Posts by Carl Kern66

feralsurfer72, brisklynx51, placiddrifter19, cosmiclynx14... how’s everyone doing? Anything new on your ends?

Things are pretty brutal over here lately. My dad is in constant pain, so he’s on Tramadol. He’s a bit disoriented, his blood pressure is bottoming out, and he’s basically stuck in bed most of the time.

We’re just waiting on the call from the oncology department for the next check-up and a plan of action, but honestly, based on how things went last time, we aren't holding our breath. Because of his overall condition and some bad kidney results, the doctor didn't extend his chemo. His general health is just much worse now, and we're seeing improvements inch by agonizing inch.

He can barely eat anything—maybe three tiny meals a day plus some Ensure. We haven't even managed a walk in three days, and before that, "walking" was maybe ten steps before he had to sit back down.

In the meantime, we've ended up in the ER three times because he was struggling to breathe. Last time, they had to drain fluid from his abdomen, though thankfully there was way less than the last time, which was nearly two months ago.

He got those pain patches yesterday, but since the Tramadol is still doing the job, we just set them aside for now.

All in all, it's just grim.

And me... God, I'm just screaming and tearing myself apart inside. I’m helping my mom and spending every spare second with Dad. I massage him, we watch TV when he's up for it, we talk when he can... we even manage a laugh here and there... but I spend every single moment away from him just weeping. I can't pull myself together. I do everything I need to do like some kind of robot—I don't fail at the tasks—but inside, I am completely falling apart. This helplessness is just killing us.

@feralsurfer72/">@@feralsurfer72 🙂 I feel what you said in your last post so deeply. It’ll get better...

feralsurfer72 and I are on the exact same page—he really should be eligible for home health nursing. My dad actually has two nurses assigned to him. One is strictly for his ostomy care, and the other is supposed to handle everything else. But since Dad is still mobile and doing pretty well for himself, they only send the ostomy nurse right now. She handles his blood draws, bandages the surgical wound, and all that stuff. Honestly, it felt stupid having both of them coming out when he doesn't even need the extra help yet.

Back home, this whole process just happened automatically. He got discharged from the hospital, and without us even picking up the phone to ask for anything, a nurse showed up two days later because she was assigned to a new patient. It was like some little elves had handled everything behind the scenes. 🙂

Basically, you talk to the primary care physician, but I truly believe he ought to have the right to home health services.

feralridge3 said:That’s pretty much how I’m looking at it...
People keep asking me if I’ve finally "gotten my act together" or healed from everything. Honestly? I usually just tell them straight up—no chance.

What an incredible vibe! 🙂 I'm telling you right now—I don't ever want to see that shady guest around here again. Seriously. Just get them out of my sight. 😉

feralsurfer72 said:My dad is still stuck in the hospital, and his legs are absolutely swollen—like, insanely bloated—and now there’s this redness popping up too. The doctors are insisting it has nothing to do with his heart and that it’s just some reaction to the IV fluids. So, the swelling is finally starting to go down, but now fluid is literally leaking through the skin on his shins. It's gross. There's so much of it that his socks are getting soaked. He doesn't have any open sores or anything, and the redness just looks like really irritated skin. Has anyone dealt with this before? Is this just one of those "normal" things that happens, or should I be grabbing my keys and rushing him to the ER?😕

I haven't really dealt with this personally. My buddy’s got fluid building up in his abdomen because of the metastases, but it hasn't ever actually broken through the skin. So far, he's only had to have that ascites drained once—and that was right when he first got admitted to the hospital. Some doctor just jammed the needle in and the fluid just started pouring out.

I don’t know how things work where you live regarding family doctors, but for us, we always check in with our own first. She usually gives us some kind of guidance—like whether we actually need to drag someone to the ER, if there's something we can handle ourselves at home, or if she can just swing by for a house call or whatever. Honestly, maybe give that a shot? Either way, I’d definitely get some professional advice before doing anything else.

So, how’s your old man doing anyway?

