Posts by Lisa White54

Melissa Stewart said:Thanks, Lisa White54, we’re gonna need it. Just gotta touch on what you said about everyone at the MD Anderson Cancer Center being great. We rolled in there around 1 PM and didn't even see a chief resident or anything—just some random doctor who looked totally clueless. She basically told us there was nothing they could do because it's a 16 cm tumor. Maybe just radiation to dull the pain, she said.
That was her take, and back then, we didn't even have a 100% confirmed PhD diagnosis from Salat yet.
She made up her mind based on some old records from the hospital since we didn't have a fresh CT or scintigraphy ready. We were honestly just panicking and looking for help because our own local specialists couldn't even string two sentences together regarding Ewing.
Dad has her "paperwork" somewhere, but I don't know her name and frankly, I don't care.
But seriously, how could she just send us home thinking, "That's it, we can't even fight this"? Dad actually thought he wouldn't make it back alive!

Does anyone know how to get in touch with that healer, Marijan Kera, from Bibinje? He was on that one investigative show.

I feel for you, but honestly, when I was at the MD Anderson Cancer Center, I think I just got lucky and ran into a really solid doctor. It was for my son, and the doc was genuinely amazing.
Hang in there, Anita.

Susan Ruiz76 said:Ružica, please give me some specifics on what’s actually going on with your husband. It feels like mine and yours are dealing with almost identical cancers, so obviously I'm hyper-focused on everything. On September 22nd, you mentioned he was home, discharged from the hospital, and waiting on biopsy results. Well, yesterday he already had another bronchoscopy. Where? Why? Is it an enlarged lymph node or a brand new tumor? Thanks!

I am seriously hitting my breaking point right now.
My husband was let go from the hospital this past Friday for the weekend, with the plan that I'd call the doctor Monday to see if he should head back in or stay put, depending on those bronchoscopy results. When I finally got through to the doctor, he told me my husband *has* to go back to the hospital because they need to run a rigid bronchoscopy under general anesthesia. Apparently, the fiberoptic results were fine, the pleural effusion looked okay—nothing was found. So I asked, "Then what about that new tumor?" And the doctor just goes, "Oh, that might just be a lymph node, it's probably nothing." But he still insists on the rigid bronchoscopy to figure out the next steps. I called again yesterday, and he said the results aren't even ready yet and that he didn't see anything unusual. Meanwhile, my husband's condition has suddenly taken a massive dive. He's in agonizing pain, he started coughing up blood (which I'm assuming is from the procedure), and this morning he told me his head feels swollen. Now he wants to come home for the weekend, and I honestly have no clue what to do. I'm lost. If the tests are supposedly "fine," why is he getting so much worse? I find it hard to believe the pain is just from the anesthesia, since it was light sedation and the whole thing was over quick.
Now I'm just trying to get a hold of the doctor, but he's totally ghosting my calls. I don't even know what questions to ask anymore. I feel so stupid and completely helpless. I have no idea what's happening. I'm just spinning my wheels here. If someone could just tell me something, anything...

Melissa Stewart said:I'm rushing because my ear is killing me, so I messed up. It's hitting the hip bone, the iliacus muscle, and the gluteal muscles.

Anita, I’m sending you all the strength in the world.

rustyscout31 said:...I think we're all getting a little too worked up over this topic, which honestly deserves its own dedicated thread... I feel like Forest got what we were trying to say, and if she didn't—well, she won't. Let's just get back to helping each other out, like we've always done...
Angela Wright... go for it!👍

I'm with you. Let's just keep looking out for one another.

Angela Wright said:I wouldn't say I totally agree with you there. I’ve got doctors in my family, so I see firsthand what they deal with and everything they have to put up with.
The real issue, if you ask me, is how much they refuse to cooperate. They can be super stubborn, pretty passive, and honestly, there's way too much ego involved. That lack of teamwork is a huge deal—you need it to actually succeed in medicine—and when it's missing, the quality of care takes a massive hit. Not every problem here is about money.
Basically, everything mentioned is just typical for American society, but we really feel it through the doctors since we've been dealing with them so much lately.

I wasn't even talking about all doctors. There are some truly wonderful people out there. But I'm talking about the ones who act like they're untouchable. Unfortunately, based on my experience, there are plenty of those at our local community hospital.
It's different at specialized clinics (like the unnamed or MD Anderson Cancer Center). The doctors there are more down-to-earth and approachable. There are amazing doctors out there. And thank God for them.

