Nancy Thomas18 said:Hey everyone, hi from me too... technology fails sometimes, you know? My computer was acting up and I was totally stuck in a bind. I unfortunately missed my last chemo cycle... after the seventh one, the nausea and weakness were just way too much. Now I'm doing follow-ups and my CEA is high again, and my liver labs look like they belong to an old alcoholic... I still have a CT scan with contrast coming up, and honestly, everything is just starting to feel kind of meaningless... I even stopped taking the propolis and Enshure, and it feels like someone is slowly sucking all the strength right out of me through a straw...
I am so glad you finally checked back in!!! Don't leave us hanging in suspense like that for so long next time! 😁 I'm so sorry that the nausea got the best of you, but don't you dare give up!!! And I won't hear any of that "everything is becoming meaningless" talk!!! 🤣 Think about it, there are definitely people (your son!) and things in this world that mean you can't feel that way. Let those thoughts give you the strength to push through when things get at their absolute worst. Hmm, it sounds to me like you might need a better reason to stop the propolis and Ensure??? Please try again—it's worth trying anything that might help. Maybe the current test results are feeling discouraging, but what would it have been like if you hadn't fought from the very beginning? I believe, it isn't easy, but that doesn't mean things can't get better!!! Maybe try something else for energy? Hmm, maybe some green algae? That's good for the liver too... I'll send you a PM! Anyway, I'm thinking of you, so please keep us posted! 🙂
I escaped for a little vacation for a few days so I haven't been following along with what's happening... I'll catch up... buhtlica, please accept my sincere (and late) condolences...
So, my mom finished her first round of chemo back on June 27th... she’s doing this six-cycle thing following the Mayo Clinic protocol. We’ve got a bit of a gap before the next one starts on July 28th because her oncologist actually gave her an extra week to recover after that first hit... I mean, she wasn't totally sure how Mom's body was going to react to the initial shock, you know? Usually, they run on a 1+3 schedule, but we're just taking it day by day right now... I honestly didn't have the guts to post anything until now. After she finished her cycle, I was just sitting there, terrified, waiting to see how her body would actually react... I mean, I guess we can be pretty happy with how things are going so far (even though, let's be real, how she reacts doesn't really tell us if the therapy is actually working)... She didn't deal with any nausea, just some loose stools—actually, it was basically straight-up diarrhea—on the very first day she started the treatment. And her hair hasn't fallen out yet (though, honestly, I'm still watching her like a hawk)... 🙂) So, three days after her period wrapped up, she suddenly starts getting these little sores on her bottom lip—which is just great, because she’s been super diligent about brushing and rinsing with chamomile and sage all along... I mean, what else are you supposed to do? Luckily, they didn't spread deeper into her mouth, and thankfully they've already started clearing up. She was using some Gelclair and an alcohol-free propolis, which is basically her go-to cure for everything, even though nobody really suggested that for this specific situation... 🙂)
I mean, honestly, we’ll be counting our lucky stars if this whole therapy thing wraps up with nothing but these side effects... but man, I don't know... I’ve got my doubts... From what I’ve heard, the body starts getting seriously worn down after that third cycle? I guess everything is different for everyone, obviously, but I’d be so incredibly grateful if someone could just jump in here and share what they actually went through...
Everything is just totally screwed... Has she been MIA lately or what!? Does anyone actually know how she’s holding up? I’m seriously crossing my fingers over here... I really hope she made it through that last round of chemo...
dustyranger11, I don't have any firsthand experience with Quest Diagnostics, so I honestly can't tell you anything reliable... My mom hasn't gone there yet. I’m guessing she'll head in after her third round of chemo. Hmm, actually, maybe she should probably be scheduling that right now?
