Right now, I’m scheduled to get some Zometa, followed by an appointment with my oncologist. If I can squeeze it in, I might head over to the Mayo Clinic to try and get a "second opinion"...
Someone was asking about Pimezon and Dr. Samia too... honestly, they haven't told us anything more than our own hospital oncologist already has. They didn't offer any recommendations. Now, look, Dr. Samia is a top-tier doctor—I actually suspect he might be battling cancer himself—but Dr. Cepulic? He explained everything to us in much, much greater detail than anyone else. He actually laid out all our options and even brought up treatments and medications we hadn't even heard of until then. So, if you're asking me, I highly recommend Dr. Cepulic.
Kevin Bishop10 said:Why not? What’s the ballpark price for a consultation?
About a year ago, I paid for a session that lasted roughly 45-60 minutes. $233.. But honestly, I don't regret spending a single cent... he went through every single document with a fine-tooth comb and explained everything in detail. Plus, you can actually receive treatment from him there too.
And I really thought that was how it would go... that was my biggest fear, honestly, but I kept hoping against the odds that I was wrong.. thanks.. we'll talk to the doctor and see what the next steps look like..
My father is currently on Xeloda and Avastin. The treatment was working quite well until about six months ago... since then, his markers have been climbing by roughly 10 points every single month. Now they’ve hit around 100. Our doctor keeps insisting it’s nothing significant, saying it doesn't even matter. How could it not matter? He flat-out refused us—basically told us there’s no point in seeking treatment in Germany—even though the specialist in Germany said they could handle the liver metastases if we just addressed the primary tumor here first. He won't offer any experimental drugs and refuses to change the current regimen, regardless of how much those markers rise. What specific criteria are used to decide if a patient qualifies for FOLFOX?
For context... we're dealing with a mucinous adenocarcinoma of the colon. Initially, the tumor was about 5cm and there were three metastases on the liver; the largest was 10cm, but now it's down to 4cm, and the other two are barely even mentioned in the reports anymore.
I took the results to a private specialist, and that doctor told me our current physician should have switched the therapy already. He has no idea why he hasn't. He also brought up the possibility of surgery, which our doctor rejected from the very beginning and still won't even suggest, despite the excellent response to the therapy so far.
That’s my perspective, and I've had it confirmed by a private doctor, so what on earth is our doctor doing?? I honestly have no clue. So, is it actually difficult to get onto FOLFOX? Why hasn't he switched him over yet?
Hey everyone... I’ve posted here before—maybe > remembers me. My father is battling colon cancer that has already spread to his liver. He was supposed to start chemotherapy today, but they pushed it back because his white blood cell count is too high. They’re claiming it’s an infection and rescheduled him for next week. What are we actually supposed to do to fix this? Should he be on some kind of antibiotic to get those levels down? Nobody gave us any direction—they didn't even say if we should head over to his primary care physician.
Does anyone here know anything about that experimental "Trojan Horse" therapy? Does anyone know what phase it's currently in?
Also, has anyone ever gone private to see Dr. Aleksandar Soltyšik? I'm looking for real feedback on his approach to treating tumors.
Rachel Williams said:My mom dealt with chemo side effects where she completely lost sensation in her fingers and toes. They ended up putting her on Neurontin and Neurobion for it. It takes some time for those to actually kick in, but right now, she’s just dealing with some irritation on the pads of two or three fingers. The annoying part is that those drugs are technically categorized for things like epilepsy or bipolar disorder, so if you want them for anything else, you basically have to get a private prescription and pay out of pocket. Neurontin was about $20-$10, and Neurobion runs about $100-$120, but you get a pack of 100, so in the long run, it isn't exactly a financial disaster... As for her hands, she’s applying Neutrogena dozens of times a day, which has really helped cut down on the peeling.
Thanks so much... I feel a bit better now. Honestly, I was starting to spiral thinking about all sorts of things—I mean, literally not being able to feel my fingers... In the meantime, we managed to get an appointment scheduled, so I'm hoping everything gets sorted out soon.
placidwalker452 sending you all my strength. hang in there..
Carol Price6 my dad was exactly the same way at first.. he even signed those papers saying he was going home on his own responsibility.. eventually, he adjusted a bit.. he didn't want to tell anyone anything, but I found his test results.. I started digging, told him I knew everything, and now we're fighting this together.. lately, he's just left everything in my hands; I handle the doctors and report back to him.. slowly, everything will fall into place...
Listen, please.. does anyone know what might be happening? My dad's hands have darkened, his skin is peeling, and worst of all, he has absolutely no sensation in his fingers anymore!??
He's currently on Xeloda and Avastin.. could this be a side effect?
Angela Wright said:So, did the radiologist actually get to see that previous report when they were doing this new scan? I honestly think the smartest move is to hand over both reports for a second opinion—which is exactly what you're doing anyway, right? Fingers crossed everything stays steady.
That’s the thing. The doctor we’re seeing for the follow-up supposedly said it was nothing to worry about. But I say "supposedly," because whenever my dad goes to his appointments alone, I can never be 100% sure if he's telling me the truth just to keep me from worrying...
Yeah, it was showing up on the first set of results, but back then they said it looked benign. Now, looking at this latest report, they’re using these heavy-hitting terms—"osteoplastic metastatic changes"—and honestly, it’s got me spiraling. And then there's my dad, insisting the doctor said it’s nothing to worry about... I just don't get it.
Anyway, thanks. We'll just have to wait and see; we're sending all the records over to Germany.
The CT scans through the bone window show hyperdense nodular shadows at the level of the 9th and 11th thoracic vertebrae—there's an 18mm one at the 11th Th vertebra and a 14mm one at the L4 segment. These are highly suspicious for osteoplastic metastatic changes.