Maria Jones40 said:Why aren't doctors speaking up? It’s pretty simple, really. They go home and feed their kids just like everyone else. They're scared of the system they work in, they hate being blamed for everything, and they don't get the support from patients that you claim they should (which is basically the opposite of what you're saying here). Plus, they're under massive public pressure, and in our system, things are basically run by political cronies. Eventually, they just burn out and become apathetic. They just wait until they get home to feel like actual human beings again.

Doctors are apathetic! And why? Look, they picked this career path themselves. They pull in great salaries, they have high social status, they walk around like they're gods, and everyone bows down to them. Whether they're at the clinic or out on the town, they always act like they're above it all. And why would they fear "the system" when they're the ones calling the shots? Honestly, shouldn't it be the patients giving *them* the support so they aren't too terrified to do their jobs and make enough money to feed their families?

Where's the part about who actually pays those doctors' salaries? Who’s out there providing real support to the sick people suffering through this? Every single patient has a family behind them, desperately begging for help. Some people get lucky, some don't, and some... well, they just get left behind.

slyseal28 said:Look, could you actually list the insults you're talking about? And I’m asking you again: what's the move when dealing with doctors or oncology department heads who just drag their feet on approving treatments? I could literally forward you my email threads with several seriously ill people who were denied the care they needed.

My husband was one of the lucky ones who hit the jackpot with incredible doctors, but we've both heard way too many stories from patients who didn't get that same luck.

What you're saying is just wild. How do you even know individuals won't step up? Are you just throwing out an opinion here, or do you actually have receipts? And where exactly is this "old way" of doing transplants being abandoned? Can you point us toward any specific clinics actually using these new methods?

Way to go, slyseal28!

Maria Jones40 said:Personally, I’d welcome it. While you're waiting on diagnostics, just stay chill—don't go in there swinging or getting aggressive, because honestly, that just backfires. Just ask questions. Get the facts. They’ll tell you what you need to know, and regardless of all the rumors flying around, nobody's just going to leave you out in the cold.

Look, I'm not sitting here being aggressive or pissed off. Honestly? I just want straight answers. Not some vague, "maybe this, maybe that" nonsense I have to interpret myself. Over these last four years of treatment—dealing with everything from the initial diagnosis to the chemo and radiation—I’ve been carrying the entire weight of my husband's illness on my own shoulders. I've had to juggle a million different issues, just figuring things out as I went, doing what I thought was best. Maybe I messed up somewhere, but luckily, I haven't. When symptoms popped up—and man, they popped up constantly—it wasn't like I had anyone to turn to for advice. It’s always the same thing: "That's just how it is." And what does that even mean? What am I supposed to think about that? There were so many times I felt completely alone in this world, like I had no one left to ask because the answer is always the same. Nobody would have even suggested a CT scan if I hadn't basically begged a doctor at the general hospital to recommend one myself. In four years, he's only had four CT scans total. It's like nobody cares, like whatever happens—or is going to happen—is just "meant to be." I absolutely hate that phrase.
For four years now, my husband has been on Peptoran, Praxiten, and using Durogestik 25 patches. That’s it? Because apparently, "that's just how it goes," and I’m just supposed to deal with it. Of course, it would be a hell of a lot easier if they just gave us the truth about the results they're working on right now. Because no matter what they find, I need to know so I can actually help him. But once again, the whole thing will fall on me, because apparently, that's just how it has to be...

My husband is heading in for a rigid bronchoscopy today. They’re doing it under general anesthesia, so we’ll just have to wait and see what the doctors actually find.
Honestly, I’m just praying they give me the straight truth. Not knowing is the absolute worst part—it just makes you lose your mind. My husband has been dropping weight so fast lately, it's scary. I can tell something is seriously wrong, and he knows it too. He feels terrible and he's in pain. So, how am I supposed to just sit here and act like everything is fine?
And look, don't anyone start judging me. I wouldn't be acting like this if I wasn't terrified. I would give anything in this world just to have my husband healthy again and to actually believe that he's okay.