According to what they have listed on their website: Physicians from the following specialties may refer patients for an FDG-PET/CT diagnostic procedure: oncology, pulmonology, gynecology, dermatology/venereology, internal medicine (including hematologists, gastroenterologists, and endocrinologists), and pediatric oncology—basically, anyone treating conditions where clinical indications for FDG-PET/CT have been proven effective
Maybe the best move is just to give them a ring and get the lowdown straight from the source (you know, listen to the experts!)
Anyway, how's your dad doing? Hang in there, okay? Don't let it get you down!
Linda Wright5, sorry about that, I just cleared out my inbox
dustyranger11 said:I tried looking for his test results and he just started yelling at me, acting like he was doing me a huge favor by letting them put a probe in him and keeping him in the hospital for a few days.
Look, if you haven't gotten those results yet, you need to head right back to the hospital and demand them—ask for your dad's doctor, the attending physician, the administrator... honestly, it doesn't matter who. You have a legal right to this! Just cite article 23 of the Patient Bill of Rights from The New York Times, issue 169/04
"The patient has the right to access all medical documentation pertaining to the diagnosis and treatment of their illness.
The patient has the right to request copies of the medical documentation mentioned in item 1 of this article at their own expense.
Medical documentation provided to the patient upon completion of a medical examination, or upon completion of treatment, is governed by specific laws regulating the types, content, and methods of managing, storing, collecting, and distributing medical records."
They tried playing games with me at first too—my mom's doctor had gone on vacation, so the nurse wouldn't hand over the results right away... So the next day, I went straight to the head nurse and the attending doctor, and they gave me the originals without any issues (I just made copies and gave them back after a couple of days). If they are discharging your dad from the hospital, I really think—regardless of how he’s doing—they should have handed you a discharge summary! When my mom got hers, she got the discharge papers with all her test results included immediately.
From what I can tell, you aren't from Washington, D.C.? If there isn't a decent doctor in your town who can actually guide you on what steps to take next, maybe try calling the hospitals in Washington, D.C. first, explain the situation, and ask when you can come in... Or just head straight to one of the big Washington, D.C. hospitals through the ER!? They have to see you! One lady on this forum told me they showed up at the General Hospital exactly like that. DON'T GIVE UP! At least try to get the tests done if they didn't manage to do them at your local hospital.
A few days before my mom's surgery, I went to talk to the surgeon who was supposed to operate on her (at the hospital where she did her testing). He might be a great surgeon, but the man was absolutely nothing to write home about. He totally blew me off... just mumbling something about it being inoperable, barely even glancing at the results... It definitely solidified our decision to have Mom go to a different city for the surgery... The operation went perfectly! She was operated on by a highly respected Chief Surgeon who—whenever I actually managed to track him down (and I spent hours hunting him through hospital hallways :-) —could always spare a few minutes to first shake my hand (which apparently is beneath many people these days), and then walk me through Mom's condition... By the way, that surgeon from earlier wouldn't even look up from his computer while I was trying to talk to him (after I waited an hour just to be seen)...
I know you don't have much time, but let this just be a reminder that we all have to deal with arrogant doctors as well as the good ones. Don't let these first guys discourage you!!!
Also, there was already some talk on the forum about getting a PET CT at Quest Diagnostics over in the city. I think you might be able to get seen pretty quickly if you pay out of pocket (and it's not cheap), but if you're going through Medicare, I assume the oncologist has to fill out a specific form...
Linda Wright5, everything is okay, I'll look into it... hang in there!
My heart truly goes out to Alenka's family and everyone who knew her personally.
The whole situation is just... honestly, I am absolutely livid at everything—the Secretary, the entire healthcare system, all of it... Kudos to slyseal28, Angela Wright... and everyone else trying to shine a light on these issues and get the public to actually pay attention. If I wasn't lurking on this forum, I probably wouldn't even be as aware of how broken and inefficient the government really is... I have to admit that much. People just don't think about this stuff until they're staring it in the face when they hit a crisis themselves. They need a wake-up call. A serious kick in the pants! As for Alenka, unfortunately, it’s too little too late 😢, but we have to keep fighting for everyone else who's going to need these medications down the road.
