of trying to provide effective and well tolerated pain control in cases of advanced cancer.

All the best, it's a tough situation.

For the first week, she had been on Vicodin, which had not produced this effect. After talking to the onco my wife switched her back to that yesterday; so far so good. Only problem with the Vicodin is that the Tylenol ingredient limits the number of them she can take per day.

There is a dedicated palliative team who will be brought on line shortly I am told

they had an in person follow up with the onco today. It was confirmed that the cancer exists in the liver as well. Dr wants to pursue an aggressive chemo course: a "port" will be installed on Tuesday. Lord love a fucking duck.

ugh jon that's rough

So there's a little girl who's a classmate and friend of my younger son, who, two years ago, was diagnosed with a rare type of kidney cancer. Since her diagnosis, she's mostly been absent from class while undergoing various intense treatments. Every now and again she'll make it school to see all her friends and have a small bit of normality back in her life, but it's been a long ongoing battle for her. Generally there's a very high rate of success for the treatment of her particular illness - some 90% or thereabouts, but unfortunately her cancer has returned and all the treatment options that the NHS are able to provide have been exhausted. However, there are still further courses of treatment available privately, both in the UK but mostly in the US, and as giving-up isn't really an option, her parents are urgently trying to find the £100k that it's going to cost.

Sorry if I sound vaguely robot-ish describing the situation btw, but I'm still finding the whole thing really scary and hard to process. How the fuck does an 8-year old cope with this whole thing? And I just can't fathom what her parents must be going through at all. I've found it pretty much impossible to think about, let alone discuss... my wife's needed to chat about it sometimes - she's a lot closer to the parents than me and I've just basically been quite useless here and unable to deal with it at all. It's only now that there's something to be done that I feel like I can even approach engaging with it properly.

Anyhow, there's a whole little fundraising operation kicking off here - kids making and selling stuff, parents thinking up various little schemes and calling in favours from friends and aquaintances. Someone's mum knows Simon Cowell's mum and reckons they might be able to pull a few strings; one of the school dads is a professional footballer for a minor Prem league club and he's talking about tapping up his football mates; someone else knows a fairly well-established gothy singer with a decent following who's supposedly going to write and sell a song especially to raise some money... the benefits of living in a relatively well-to-do city I guess. All of this talk of DOING SOMETHING is so hopeful, god knows if these people will actually deliver but even if only some of these things come through I think there's a fair chance of meeting the target. And I know the fundraising is kind of a diversion from worrying about the medical side of things, but I'll happily take that for now and surely it must be a huge boost psychologically for the family too. I'm organising a sponsored bike ride for my elder son and his friends to do, and I'm actually doing some crazy running race in a couple of months myself which I'll get people to sponsor me for, so I'll post a link to that once I've sorted a page if that's okay. I keep nagging my wife to bake me some cakes to sell at work, I guess I really ought to get on with it myself but I'd give Roxy's cousin's mooted bakery a run for their money as far as making things-you-wouldn't-want-to-find-in-your-mouth goes. So... full of hope and anguish here and can't stop thinking about this thing, apologies for rabbiting on.

Hope everyone's doing okay out there with their own battles!

uggh huge wall of gibber

Sounds like she's got the same thing I had when I was little - if that's the case, your friends might already be onto these people for info:

http://en.wikipedia.org/wiki/National_Wilms_Tumor_Study_Group (although American, very informative)

I hope they have good luck with fundraising and are able to get your son's friend sorted out; don't worry about blethering on this thread!

My friend mentioned waaaay upthread got his all-clear two weeks ago and is also the proud owner of a PSA reading of 0.02.

That is it exactly Suzy and thanks for the link.

Also way to go Suzy's friend! :)

A colleague and friend to many at my workplace died far too young at age 53 today. She fought a confounding form of cancer for 2 years before it robbed this vital, active woman completely.

Just needed to say it.

Sorry to hear, Sparkle Motion. Hope you are doing okay.

After a couple of rounds of chemo, my cousin's wife had a double mastectomy last week and is recovering well. She has two teenage kids and is a lovely, lovely woman. Doctors seem sure that the operation means she will be fine from now on.

Thought I would post a bit of happier/hopeful news here, I hope that's okay.

NickB, the community's support must mean so much to that family. That's really lovely.