Melissa Stewart said:I didn't get a chance to mention that my dad was first seen in Neurology, and then moved over to surgery.
After a mountain of pelvic X-rays, CT scans, and MRIs, they somehow MISSED a 16 cm tumor. Like, seriously? After the surgery, they did another CT, and the report just says "no significant changes" and calls it a day!!?!!!!
They claim it’s an emergency, right? But we found out from the surgical nurse that they had to call in every single surgeon on staff once they actually opened him up because they’d never seen anything like it.
So much for that "urgent" timeline, huh??
Look, I get it if they didn't know exactly what they were looking at, but for crying out loud, shouldn't the chief surgeon realize something is way more serious than just some inflammation???
And then we’re stuck waiting three weeks for results, and when the doctor who was just filling in finally showed up, he just mumbled something about a bone tumor in the intestine. Then he just stood there, silent as a grave. In that moment, I was so shocked I couldn't even process where that part of the body even was. He just kept quiet. I tried asking if it was early stage, and he goes, "Well, not really." Asked if it had metastasized, and he's like, "No." He literally couldn't string two decent sentences together—stuff he could have easily looked up online. Apparently, in 23 years of practice, he'd never run into a tumor like this in an adult.
And the kicker? The report we waited three weeks for wasn't even definitive and needed more work. We had to wait another week for an oncologist from out of town to tell those idiots they should have sent the tissue to Shalat immediately.
We ended up carrying two blocks of tissue ourselves, and the Pathologists could barely find one of them.
I'm not saying all doctors are the same, but that’s just how it went for us at the local hospital.
Finally, we're at Rebro seeing Dr. Šantek, and honestly, I can't say enough good things about him. Most importantly, he’s a human being who actually respects his patients. To him, we aren't just numbers on a chart; we're actual people.

Does anyone know how to get in touch with that healer from Bibinje, Marijan Kero?

My experience with the general hospital was just as nightmareish. Pure negligence. That's why I was so relieved when he was transferred to Jordan. They actually put in the effort there, diagnosed the carcinoma immediately, and jumped straight into treatment. If he’d stayed at the general hospital for even a few more days, he would've died—they would've been cleaning him up off the floor. This was four years ago, but I haven't forgotten, and the thought of being treated at that general hospital still creeps me out.

Look, at the end of the day, I work in healthcare myself, so I’ve seen how the sausage gets made. Honestly? If I knew less, my life would probably be a lot easier.

Linda Peterson37 said:Yeah, right, because it's just so easy to just swap out an entire city, the hospital system, your whole life, and everything else overnight... I mean, I don't think there's a single place on Earth where that actually works like that...

Exactly. And don't even get me started on the money side of things. When someone gets sick, man, you have no idea how fast your bank account drains out!!! So yeah, tell me again how easy it is to just move cities or switch up hospitals or jump to another state! I'm barely scraping by as it is, yet some people who wouldn't know a medical crisis if it hit them in the face are sitting there acting all high and mighty. Nobody except us folks posting here actually understands how much a life can flip upside down in a single morning. But we're all tough, leaning on each other, you know? We get it. We've all been knocked down and had to claw our way back up. People who haven't lived through that? They don't get it, and honestly, they don't have any right to judge.

Maria Jones40 said:Seriously guys, what is wrong with you? I honestly can't believe this. What century are you people living in? These days, things are actually discussed openly. Obviously, they don't tell the patient every single little detail—because, hey, sometimes you don't need to know everything—but the family is always kept in the loop. Especially when we're talking about serious illnesses. The family knows absolutely everything down to the last detail, provided they actually want to know and can wrap their heads around it. Now, if half the people in America are too clueless to understand what's happening, that’s a different story entirely. But you don't have the right to constantly trash medical staff or spread nonsense and lies.

Since you're coming for me, let me make one thing clear: I am not "clueless." Go pick on someone else. Besides, every single CT scan we've done shows shadows on Jordan, and I have the copies right here. I never said I forgot all the CT scans—I meant I missed two of them! Look, I have every right to forget things or mess up a date; we've been fighting this disease for a long damn time. Sometimes things slip my mind. But the doctor treating him? He doesn't. I have never once trashed my husband's doctor. He's the only one treating him there, and so far, things have been good. I never said the doctor was at fault, or anyone else was responsible for this situation; I just said I wanted a straight answer. I've spent the last four years reading every medical journal under the sun and staying informed. You really think my husband would have lived this long and this well if I were some illiterate idiot who didn't care what was going on? How would you act if someone close to you got sick?
Nobody here is playing games, trashing anyone, or lying about the medical staff. Thank God they exist to help us. We know they aren't miracle workers, but we know they do what they can within their field. And I am grateful to them for every bit of help they give.
And you, honey, you clearly have no idea what actual illness looks like, or how much grit and courage it takes to fight for your life. I'm guessing you work in healthcare? Well, I work in a hospital too, even if it's just a little bit!