Hmm, Nancy Hernandez43, I honestly think about 20% of the people I sent the petition link to actually went ahead and signed it... and frankly, I'm just disappointed.
Linda Campbell said:An oncologist from Austria told us he absolutely recommends taking selenium, certain enzymes, and mistletoe injections... and after chemo, you have to drink massive amounts of fluids just to flush that stuff out of your system as fast as possible so the body can actually start recovering. It’s such a crucial thing... Mistletoe injections are used all over the world—they're basically standard practice alongside all therapies for serious illnesses like this, especially with chemo, but here in America, doctors just shrug their shoulders and act like they have no clue about anything being used abroad. They don't even bother educating themselves on things that aren't directly part of their specific niche. Our doctors didn't even know what beta Glucan was, let alone other products like it... The mistletoe injections work as anti-carcinogens and boost your immunity. Along with everything else, don't forget about diet, and definitely herbal teas. Look up which teas Breuss recommends for specific types of cancer. You should also definitely look into that product I mentioned to you the other day—from Natura Viti. Give them a call. Those are the enzymes you need.
Linda Campbell, honestly, what would I do without you (and everyone else, obviously!)!!!
I went to see the oncologist this morning—she was super nice, a solid 5 out of 10... except, of course, she couldn't tell me if taking beta Glucan and native propolis during chemotherapy might cause any side effects so she recommended my mom shouldn't take them during that time. Can anyone share their experiences regarding this??? Because if she stops taking those supplements now, how is she supposed to boost her immunity at all...
I don't even have to mention that she knows NOTHING about mistletoe injections! I got the impression she thinks it's some unverified herbal concoction... Meanwhile, I'm busy researching where to get them—maybe a pharmacy near Dolac, or even sourcing from Germany... I'm relying on the experiences of those of you who've gone through something similar, but it would really mean something if an oncologist actually had knowledge about things that could support standard therapy. This way, every single step feels uncertain because we're just left making amateur guesses.
The diet has been completely overhauled since the diagnosis (not counting the hospital days when, after surgery, she was served heavy veal, huge steaks, mashed potatoes, and salad—half of which she couldn't even touch)... and she's drinking herbal tea based on a nutritionist's recommendation plus matcha for a change
Mom starts her first cycle on Monday (out of the six planned). Fingers crossed 🙂 The oncologist also mentioned that the therapy is fairly mild and side effects (like hair loss or nausea) are rare, though oral cavity reactions are more common... We'll see... Thanks!
Linda Campbell said:My mom used to stick to fresh germs, popcorn, and raisins. I’ve also heard about those homeopathic stuffs, ........R. Regulat .....BLAS KEEP GOING
Along with some native propolis (she already finished one whole bottle), Mom started taking beta 1.3 Glucan today too (which I think I'll just order online next time, honestly, just to save some cash on the prices). I am a little worried that taking too much might be bad news since she just had bowel surgery, but this R. Regulat seems to have pretty solid recommendations out there... Our oncologist told us, obviously, that she shouldn't be taking anything at all before chemo as long as she's eating okay 🙄 But I find myself trusting your experiences way more because it feels like doctors rarely recommend anything outside of their own specific treatment plans...
Linda Campbell, I noticed they recommended selenium, enzymes, and that "basenpulver" powder to you. Did any of that actually help? I also saw some people mentioning injekcija imela, but now nobody seems to be talking about them anymore. How did you even get a hold of them? At first, I thought they were supposed to be given alongside the therapy, but if I understood you right, it sounded like you were giving them after the second cycle?
darkmaker70, hey there! How are things going on your end?
Honestly, thinking about that minister makes me want to gag🤮 Don't let someone like that get you down... 🙂! All of us here are way above that kind of nonsense.
