Just wanted to send some love to all the fighters and the families out there grinding through this nightmare of a disease alongside them.. vedran is pushing forward, heading towards Germany after 75 rounds of chemo. I’m not trying to make this about me, I just want to tell everyone: keep fighting. You can live with cancer, and you can beat it. One day at a time. Sending love to everyone, especially Angela Wright...
swiftpanther102 said:So, Dad's doing chemo based on the PE protocol (platinum). He started his 3rd cycle today (the three-day kind), but since tomorrow's a holiday, they’re just giving him a pill instead..
What's the deal with the reactions? And does taking it as a pill actually work the same way????!!! What should we be looking out for?
Which chemo are we talking about here? For what kind of cancer?? Are you guys referring to FOLFIRI plus oxaliplatin or something else?
Just checking in real quick... I just finished my 60th round of chemo and I'm moving right along. I wouldn't say I feel "great" per se, except maybe for the toothaches, the constant nausea, my arms and legs going numb, and this nerve damage in my tendons. Plus there's the insomnia, hitting the bathroom about 20 times a day, my whole face and body breaking out in these nasty red rashes, and the non-stop gut pain from the actual disease—not to mention my liver taking a hit and dealing with some ascites. Throw in some weird blood pressure swings ranging from 100/50 up to 160/95, and yeah... I FEEL FANTASTIC. Hang in there, everyone...!!
Richard Sanders7 said:I've been lurking here for a while, wanting to post, then deleting everything and just walking away...
About a month ago, my mom was diagnosed with pancreatic adenocarcinoma with liver and lung metastases, pleural carcinomatosis, ascites, and all that bad stuff... 😢
When they first found out, she wasn't even feeling much of anything. But things started sliding downhill pretty fast. Her legs got weak, walking became a struggle, and she lost some appetite—but honestly, she still felt okay. She was eating reasonably well (I tried to keep her on a clean diet—lots of fruit and veggies, swapped regular oil for coconut, cut out red meat, made sure she had flaxseed oil and low-fat cottage cheese, etc.). And she wasn't in pain.
She didn't want chemo because, in her eyes, that’s just the beginning of the end. I eventually talked her into it, though. We saw an oncologist, and on July 18th, she had her first dose of gemcitabine (just one infusion, not a full cycle yet). Since then, things have gone south fast. Every single day is worse than the last. 👎 She spends all day in bed, barely eats (maybe some fruit in the morning), throws up at least twice a day, can hardly walk, and worst of all, she's in massive pain. I honestly don't know if there's any point in pushing the chemo, especially since this specific cancer is basically the worst of the worst. But I don't see any other choice.
Yesterday I ordered some raw propolis, and tomorrow I'm hitting up Whole Foods to find some decent honey with royal jelly. I also read that beet, lemon, carrot, and apple juice might help, so I'll start prepping that too.
I've scoured the entire internet, reading everything I can get my hands on. The most solid thing I stumbled upon was this article from the Cancer Research Institute. But I have no clue how to actually track down the full thing.
A little bit ago, I managed to get her to do some sit-to-stand exercises in her chair. She did ten reps. I told her she needs to buy a shirt that says Never Give Up! She actually laughed. 😁
Sorry if this post is a bit all over the place. Wishing everyone here the best, especially wiredotter75.
THANK YOU SO MUCH.. I mostly just come here to lurk because posting on this cancer forum plus Facebook is just exhausting, but then I read your post—knowing what pancreatic cancer means, the liver mets, the ascites, ugh—and then I hit that last sentence where you mentioned me and I just broke down crying.. I'm so sorry about your mom. Keep encouraging her, stay strong. There's always something more that can be done; it's all about mindset, strength, and love. Hang in there. I'll send you something via DM... can't say it publicly. BTW, I'm heading in for a new round of chemo this Friday... last line of defense... we'll see. I caught some kind of bug from the coast because I let my guard down too much—swimming, eating ice cream twice a day, drinking wine, falling in love, and all that. So now I've got a fever. Hopefully, I'll be okay by Friday.. Peace to all the fighters and everyone in this family.
Angela Wright said:Prof. Molls Radiation Therapy at the Technical University of Munich Klinik-fuer-Strahlentherapie Rita Engl Chief Secretary (secretary) tel.: +49 (89) 4140-4501 Fax: -4882 Clinic and Polyclinic for Radiation Therapy and Radiological Oncology Klinikum rechts der Isar, Ismaninger Str. 22
Contacts are right there. Honestly, if you want to know what they can actually treat, just ask them directly. A friend of mine used them to treat lung metastases instead of breast cancer. Sadly, she didn't find out about that option until her health was already trashed from years of treatment. The thing is, the tumors did recede, but she ended up passing away anyway because her heart couldn't take it.
thanks, super helpful......... I'm moving on after this initial shock moving forward.....I've got some options to look into.........
I didn't send it to Angela Wright... I guess they might actually reply if I just shoot them an email?? One doctor told me today that I could just buy Vectibux myself and have an oncologist handle the infusion privately. He was honestly shocked they didn't put me in the clinical trial, especially since I saw people who were basically 80 years old getting in. I mean, every life is worth something, right?