Maria Howard70 said:Hey everyone... my dad passed away last night. Rest easy, Dad... I know the angels are watching over you now.😢

Maria Howard70, I am so incredibly sorry for your loss. 🙂 Rest in peace to your dad. I’m really hoping you and your family can find some actual peace of mind during this.

cosmiclynx14 said:Carl Kern66 I don't know what kind of supplements you guys are all using, but my dad’s been taking beta-glucan and man, his appetite is through the roof... like, unlike anything we've ever seen. Apparently, that beta-glucan stuff is killer for the immune system—it supposedly stops cancer cells from latching onto blood vessel walls and surviving... or something like that, I'm no doctor, don't ask me to explain the science. But seriously, it kicks the appetite into overdrive. I actually took it for a while when he started, and I could barely eat enough to feel full.
As for ginger, I swear it’s amazing for nausea. We toss a little bit into pretty much every meal we cook. It doesn't make nausea disappear completely, but like he always says—nothing to worry about. We also use fennel, and he even chews on it all the time; it works wonders for the stomach too.

He’s already on the beta-glucan, but it does absolutely nothing for his appetite. For the immune system though? It’s a total game changer. We saw that firsthand recently when Mom caught a nasty cold and he didn't get hit at all. Usually, he's super sensitive—if a neighbor sneezes three houses down, he's basically coming down with something.

Anyway, every single time it's time to eat or take a supplement, it turns into this massive ordeal. Honestly, we're just totally exhausted by the whole thing.

Where do you even find fennel? I might give that a shot.

And thanks 😍

brisklynx51 said:...

🙂

@ feralsurfer72, you got anything new going on over there?

I seriously need some advice here—what can I give my dad to actually jumpstart his appetite? He’ll eat whatever we put in front of him, sure, but it’s a total nightmare every single time. Honestly, he’s almost at the point of tears just because it’s mealtime. For the nausea, he takes some honey and ginger tea, and that seems to help a bit. But the nausea isn't even the main issue—it's the lack of interest in food. Everything tastes like cardboard to him, and he spends the entire day just dreading the moment he actually has to sit down and eat. It’s exhausting. This is a man who used to live for his meals, you know? It's just gut-wrenching.😢

feralsurfer72 said:Dear John Foster38, honestly, thank God they haven't driven us completely insane yet. The pain started on Monday. I rushed him to the hospital, and then on Tuesday at noon, the ER was supposed to transfer him to the main medical center for a biopsy—that’s what we had lined up. We were there with him from 10:30 until 1:00, trying our best to mentally prep him for the procedure, only for him to tell us around 2:00 PM that they didn't even transfer him and everything got pushed back to May 6th. First he was terrified of the biopsy, and now he's spiraling because the fact that they didn't move him just feels like proof that the whole system is broken... It was all some nonsense about a closed road or an emergency case... He's still in the internal medicine ward; they say his condition is worsening and the disease is spreading. He can still walk, but he’s just not the same person he was two days ago. Time is ticking while things get worse, and once the biopsy is done and we get the results, I’ll have to hunt down another oncologist anyway, because this "first" one isn't going to change his mind no matter what the reports say. It feels like they're just dragging this out to give me some fake sense that I'm actually doing something for him, when really I'm doing nothing but putting him through hell.

I am so incredibly sorry everything turned upside down so fast. Hang in there!

We went to the oncologist for a checkup yesterday. She stopped his chemo because his lab work came back bad (high potassium, plus elevated creatinine and urea levels), and my dad was just too weak. She sent us straight to the ER internal medicine unit, and we spent the entire day there getting various treatments. Eventually, his potassium dropped by 0.4, and his creatinine and urea started coming down too, so we finally headed home. He got two IV infusions and seemed a little more alert right away.

The only issue now is the pain. His nephrologist told him not to take Ibuprofen (which he’d been using and it helped) because apparently, it goes straight for the kidneys. He took that as "I'm not allowed any pain meds at all," and well, you know how it goes. You just can't force him to take anything. But overall, he's doing much better than he was yesterday when we left for the appointment.