Does this mean it has spread to the bones, or could it possibly be something else???
Back home, our CA marker dropped all the way down to 19-9. Since anything under 37 is considered normal, we were absolutely over the moon,
Every single test result from last week came back perfect. Then, I read this tiny note saying they found something minor on the pelvic bone. Could that be anything other than a metastasis? And does finding it there mean it's spread to the bone, since the pelvis is bone? Or can it just settle somewhere else without involving the bone itself?
brisklynx51 please accept my sincere condolences..
Dennis Carter2 I’m not sure how much that oil actually heals anything, but it certainly isn't a cure.. you should pick up some Beta Glucan and some Native propolis for him too. Beta Glucan is a powerful immunostimulant that prevents cancer cells from surviving in the bloodstream and latching onto other parts of the body, and Native propolis is great for fighting off infections..
My dad uses the oil as well, but he decided to go through with chemo. He always maintained that the oil works better when you aren't doing chemo, but now.....
Carl Kern66 please accept my most sincere condolences... and just like Zachary Howard2, I truly believe there’s a more beautiful place waiting somewhere out there, and that one day, we'll all be together again..
Angela Wright, my dad went over to Cleveland, and unfortunately, it’s still just that same old da Vinci surgical robot. Nothing new to report there, except they’re actually starting to use it for colon procedures now, whereas before it was mostly just prostate stuff..
So yeah, just thought I'd mention it, since there's zero new info otherwise.
Yeah, there’s all sorts of info floating around. They mentioned it needs to be under 4 cm, but I can't quite wrap my head around if that means just one single spot or something else. Usually, in our neck of the woods, they'd just go in surgically... but whatever. Once she finishes her course of Xelode, she still has three cycles left. Then it's PET CT, and after that, I'll grill the doctor about proton therapy. The doctor himself said there are several options on the table, so we'll just have to wait and see...
Honestly, with all this chaos and euphoria, it didn't even cross my mind to think about the costs involved. Do you have any idea—even just a rough ballpark—of what kind of numbers we're looking at here?
Is there any kind of coverage available? Like, if our doctor recommends a specific route, is there any chance we could get something out of Medicare, or is all this treatment stuff just strictly out-of-pocket?
edit: Angela Wright, thank you so much for being so incredibly patient with everything... they say learning patience is one of life's biggest lessons, I guess.
So, after spending a few hours digging into this, here’s what I’ve gathered: we're talking about a robot—essentially a laser scalpel—that can pinpoint tumors within the body and blast them with radiation without touching any surrounding organs. It hits the tumor and nothing else.
Now, if I've managed to wrap my head around this correctly (and maybe I haven't), the idea is that it essentially freezes the tumor in place for a while—say, five to ten years. Am I on the right track? And in certain instances, it actually shrinks them down...
I just realized this isn't exactly groundbreaking news either, and apparently, people have already been debating this on the forum...
I finally managed to push the doctor to discuss other treatment options. I just couldn't stomach the idea of my dad going home just to "manage" things with nothing but pills... there is always another way, always more options. For instance, CYBERKNIFE technology is available in Germany and I think a few other places too—I only remember Germany specifically, but you can easily look that up on Google. What stuck in my mind, though, was that they don't just proactively offer this to patients here; I have no clue why, but it's not the standard pitch. When I went in asking about radiofrequency and microwave ablation in Italy, the specialist explained everything clearly and actually suggested the CyberKnife. The most important part? We just need to get five CT scans done (he’ll suggest how to get the referrals from a primary care physician without too much of a fight), have them translated into English, and then he sends inquiries directly to those hospitals. If the results show you qualify for the therapy and you're ready to go, then great... From what I've gathered, I assume you can also email your own records yourself just to gather more information...
To be honest, I have no idea what the cost looks like or if Medicare covers any of it, but sending out these inquiries is free and doesn't commit you to anything at all...
If anyone happens to see this and has info on this method—or better yet, actual experience with it—please, let me know...
Amanda Miller69 said:Sometimes I feel like everything has just gone completely sideways. Instead of my father-in-law getting better, things seem to be spiraling. It’s already been three weeks since the surgery. That muscle—the pylorus sphincter—has cramped up and is blocking food from passing through. They tried relaxing and dilating it, but nothing seems to be working. My mother-in-law was with him yesterday and overheard something about a bacteria infection (I assume it's one of those hospital bugs) causing the diarrhea. They’ve even had to put him in diapers. I called him yesterday, but he could barely talk because he said he couldn't even hold the phone in his hand😢. I honestly feel like I'm just digging a hole. The helplessness of not being able to do anything except badger doctors to fix this is killing me. They told me if it doesn't relax after two or three more dilations, they'll have to go back in surgically. He's so weak; I don't even know if he could survive another operation. What am I supposed to do?
The absolute worst part is that feeling of total impotence—knowing you can't actually help, so you just end up running around after doctors hoping they can somehow pull a miracle out of their hats. It was exactly the same with my mother-in-law. In the end, my father-in-law ended up fighting with his sisters and the medical staff because he felt powerless, and frankly, the doctors couldn't solve every single issue either. There was always something new. We even started wondering if the doctors made a mistake somewhere along the line because things weren't improving at all, even though she caught it relatively early. It wasn't ideal, but she had the surgery followed by chemo and radiation as a precaution... or so they said.
It's such a sneaky, insidious disease. Just stay strong... I can't offer much help, but I certainly know what you're going through.🙂
Angela Wright everything I managed to dig up online mentions some kind of da Vinci robot used for prostate cancer surgeries over at the Mayo Clinic, and now they're talking about moving toward the large intestine... I really hope that's not what's happening, and that there's some new treatment out there that people just haven't heard about yet.🤷