silentfalcon52 said:First off, I just want to wish everyone here the best of luck with their treatment—whether it’s for yourselves or your loved ones. I lost a relative to cancer not too long ago, so I get it. But honestly, the reason I’m even posting is because of something else entirely.
I’ve noticed a lot of skepticism here, almost like people have this built-in grudge against alternative therapies. I don't really get it. Some folks claim nobody ever actually gets cured using those methods without standard medicine stepping in. How can you be so sure? I was flipping through a magazine the other day about this stuff (not trying to run an ad or anything), and there were plenty of people sharing their stories. Even if they didn't get a full cure, they talked about stopping the progression. Look, even if only 5% of those stories are true, that’s still a huge deal.
I think most people just have a skewed perception of what "alternative" means. I read a news article recently about lung cancer treatments where they mentioned one specific drug that completely cures 5% of patients, stops the growth in 20%, and does absolutely nothing for the rest. That just proves that every patient deals with their own unique version of cancer and a body that reacts differently. Should the people who didn't respond to that drug call it useless or a waste of money? Of course not. It's the exact same thing with alternative options. It works for some, it doesn't work for others. It comes down to the individual—their mindset, their willpower, all that stuff. So, saying someone is just getting rich or famous by curing someone this way is kind of misplaced... it just happens that for some people, the alternative works, and for others, it doesn't, just like any "standard" medicine.

I’m not some alternative healer or anything, and I’m definitely not pitching anyone.

I just want the best for everyone. Ideally, one day we won't need this subforum anymore, but in a good way.

Take care, everyone.

Then why on earth do they charge so much for their "help"? If I truly had a gift from God to help people, wouldn't it be wrong to profit off someone else's suffering? When my husband got sick, it was wild how people would track me down from everywhere, claiming they had the magic cure for him. I always wanted to know the science behind what they were doing—what was actually in their concoctions—but they kept it all top secret. Since I'm naturally a skeptic and prefer to play it safe, the whole thing felt shady to me, so I turned them down. Instead, I stuck to buying expensive supplements to boost his immune system from brands like Golden, Herbalife, or things like aloe, noni, and Swedish bitters... Basically, I needed to see the ingredients list to make sure I wasn't causing more harm than good.
Everyone has their own take on alternative stuff. People should choose whatever they feel is right. As for me, this is where I stand.

Susan Ruiz76 said:? My husband’s CT scan from last week shows the tumor hasn't moved an inch or changed size at all, everything else looks fine, but he’s started coughing way more than usual. I can't tell if it's just some random virus or a cold making things worse because of his underlying condition. Any idea? Have you dealt with this before?

My husband used to get those intense coughing fits pretty often. He usually takes some old-school lichen syrup—it helps thin out the mucus so he can actually clear his chest. Honestly, even a tiny little cold can trigger a massive coughing spell for him. If he starts running a fever, though, he definitely needs to go grab some antibiotics.

Man, I really wish everything was fine. I want to believe the doctor when he says things are looking good, but honestly? I’m shaken up. I’m scared. If he hadn't come at me with that heavy news about a new tumor, I might be handling this differently. But now... I’m just terrified. It hits harder because we’ve spent almost four years thinking we finally won this fight. If that tumor is back and things are shifting, I need to know. I have to face it so I can gear up for round two. Because if I have to go again, I'm going all in. I just need the truth first..

Susan Ruiz76 said:Lisa White54, please tell us what happened so suddenly. You said everything was fine back on August 25th when your husband's results looked good—so how did he end up crashing like this in a Small town in the Midwest? Did he have sudden coughing fits, a fever, or anything? My husband's tumor is showing up at the exact same size and in the exact same spot on his CT from last week; everything else seems okay, except he’s started coughing way more. I'm not sure if it's just some virus or a cold getting worse because of the underlying illness. Have you dealt with anything like this?