Just taking it day by day.....

Henry Lee38 said:I honestly thought I’d never be the type of person to ever post on a thread like this.
But here I am. Life’s a trip, right? 😢

It’s just... it’s brutal. Dealing with the fact that my dad has pancreatic cancer and he might not even be here tomorrow? It's too much. 😢

Brenda Mendoza3, hang in there! Don't let those thoughts get to you. Just spend some time reading through this thread—and look at the older ones, too. Seriously, people's stories and advice actually help more than you'd think.

As for how I deal with everything? Honestly, it's just "one day at a time." And you've gotta stop dwelling on that last sentence of yours. It happened. It's happening. Just breathe.

Anyone got any updates on their end?

@feralsurfer72/">@@feralsurfer72, how did the MRI go? How’s your dad holding up?

My old man is finishing his last round of Xeloda tonight. He’s got a follow-up next Wednesday to see where we go from here.

And hey, if it helps anyone else out, we've been fighting nausea with ginger. We did a mix of about 7 ounces of grated ginger with a big jar of honey. Or just fresh ginger and chamomile tea. Honestly, the pure ginger was what actually worked for him.

Angela Wright said:That’s just how you see it. Look, maybe we can't fight biology or the laws of nature, but we aren't just meat and bone—we're spiritual beings. We love, and we need to be loved; that's the whole point of being alive. The fact that you're standing by him, making sure he doesn't have to face any of this alone... honestly, in a universe this big, that's a massive blessing. We're all fragile, we're all temporary. When a life finally winds down, it doesn't matter if you clocked 100 years of perfect health only to die lonely and hated by everyone. It’s about *how* you lived and the quality of it. Just hold onto your family peace and stay close to each other. As for the rest? Well, let's just hope God looks out for us and gives us the best outcome possible.
I really hope you get to spend the holidays surrounded by peace and your family's love.

Thanks, Angela Wright.🙂

Wishing you and all your loved ones a peaceful holiday season too.

Angela Wright said:Look, Carl Kern66, sometimes the way disease works is just nasty—the primary tumor and the metastases can be microscopic, and the trouble starts before anyone even notices. Playing the "what if" game or obsessing over "if only" is useless. Don't beat yourself up over it; that part is behind you. If there was something visible, someone would have caught it. For crying out loud, doctors aren't all idiots.
It is what it is. I know you were probably praying for some kind of miracle twist after that second opinion, but try to flip the script. Focus on the fact that you now have confirmation that he’s getting the best care possible. Anything else is just spinning your wheels in the mud. You just take it one day at a time and tackle whatever obstacle lands in your path. Hey, you found out that lemon juice actually helps him? That’s a win. Take it.
Hang in there. You are doing everything humanly possible.

Thanks, 🙂 one of the first things the oncologist told us was that one reason this is called a malignant disease is because it's so damn good at hiding until it's too late.

We're trying really hard not to dwell on where we could have been or what we missed, because honestly, that just makes everything feel ten times heavier. But when you hear "you should have come in six months ago" for the third time... I don't even know what we were hoping for from this third opinion. From the very start, we knew how bad the situation was and that the statistics weren't exactly on our side, but you still find yourself hoping it's just some massive mistake. I know it sounds stupid, but sometimes I wake up in the middle of the night feeling like I’ve somehow wandered into someone else's life. Like, this is supposed to happen to other people. 🙄

And you're right. You have no idea how much it meant to us just seeing him able to eat dinner better because of some squeezed lemon. Or those moments when he manages to make his own way down from his room to the living room just to hang out with us all afternoon. Or when he cracks a joke despite everything he's going through.

We are giving it everything we've got, but it just kills you that what we *can* do feels so small...