Mentally, I've pretty much hit rock bottom, but I guess I need to find some strength to pull myself together.
I shouldn't even mention alternatives, but I'll be taking... That stuff everyone keeps talking about.. Hang in there, everyone fighting this.
Just checking in myself. Just like I thought, based on my markers and just how I’ve been feeling, the CT scan results finally came back. It's total progression. Everything from ascites to peritoneal metastases that are already way too big now, plus maybe some new recurrence in the colon along with polyps and bowel narrowing—and there are suspicious lung metastases, tiny ones, maybe 3 mm... I'm out of chemo lines. No more FOLFOX. The Americans (thank you guys, seriously) didn't include me in the trials for their panetuximab or Vectibux drugs. So, I'm most likely looking at no more chemo and heading home. I'm going to try for HIPEC surgery if I can. My doctor is supposed to write a recommendation, but honestly, they won't really know the full extent until they actually open me up, though even now they're debating if it's already too late... There it is. A guy who was swimming in the ocean just this morning now has almost all his windows shut. Palliative care? What does that even mean at this point? Tramadol, morphine, pain meds, draining the ascites? That's it? It just sucks. On one hand, I wanted to fight, and I fought like a lion—42 months, even though they originally gave me six months to a year max... maybe I'll make it to 48, who knows. I'm pretty depressed. And believe me, any words of comfort feel meaningless right now, even though I appreciate everyone. Please, just spare me the "alternatives." If you'd just Google peritoneal carcinoma and a few other things before suggesting I drink baking soda or kerosene... I hope God heals everyone.div>
Angela Wright said:Look, no hard feelings, but I think you’re totally missing the mark on what palliative care actually is. You're looking at it like it's just some "end-of-life" thing centered around Hospices, which is way too narrow. That’s just one tiny slice of a massive medical field. In places where the healthcare system is actually dialed in, people live with metastatic diseases for years—living well, staying active—all thanks to palliative support. The whole point is extending quality of life, not just waiting for the end because curative treatments ran out.
Okay, I get it better now... I guess I’ve got my own biases and fears, but it's not like all options are gone, there's still stuff out there,,,,,,,,, I feel fine right now, things might get rough later but for now I feel great and I'm moving forward.......who knows,, maybe something crazy happens.. anyway, stay safe and take care..
Really sorry things are taking a turn for the worse. I get it, though—after fighting this thing forever, you just hit a wall. But don't throw in the towel yet. Dig through the research, send in the paperwork... everything I’ve learned is that there’s always *something* else to try. Even if it isn't a cure, maybe it's just palliative care to make things easier. Hang in there.
Angela, don't get mad at me but palliative care? Yeah, no thanks. I'm not having it. If it comes down to that, I'll just put a bullet in my head. I promise you, cancer isn't gonna be what kills me, and I sure as hell won't die lying in some bed on palliative meds... no way, no how. I'll just head out to the mountains, crack open my favorite drink, and handle it myself. I am NOT dying from cancer. No way..
Congrats, Ivanic, hope things stay bright and healthy for you... Unfortunately, my situation seems to be sliding backward. My markers spiked again—it went from 6 to 8.4, and now it's sitting at 9.3. I get my CT results this Monday, and honestly, based on the numbers, my doctor thinks the cancer might be progressing. I’ve already dropped 3 pounds in just 3 days... I've finished 57 rounds of chemo so far. But look, if they pull the FOLFOX option from me, I'm in deep trouble. I might even just call it quits on the chemo altogether and pack it in. I'll check back in on Monday once I have the CT news..
First off, congrats to everyone in America on joining the EU!!! I'm actually jealous!
There's a chance they might swap out my Cisplatin for Carboplatin because of some brutal side effects. Anyone been through that? Is it just as rough, or maybe easier?
Or, they might add Aloxi alongside the Cisplatin. Has anyone here messed with that drug before?
They've never done a gastroscopy on me, so now they're debating doing one to check my stomach, bile ducts, and pancreas all at once. Anyone have experience with that kind of exam?
Give my best to Vedran and Angela Wright! You guys are total heroes!
Man, I honestly thought you were getting the Aloxi. When I first switched from FOLFOX + Avastin, I wasn't on anything else and I puked like 33 times... once I told my oncologist, he put me on Aloxi immediately and since then I've handled the FOLFOX chemo with Oxaliplatin relatively okay—though, let's be real, chemo is absolutely brutal, especially that tingling in your hands. Right now, I’m about 10 days into my Anagams, just floating around until I snap out of it, then for the last 7 days I relax and feel great and get stuff done. I was even at the beach this morning, though that nerve tingling hits whenever the temperature changes; if that bothers you, man, it's no joke. I got used to it, even though during Anagams it felt like I was getting electric shocks every thirty seconds. But whatever, I am NEVER GIVING UP.. Heading in for chemo number 57 tomorrow. And I might get my CT results this Friday. And I am SO, SO, SO, SO SCARED of progression. Ascites... ugh, that thing is nasty. Peritoneal carcinoma... ugh, ugh, ugh, I just hope it doesn't grow. Then there's the threat of new colon cancer or liver mets, or God forbid, bone mets... all that's waiting for me sooner or later, along with death eventually. But still. I'M FIGHTING UNTIL THE END.. BTW, if you've had a colonoscopy, then a gastroscopy is child's play. Just stay calm and don't sweat it. They put a little ring in your mouth to bite on, slide the tube down to your stomach, and you just gotta swallow. It's not nearly as scary as people make it out to be... I'd take 10 gastroscopies over one colonoscopy any day. Hahaha. HANG IN THERE.. PROVES YOU CAN DO IT. JUST TAKE IT SLOW..