So here's the deal: we got the CT scan results from our local hospital, and they're showing a 20 x 13 mm tumor, plus pleural effusion and some weird pockets of air and gas. The doctors who looked at them told me everything looks fine. I actually compared them myself to an old CT from a Small town in the Midwest back in 2005, where there was a tumor in that exact same spot measuring 20 x 15 mm. I was totally convinced it was the same thing—that the tumor had just stayed the same size. I even took the CT scans and the report straight to my husband's doctor at the clinic in the Small town in the Midwest. He looked at them and told me it’s a brand new tumor. He claimed the old one was gone and this is something entirely different, and honestly, he couldn't explain where the fluid and gas in the lungs were coming from. My husband stayed in the hospital thinking it was just that old, dormant tumor, but I was freaking out. Once I got home, I realized there were two other CT scans between the 2005 one and this one. I checked them, and yeah, there was no tumor in those. So this is new. They did a bronchoscopy and tapped the pleural effusion. And now? The doctor tells me the bronchoscopy looks fine, no cancer cells found, and we're just waiting on the cytology from the fluid tap. He keeps saying everything is just like before. When I asked about this "new" tumor, he basically brushed it off, saying it might just be a lymph node... he even admitted he doesn't really trust the scans from our local hospital. I literally brought him the images so he could see for himself! Then he just discharged my husband. I have to call today to get the biopsy results. I bet they'll say everything is fine again. The tumor markers will probably come back normal too. But my husband isn't "fine." He's doing worse. His shoulder, arm, and back pain are getting intense. He's losing weight. I told the doctor, but he just shrugged and said it's fine. Everything is great.
I don't even know what to think anymore. Is the CT lying? Should I go find a second opinion somewhere else? I'm terrified the doctor is just trying to spare my feelings, or maybe they don't want to—or can't—treat my husband, so they won't tell us the truth. Honestly, I don't trust anyone anymore.

wiredcrane32 said:Look, Lisa White54, I really hope you didn't feel targeted there. If I stepped on your toes, my bad—I feel like an idiot now, but I seriously didn't mean anything by it. I was just trying to say that for me, it’s way easier to just live being happy that the tumor is gone, rather than living in constant anxiety, freaking out that it’s coming back. Honestly, I was pissed when the doctors told us straight up that Dad wasn't going to make it, because living on hope felt better than mourning him every single day... eventually, I pulled myself together and convinced myself he’d pull through. This might sound totally messed up, but my sister and I constantly lied to him about how he was doing. We kept telling him he was recovering when he wasn't. When he started radiation, we swore up and down that the tumor was shrinking. He didn't get it at first, but eventually, he just rolled with it—maybe he thought we were seeing things better than he could since he's always watching us. You could see he was happy, and that gave him the strength to keep fighting. When we forced him to eat, we'd lie and say he was actually gaining weight just to get him to swallow more. We even went overboard with those supplements, bringing him stuff and claiming some specific person got cured just by taking it. Of course, since he was so lost and grasping at straws, he believed everything we said. Lisa White54, wouldn't it be easier for you if your doctor lied and said things were improving, even if you knew deep down they weren't? I don't know, it just felt easier for me. I am so incredibly sorry you're going through this all over again; I can't even imagine. But isn't it easier knowing you guys managed to fix him once before? Why couldn't you do it again? You guys can do this—you've already proven it, and I have zero doubt. Just kick this thing's ass once and for all!🙂

I totally get where you're coming from. You have to stay positive. Believe in miracles. They happen. No matter how brutal things feel right now, I believe we can pull it off again. When my husband first got sick, he wanted to know every single detail. I didn't hide anything; he was fully briefed and knew exactly what he was up against. Back then, he was mentally strong enough to handle the truth and think clearly. Now, things are different. I have to change my approach and fight this from a whole different angle.

My husband got hit hard almost four years ago. Bronchial and tracheal cancer. We're talking a tumor the size of a man's fist. He was choking on blood, coughing up bright red stuff... it all just happened out of nowhere. One minute everything is fine, the next he’s in a general hospital for ten days before they rush him to a Small town in the Midwest. He went through the whole gauntlet—chemo, radiation, you name it. It was brutal. But he took it on the chin and he won. For a while, we thought we actually did it. No sign of the tumor, he felt great, no issues at all. We overhauled our entire lifestyle, basically rebuilt our whole world around his recovery. I truly believed we had beaten cancer.
But man, was I wrong. It feels like being thrown right back to square one. For a few days, I was just... gone. Totally non-functional. Just this massive wave of disappointment, sadness, and pure rage hitting me all at once. But look, I'm back on my feet now. I'm ready to go to war again for tomorrow. I'm not backing down. We're waiting on the next round of treatment, and then it'll be home care. Once he's finally back home, things are going to get a lot easier.

Nancy Hernandez43 said:It’s frustrating how you always dodge the question when things get medical... I’m looking for answers here, but you’re just constantly playing the waiting game!

Look, just being there and showing her love—that’s what gives your wife strength. If she stays strong now, she'll be way better prepared once the chemo actually starts. You guys are in my thoughts.

Thanks, Nancy Hernandez43.