P.S. I couldn't sleep tonight, so I ended up scrolling through this old thread and reading everything you and your family went through, along with everyone else's battles, wins, and losses. I'm speechless. You guys are heroes. 🙂

I don't even know where to start with this mess. Honestly, I’m just sitting here shaking my head. It’s the same old story every single time, isn't it? People acting like they have all the answers when they clearly haven't spent five minutes actually looking at the facts. It’s exhausting. I feel like I’m shouting into a void sometimes, just trying to point out the obvious, but nope—everyone’s too busy tripping over their own feet to notice. My bad, maybe I’m just being too cynical. Or maybe I’m just the only one seeing things for what they really are. Whatever. Just another day in paradise, right? kaže:


The smell of citrus used to be my go-to. Honestly, just scratching the peel of a lemon or an orange and taking a whiff helped whenever I felt like I was going to throw up. For me, though, the urge to gag was usually triggered by those brutal coughing fits, not from food or chemo. Look, I’m not saying this is some magic cure for everyone, but maybe ask him if he’d be willing to try it? See what he thinks. And hey, there’s probably some actual medication involved too, but Angela Wright would definitely know more about that than I do.

We tried using some fresh lemons from the grocery store tonight, and man, he absolutely loves the scent. Thanks for the tip! 😍

Today has been an absolute grind. We’re on day eight of chemo and honestly, it’s rough. He’s dealing with constant nausea—hasn't actually thrown up yet, thank God—but he is just beyond exhausted. It's endless. To top it all off, we finally got that third opinion, and it was just more of the same. We had specialists from Cedars-Sinai in LA take a look at his scans, and they were in total agreement with the initial diagnosis and the treatment plan. Basically... things aren't looking good.

That phone call today—and how much he’s struggling right now—it just ripped the scab off everything. It sent me straight back to day one, that first moment we heard the diagnosis. I swear, I walked through my front door and just wanted to scream at the top of my lungs. Every single doctor we’ve seen over this last month keeps asking the same damn question: "Where were you guys a year ago?" Are you kidding me? He was in the hospital for emergency prostate surgery after bleeding for days while they "handled" it by flushing his urinary tract over and over. Since then, it’s been one doctor after another for all sorts of issues. Sure, none of those visits pointed directly to what we're facing now, but after all those colonoscopies, ultrasounds, and chest X-rays... absolutely nothing looked suspicious. Nothing! Then he was bloated, so he had two abdominal ultrasounds. Totally normal. Then he tested positive for H. pylori and finished the treatment. He was coughing, so we rushed him for a chest X-ray. Clear. He couldn't breathe, so we went to the ER, they gave him an enema, and sent him home because "everything looks fine now." Then the bowel issues started about two months ago, so he had an enema study. Normal. All that time, cancer and metastases were eating him alive from the inside out... and then they have the nerve to ask us where we were a year ago. Unbelievable.

I don't know, man... maybe it’s just one of those days. A really, really bad one. Honestly? I'm gonna go have a good cry, and then tomorrow, we get back at it.

cosmiclynx14 said:It was the exact same story for us. Once we got the diagnosis (metastatic colon cancer), we immediately switched to this super light diet. We were just waiting for chemo to start, and honestly, things just got worse—his markers spiked. Then the doctor told us, "Stop messing with his food! He needs all the strength he can get to survive these treatments." So now, we aren't avoiding anything specific anymore. We just don't go overboard with the heavy spices like we used to. We use high-quality extra virgin olive oil in salads instead of that cheap store-bought stuff, and we pack every meal with natural ingredients from Whole Foods...
lots of fresh fruit and veggies every single day... and yeah, frankly, that’s how everyone should be eating anyway. It’s not rocket science.

Rachel Wood27, my dad started out with liver metastases that were even bigger than your dad's. The largest one was like 10 times the size, another was slightly smaller, and the third was about 2 cm... and they had basically taken over his entire liver.
Thank God, though, they're actually shrinking. We've finished 6 cycles, with 6 more to go... time is flying, we're halfway there already, and I'm just sitting here wondering what happens after this is all done..

Also, what's the actual difference between microcellular and adenocarcinoma? Ours is adenocarcinoma..