My mom (stage IV ovarian) was lucky enough to get in a study where she is one of the first two humans to take this particular drug. We had some great news when scans showed tumor size reduction recently. But now she is back in the hospital with a fever and fluid needing to be drained.

It is a roller coaster

it fucking sucks

my mom was with me for every harebrained scheme I could think of, she thought nothing of it

good luck Sufjan

Thanks, brownie. We will see how it goes. This thread and ILX have been very important to me in coping with this. It is very sad but also strangely comforting that so many of us go through this sort of situation. I am of course partial toward my mother, seeing as she fed me so many pretzel sticks pushed into cheese cubes mid episodes of The World of David the Gnome. But my fiancee, who has no such bias, seems to think quite highly of her as well. Her own very healthy mother has behaved quite badly in this life, so one can imagine the questions we direct toward the sky on a clear night such as this one. Still, even our closest friends have health problems I'm not sure I'd trade for. Good luck to everyone on this thread.

best wishes to you, sufjan, (your mother sounds top notch) and to everyone else who has loved ones facing this. i lost one of my best friends five weeks ago to breast cancer that had spread to her liver. i loved her dearly, as many people did. she was very funny and rotten and bossy and brave. she reminded me of a heroine from an old fashioned girls' annual, but without the piety. i was lucky and managed to see her the day before she died (she lived in a different state) and she was still being thoughtful and laughing and taking an interest in everyone else's doings. i'm glad her suffering is over but it is a huge loss, these are all huge losses.

<3s to all

Mother in law pancreatic stage 4 update-- Thursday night my wife's sister took her to the ER because she was in tremendous abdominal pain despite the morphine patch-- at first they thought she had a severe gallbladder infection but by Friday had concluded it was simply that the tumor got bigger and is impinging on the gallbladder and causing bile ducts to be backed up etc. we came up from NYC the next day (my birthday, grimly). Her white blood cell count was very low on admittance. That's been attributed to the chemo now. Her onco expressed misgivings about continuing chemo now, since a) the tumor grew apace despite it and b) the white blood cell having plummeted. Wife and her sister are very much against this idea as chemo represents the only hope of beating this back. She is still in Brigham & Womens Hospital; the quality of this cluster of facilities in Boston is amazing to me. I wish all hospitals could be like these. Anyways, at this point everyone (she herself, my wife & her sister, the medical teams) want her to be in a 24 hr care environment; apparently she will be covered for this if she has been in the hospital for three nights or more, so that's what is going to happen once Brigham & Womens discharges her. Wife and her sister are dealing with the cognitive challenge of "I am putting my mom in a home". Everyone, every combination of people involved not least the patient, fighting each other, sometimes so fierce and dirty that this only child's brain shuts down and spine turns to jelly. I am in the au bon pain in the lobby rn and have been on my own most of today on my own because I have head cold symptoms
since last night and thus can't go in her room.

Hey Jon - I work at BWH and will be there tomorrow at 7:30 am. I say this for two reasons. 1) if you're still around and would like to grab coffee or if you see me in the hall and have a "random ILXor spotting" moment I don't want you to get freaked out. Also, the physician I work for is very kind and knows practically everybody in the hospital. It's a wonderful place but if your mom needs anything at all or if I can ask him to talk to the Drs or just do anything, please don't hesitate to let me know.

(I am in that Au Bon Pain at least 2x a day)

Oh shit ha! We will probably get here tmrw around then and wait for the drs to come on rounds etc. if I am still head-coldy I will be kicking around the lower reaches here. I can't remember if we are FB friends or not but I'll send u a request right now if not. Estelle's onco is doctor Ng and I don't remember the names of the other team members rn but the nurse practitioner, who is awesome, is named Nina.

I deactivated my FB so I'm not on there anymore. But you can always send me a message through ILX mail. I work in the Heart & Vascular Center so don't know most of the onco docs but, like I said, if anything comes up my guy has some pull and might be of help in getting better attention or answers or anything but I'm really glad her NP is awesome! :D

Ok I'll ilxmail u

Thoughts with you Jon. Having met ENBB, you should do your best to meet up. She's awesome. And hopefully I'll see you later this week.

Aw :) likewise! Are you in the area?

Sadly, no. I'm coming to New York the middle of the week.

ENBB I can't seem to get ilxmail to work on my phone. It keeps telling me I'm getting the captcha wrong. I have a B&W question and if u feel ok abt emailing me direct my address is joncroaker ~at~ gmail

Just did :)