Linda Campbell thanks... I'm feeling a little shaky right now, but I know things will work out how they have to... What used to help your mom when she was dealing with nausea? I've been reading about some homeopathic remedies (those tiny pellets) on here... where can I actually find those?
Look, I wasn't trying to go after Frank Taylor4, and I didn't take it that way from Angela Wright either... honestly, I'm just trying to get some kind of sign from her doctors about using an extra supplement, but I can't for the life of me figure out why they're totally blowing us off—is it just pure incompetence (which, if you ask me, is totally unacceptable) or do they just not approve of it? All the nutritionist would admit is that she hasn't heard a single thing about IP6
I just want to jump in on what Angela Wright was saying—honestly, every single doctor I've talked to has just completely brushed off my questions about using IP6 & inositol... they won't even give me the time of day regarding their experiences with it. I've tried calling Prof. Družijanić on her cell a few times now, but she hasn't picked up once. I guess I'll try again later... maybe luck will change. Frank Taylor, do you happen to know which specific types of illnesses Prof. Družijanić actually deals with most often?
On another note, my mom is starting chemotherapy soon following the Mayo Clinic protocol. It’s 5-fluorouracil and leucovorin, five days a week (they told us it takes about half an hour per session), then three weeks off, repeating that for six months... If anyone here has gone through this and can tell me how the treatment holds up or what kind of results to expect (the diagnosis is Dukes C, moderately differentiated), please, reach out!
dammit, I know you went through this exact same protocol. How are things looking for you now??? Hang in there!
darkmaker70 said:....I wanted to ask you how your mom is doing, since both of them had surgery just a few days apart.......mine actually seemed better right after the operation than she does now, her appetite is pretty weak, she's struggling with bowel movements, says she constantly feels the urge but then when she finally gets to the bathroom, nothing happens at all.... And one more question for everyone else—has anyone here or anyone you know used some kind of Prosure preparation?
My mom is doing (relatively) okay. Her bathroom situation has leveled out. After those initial days where things were waaaaay too soft, like 5 or 6 times a day, it’s back to normal now, maybe 2-3 times, which is what the doctor expected anyway (since her large intestine was significantly shortened). She did mention feeling a bit bloated with some gas yesterday, though. It worried me a little so I brewed some tea (some Ansal brand from DM, specifically for bloating) Maybe you could try some tea, or flaxseeds (I read they're best when freshly ground, but I just use the Leinen plus from Schnekope with ground plums included)... or maybe an acidophilus or Activia...? As for Prosure, while Mom was still in the hospital dealing with those super watery stools (literally just water!), they told me not to give it to her. Her discharge papers said twice a day, and her primary care doctor wrote her a prescription for it without any issues, but she hardly ever takes it. Plus, she says as soon as she has Prosure or Biota juice, she's sprinting straight to the restroom. The doctor also mentioned there's really no need for it if she's eating normally and has a decent appetite. When she was being discharged, her doctor told her she could eat just about anything, homemade stuff or cooked meals. Her diet right now is mostly grains... plus veggies (chard, potatoes, celery, carrots...)... fish... Chicken is a rare treat (I'm not entirely sure if she should avoid it if we can't find actual organic, free-range chicken that hasn't been pumped full of junk or growth hormones)... and yesterday she even asked if she could have lamb or goat meat... I don't really know 😁 (?) Tomorrow we FINALLY get the bloodwork done! It feels like there's always some new excuse or delay... and she's still holding onto this hope that she can dodge chemo altogether... it took everything in me not to lose my mind trying to explain things gently to her yesterday...
I’ve got two quick, practical questions for you guys:
Does a primary care doctor or an oncologist actually write the referral for getting tumor markers checked?
Also, does anyone know if the tumor clinic will even look at blood work done at an outside lab, and which specific tests they’ll actually require? My aunt was on the phone earlier and she was just incredibly rude when I asked—honestly, it probably just feels like they're drowning in work over there—but my nutritionist suggested checking this myself to see if we can maybe speed things up a bit...