I mean, it makes sense. When we mentioned to the oncologist that his blood pressure was low, she told us to increase his salt intake since his kidneys are healthy. She said he's fighting something way scarier right now than a little high blood pressure or whatever else salt might mess with. And hey, it worked—his pressure normalized.

Today marks day eight on Xeloda, and my dad is starting to get incredibly, incredibly nauseous at the sight of food. He still eats whatever I put in front of him, but he’s repulsed by it. He gets this urge to vomit and looks like he's about to burst into tears from the sheer misery every time he sees a plate. Is there anything at all that could help dial down this constant feeling of disgust?

Amy Torres4 said:Ugh, here I am again, unfortunately..😢 my aunt was recently diagnosed with colon cancer. She had surgery back in January, and the surgeon said he cleared out everything that was affected, so then came the first round of chemo. Man, she took it incredibly hard. The doctors actually told us they hadn't seen anyone react this badly to chemo before—she almost died from the side effects. We're talking 15 days of nonstop diarrhea, fever... she ended up in the hospital, and she's been there for a week now because the diarrhea just won't stop. She’s also really anemic.... does anyone have experience with this disease? And one more thing is eating me up... the doctors told her she can eat meat, but I was reading online that you shouldn't eat meat when you have colon cancer.
thanks to everyone who can offer any kind of advice.

My dad has (metastatic) colon cancer, and his gastroenterologist told him to stick to light foods (boiled stuff, white meat...) since he has a stoma. However, his oncologist insisted he needs to eat "stronger" food because he needs the strength to survive the chemo. So, that's what we decided to do, because honestly, treating the cancer is the priority here. Look, we aren't handing him steaks and beef every single meal, but he does eat veal and beef. Generally, he eats more substantial food. I can't say he's handling the chemo perfectly, but out of a million possible side effects, he's mostly just exhausted, gets occasional headaches, and sometimes has stomach pain a few hours after treatment. He was incredibly weak and his blood pressure was terrifyingly low, but ever since he started eating better, his pressure has stabilized.

I don't know, I think if he had kept eating that bland "hospital food," things would have gone way worse. Eventually, even the gastroenterologist agreed it was okay.

feralsurfer72

🙂 I guess that’s just how everyone feels when they’re stuck in this mess. Reading through this thread really helps—both practically and, you know, for my own sanity. It’s good to see you aren't alone... Look, I don't have all the answers to your questions, but I can be here for you, and so can cosmiclynx14. I was doing the exact same thing, scribbling down a massive list of questions for the oncologist, but honestly? She ended up answering most of them just by talking to us.

We're total newbies at this whole thing, still trying to find our footing, but our experience has been a complete whirlwind since we finally met a doctor at a major hospital in Chicago. Before that, Dad had only been feeling off for about a month—just fatigue, bloating, and bathroom issues. In that single month, he went through two ultrasounds, chest X-rays, an ER visit, and treatment for H. pylori, and absolutely nobody noticed his abdomen was full of fluid until that doctor stepped in and ordered an emergency endoscopy. From that moment on, everything moved at lightning speed. He got a diagnosis in three days, had a stoma put in four days later, and started therapy just two weeks after surgery. Today is day seven on Xeloda. He’ll take it for another week, then after a one-week break, he goes back to the oncologist to decide on the next steps. Because of how he’s recovering from surgery, they didn't go with IV chemo right away; instead, they opted for pills he can take at home, which are basically meant to stop the tumor from growing further (at least, that's how I've taken it). The chemo is supposed to tackle the metastases in the liver and the peritoneum.
The whole diagnostic gauntlet included an endoscopy, colonoscopy, abdominal ultrasound, CT scans of the abdomen and pelvis, cytology, pathology, blood work, and chest X-rays. We even sent all the results over to a specialist clinic in New York, and they just confirmed the diagnosis, saying their protocol would have been exactly the same.
Anyway, that's our story. Maybe it helps you a little.