Casey Booth3 said:Vedran—hang in there, don't give up! Have you looked into the Baking Soda thing? It's all over Google. I know, sounds totally crazy after everything you've been through with chemo, but maybe it’s worth a shot—especially with those digestion issues you're having (it helped my husband with his stomach ulcers). Just want you to get better. There are no set rules, we're all in our own boat here. For some, treatment is long, for others it's short—just stay brave!!
Haven't tried it. I've read about it, and yeah, people have told me what they take, but honestly, I'm just lazy and have no clue where to even start... if you have any tips on how to kick this off simply, just shoot me a DM. I'd really appreciate it. Might give it a shot..
So, I just finished my 56th chemo session... spent about 48 hours hooked up to the pump, haha. Got home on Friday, now I'm just trying to flush my system and recover a bit. Of course, my markers jumped from 6 to 8.46—that's almost a 45% increase. If you ask me, I think the disease is progressing again, but the doctor, naturally (won't admit anything until he sees the CT scan), is totally denying it. We'll see soon enough. If things are looking bad, I'll probably just push through a second line of chemo, and then it's either some clinical trial or just heading home to meet God... hahaha Great life, right!?? But hey, we keep moving NO SURRENDER!
@Rachel Wood27/">@@Rachel Wood27 definitely needs to get a second opinion, maybe even a PET scan. But honestly, it's hard to give advice when I'm right there in the trenches too... I'm currently on my 56th chemo session. It's going okay, I guess. A little nauseous, bloodwork looked fine, but unfortunately, my markers jumped from 6 to 8.4, which has me pretty worried about progression. But whatever, gotta keep pushing forward, I guess. @Kevin Bishop10/">@@Kevin Bishop10 where you at?
Angela Wright said:Thanks to everyone for the support and for checking in. They gave me my last Dex just in case the baby has to come early. My blood pressure seems steady for now, bloodwork looks okay, though protein levels are right on the edge. Little one is doing great, though—sitting at a solid 1800g for 31 weeks, so I’m really hoping I can hang in there until at least week 36. Honestly, I'm terrified of that HELLP syndrome kicking back in. They told me they could have me in delivery within five minutes if things go south, and yeah, I’m definitely going in for a C-section.
Just got back from work... lucky me, thanks to my coworkers who hold it down for me as long as they can before letting me go. First off, Kevin Bishop10, I’m not just saying this to be nice—I genuinely, deeply care about you guys fighting this. You’re actually in a better spot than I am (though I know every case is different and you guys can totally beat this and recover). So, look, that formula works like this in your situation, and honestly, in pretty much any case. You take the neutrophil granulocytes percentage and multiply it by the WBC, like 0.43 x 3.3 = 1.419. That’s right on the edge, but hey, oncologists obviously know their stuff better than I do. It’s supposed to be 1.5. My worst was 0.30 x 3.7, which puts me at almost 1.0... but last time it was actually great, like 0.50 x 5.5. At least, that's what I've picked up... if there's an actual EXPERT here, please correct me if I'm wrong. Anyway, I REALLY WANT TO BEG YOU ALL TO KEEP FIGHTING. It sucks. It's hard as hell, seriously. But there's a certain satisfaction in the fight, even if you only get one good day out of a 22-day cycle. I don't have anyone else to lean on—no partner, no kids. Just my Mom, my dog, my Dad living on his own, and my brother living out of town... I walk the dog, he sleeps with me day and night... and I fight. I'm telling you, you gotta fight. Even when the symptoms hit hard—this time they wrecked me for 9 days straight—but once they pass, it feels like someone pulled me out of a deep well and I finally caught a breath of air. If my blood counts look okay this Wednesday, I'm heading in for chemo round 56. Best of luck to everyone! Regarding the Aloxi, I think this is how they dose me: Peptoran, Apurin, Dextasone, Tramal, then Aloxi, followed by Leucovorin and Oxaliplatin, then the 5-FU via IV and infusion. Then the next day, it's more Leucovorin plus the Peptoran, Dextasone, Tramal, and Aloxi, and I think it's 5-FU again... maybe? I think I get Aloxi twice, but I'm not 100% sure.
And honestly, I'm not even sure if I'm getting Dextamethasone anymore. I can't remember how much I've had, and frankly, I don't really care. I know I always track it when it's Campt and Irtec, then Leucovorin, Avastin, and 5-FU... and then the next day it's the same Leucovorin and 5-FU... along with Emend.