Honestly, ever since Mom got her diagnosis, my brain has just been a complete mess... I’m constantly spiraling, re-reading everything on the forums and searching the web, playing out a million different scenarios in my head, trying to figure out what comes next... It’s just this endless cycle where I swing between these deep, dark moods and those moments where I try—completely unsuccessfully, really—to just push this awful reality aside for a second... I come on here to vent a little because everyone else here is living through the exact same thing (or unfortunately, even worse) and fighting the fight with so much courage (well, more courage than me, Nancy Thomas18, I'm looking at you specifically!!! 🙂)
In all this chaos, I totally blanked on checking in after Mom's surgery... The procedure was on May 16th and she was already back home after just 8 days. She’s actually recovering pretty well. But, man, the pathology report is not good news. They hit five out of nine lymph nodes. 😢 😢 😢 Mom doesn't know about the results yet, but I can't hide them for long because we need to get to the Mayo Clinic ASAP for the next round of treatment. When I watch her just walking around the house, laughing at my husband's stupid jokes, I catch myself wishing I could just pretend those lab results aren't real. I've decided to break the news to her this weekend, though I'm terrified it's going to absolutely crush her. And honestly? I'm even more scared that the oncologist at the clinic is just going to drop a terrible prognosis right in her face. I want to avoid that at all costs, but I have no idea if it's even possible or how to handle it (???) so I'm just sitting here dreading Tuesday. Since Mom only has about 12 inches of bowel left and is dealing with really frequent stools (which we're trying to manage as best we can with a grain-based diet), and it's only been 16 days since the surgery—can you guys share any experiences with immune support supplements? Specifically things like raw propolis and Beta glucan, since it seems like people swear by those. Right now, she's only taking raw propolis (the nutritionist thinks it's too early for the Beta glucan) but part of me just wants to hit her with massive doses of everything all at once 🙂 Someone else mentioned they use 15 tablets of raw propolis a day (which is like four times the recommended dose on the label), so I wanted to ask those of you who know more about this stuff—could that actually cause damage to the stomach, the intestines, or the surgical site??? Based on what you've seen, when did people start adding other supplements after their surgery, and what kind of dosages were they using??? And one last thing—sending love to all the fighters out there!!! Nancy Thomas18, you hear me!? 🙂
Nancy Thomas18 said:Reading through all your posts about how hard everyone’s been fighting—and seeing that some of you are still battling this alongside your own families—it honestly makes my will to keep fighting just start to flicker out... This forum, and that other one too, they really mean everything to me. To be honest, I told myself the other day that I’m just done with the whole treatment thing. I’ve got two rounds of chemo left, but I just don't have the strength anymore, and the money for all these extra meds is gone, and my spirit is just... spent. My son has been right by my side since day one, but he absolutely lost it when I told him this. Anyway, I have four vials of Aloxi left, so if anyone actually needs them, just shoot me a private message.
Look, if you’ve managed to hang in there this long, you HAVE to find a way to dig up just a little bit more strength! I’ve been reading your stuff since the moment you joined, and from the very beginning, your grit and that absolute refusal to back down have been such an inspiration to me. Of course your son reacted that way... I mean, what kind of person would give up? You can't do that to him, and you definitely can't do that to yourself! Your progress gives me strength, too. My mom is fighting this exact same thing. She hasn't even started her chemo yet...
wanderingharbor61 said:...all the paperwork stays stuck at the hospital....
Hmm, I actually dug this up, so if anyone's looking for some ammunition... Article 23 of the Patient Bill of Rights, published in The New York Times, issue 169/04
"A patient has the right to access their entire medical record regarding the diagnosis and treatment of their illness.
The patient has the right to request copies of the medical documentation mentioned in section 1 of this article at their own expense.
Medical records handed over to a patient following a completed medical exam, or once treatment is finished, are governed by specific laws that dictate how those types of records are managed, kept, collected, and shared."