Sending a huge 🙂
to everyone.

feralsurfer72 said:Thanks, cosmiclynx14! They still haven't pinpointed the primary tumor location, so he's still stuck at the hospital. Honestly, he's eating everything in sight—appetite is great. Yesterday they told him nothing after lunch because he has to go back for another ultrasound today. It’s been two weeks since he was admitted. He’s alert, in good spirits, keeps calling us, asking a million questions... I even brought him some headphones so he can listen to the radio. He’s even trying to help out his "roommates" if they need anything. He’s lost some weight, but honestly, given what he's been through, it’s no surprise. We're just waiting.

My dad was exactly the same way when he was in the hospital, the life of the party 😁 and yeah, this waiting game? It’s the absolute worst. 🙂

We were over at the oncology clinic today. On Wednesday, he meets with the team to go over the new results and decide if they’ll start him on just Xeloda pills or jump straight to something more aggressive. I think she mentioned some kind of triple IV therapy, but who knows, I have no clue. Everything hinges on the scans and how he's holding up physically, which the doctor said is actually looking way better than during that first consultation. Basically, the doctor said there's zero time to waste and he starts treatment this Friday.

In the middle of all this misery, I was actually blown away by how kind and human the approach was. The doctor was incredibly professional but also decisive, and the rest of the staff at the clinic were great too. They handle the patients and the logistics in such a decent, human way without all that fake "pink ribbon" fluff or giving people false hope. It really means a lot...

Carol Bailey98 said:I’m writing to let you all know that my M. has passed away due to complications from the metastases. I just wanted to say thank you—especially to Angela Wright—for all those posts. They honestly helped us navigate this nightmare more than I can say. Sadly, the cancer just moved way too fast and hit way too hard. To everyone else out there fighting this hellish disease, and to the families standing by them: stay strong. You're gonna need all the faith and patience you can muster to beat this thing. 😘

I am so incredibly sorry. My heart goes out to you. 🙂

Just dropping in to send everyone a massive 🙂 and wishing you all tons of strength for the fight ahead.

Over here, we’re just taking it one day at a time. My dad had his stoma surgery, and honestly, it's working fine. Post-op is looking okay—he can get up, walk around, sit down... he's just pretty weak and gets wiped out easily. I mean, the illness is still right there, and he hasn't been able to eat a decent meal in weeks. He's still stuck in the hospital. We're really hoping he can head home soon so we can get him over to oncology for chemo. Just one day at a time...

Angela Wright said:Carl Kern66, hang in there. You just gotta adapt somehow. I know that sounds harsh as hell, but that's just how it is...

It feels like I see this happening more and more every single day. 😢

My dad is in surgery today. They actually wouldn't wait until next week since he’s still in decent shape and isn't in pain yet—so why drag it out, right? I talked to him this morning; he's terrified, obviously, but he says there's nothing to do but grit his teeth and deal with it.

Then I saw that post from Edward Grant3 (wishing your dad all the best in the fight. sending strength and patience 🙂) and it reminded me to ask: does anyone know if there are any support groups or nonprofits in Los Angeles that offer psychological help for families dealing with illness? I'm asking for my mom. She’s absolutely hit rock bottom emotionally. If she isn't at the hospital with Dad, she's just lying there crying. She won't leave the house, won't even move... and she's not exactly healthy herself (dealing with resistant hypertension and diabetes). I tried Googling it, but I can't find anything useful to no avail.

Kenneth Wilson6 said:Hey everyone, my mom passed away on March 16, 2014—exactly 16 months after her surgery back on November 19, 2012.
From late February until the day she died, everything just moved way too fast, despite all the meds and care we were providing... things like Dex, Mannitol, nursing care, you name it.
First, she lost feeling on her left side, then her speech started failing, then breathing got harder, and right before the end, she slipped into a coma. She wasn't in pain, at least that's what the doctors told us.
I just want to say thank you to all of you one more time (and God forbid anyone else has to join this group).
Angela Wright, I want to give you a special thanks for everything you've shared with us. Honestly, following your experience made my own journey a little easier to handle. Thank you so much.
I wish you all nothing but the best in life. I hope nobody ever has to walk through this hell again.
Sincerely,

My deepest condolences.🙂