Sorry for going a bit off-topic here, I know... I feel like I read somewhere—but honestly, I don't have the time to go digging through old threads right now—but isn't there some kind of law that says we actually have a right to get copies of all those hospital test results??? So, basically, we finally pulled the trigger and scheduled my mom's surgery at this other hospital... and when they finally discharged her, all she got was the discharge summary—which was fine, it had the doctors' notes and the basic findings neatly typed out and everything... but they wouldn't give us the actual originals. The nurse just straight up told me she couldn't... and man, I really need those CT scans specifically.
hiddentiger80 said:Please, just don't start with that whole food thing too! That obsession with eating enough and being terrified of looking skinny... man, I have actual trauma from hearing stuff like that growing up. 😁 Sorry if I'm getting worked up here, but honestly, people can be so exhausting. Look, you can't force anything, and it’s totally normal for Mom to lose weight right now, plus she'll probably drop even more after the surgery is over. But you gotta realize this is a digestive tract issue, so trying to force-feed her just to pack on pounds might actually backfire big time...
I know exactly what you mean because I've spent my entire life listening to people lecture me about being too thin. And it was mostly coming from my own mom, 😁 But, the math is pretty simple—she's standing at about $20 (around 5'5")... if she loses another 12... 😢
Dandelion, reading news like that is such a breath of fresh air—honestly, I’m celebrating right along with you! 🙂
When it comes to people being supportive (or totally useless) while dealing with this whole sickness thing... man, we’re barely even starting and the drama is already piling up. Not that anything actually surprised me, though. The people we thought were genuine, true-blue friends have actually stepped up and proven they're the real deal. I haven't heard any bitter comments from the haters yet, and honestly, I don't need to, because I know exactly which direction those insults are coming from... but then there’s just the sheer stupidity of people close to you. Like, seriously, just yesterday two people passed away and someone felt the absolute need to announce it right in front of my mom—one of those poor souls had been in a hospital room right next to hers just a few days prior... I'm pretty sure it wasn't meant to be malicious, but that kind of mindless, thoughtless behavior just makes me so incredibly angry!
Anyway, after a few days on a liquid diet (she’s dropped 4 pounds in the last 10 days alone—she's down to just 130 lbs now), Mom finally got "cleared out" enough for her colonoscopy yesterday. But ugh, it was a disaster. The pain was just too much because of how twisted her intestines are, and after about 20 inches, the doctor had to stop the whole procedure because of a blockage. Now she’s waiting on surgery, which might happen before they even get the biopsy results back... and I am just so livid because now the surgery might go ahead without that info, and I have no clue how my poor mom is supposed to put those lost pounds back on!!!??? She’s so weak, even if she keeps insisting she feels fine... Does anyone have any advice on how to help her gain weight without causing more pain or making her intestinal blockage worse??? I’m terrified she’s going to lose even more after the surgery goes down...
Also, what has your experience been like with post-op recovery and staying in the hospital? How long do people usually stay after surgery if nothing goes wrong? And does the chemo start immediately after the operation? If it does, do they let you come home after a couple of days, or are you stuck in the hospital indefinitely? Also, is it possible to receive chemo at a different hospital? There’s a chance Mom might go to Cleveland for the surgery since we have a recommendation for a world-class surgeon and a family connection over at the Mayo Clinic, which honestly seems like a way better option than the local hospital in Kansas City... I’ve let her make the final call, but I can tell what’s really holding her back is the fear that she’ll be stuck in the hospital forever and we won't be able to visit... but I fully intend to be right by her side for as long as it takes. I’ll keep digging through the forums too, since I know you guys have probably covered this all before...
And thanks to everyone who reached out via DM. There’s no question about it, the support from this forum has been our biggest lifeline!!! ...and, hiddentiger80, clean up your inbox a bit—I couldn't send you a reply! 🙂