Posts by Angela Wright

dustyscout8 said:Is there perhaps a doctor or an oncologist here who would be willing to look at some test results? I just need a second opinion and maybe some advice. We feel completely helpless right now...
Once again, I’m asking: what kind of diet works for someone battling esophageal cancer when they can't stop vomiting? What are you all feeding your loved ones? I'm looking for any idea—something that might actually stay down in the stomach instead of coming right back up immediately...😢

Here is some dietary guidance specifically for esophageal cancer.
http://www.cancerresearchuk.org/abou...ving-with/diet
Hang in there.

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Matthew Bishop44 said:I’m not sure if this falls under neurology or psychiatry, but it’s a disgusting feeling—like I’m dying for a split second. It's happening more and more often lately.

You absolutely need to get a referral for a neurologist immediately to rule out seizure activity. Do it ASAP.

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dustyscout8 said:Angela Wright, thanks for being so kind. You’re incredibly dedicated and you help us out so much! :*
Yeah, I managed to catch—unfortunately—that they’re specifically looking for patients who haven't undergone any prior therapy. 😢 No worries, we'll just keep digging and searching... HUGE THANKS!

Once you click through to the diagnosis option, it opens up a map view. From there, just scan the surrounding countries to see what might be applicable.

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ruggedfox11 said:I actually fired my doctor because of this kind of nonsense (even though he wasn't technically wrong). Before we had an official diagnosis, his brother and sister-in-law showed up from Europe claiming they already knew the whole deal because they’d heard it through some connection from his close friend. They basically told me his doctor was keeping him in the dark just so I wouldn't "lose my mind," assuming I couldn't handle the truth because I'm just a kid.
I marched straight into the doctor's office and tore into him. I demanded to know who gave him the right to lie to me—since I'm clearly not some child who needs to be shielded from reality—and even worse, who gave him the right to discuss a patient's private medical status over the phone with someone he didn't even know for sure was family.
He tried to claim it wasn't true (which it wasn't; he had shown me every single test result personally before all this drama), arguing that doctors don't always disclose the full extent of a situation unless asked directly, because they can't gamble on a person's mental stability. He essentially said it's up to me how much my husband finds out.
When the second doctor (and later his primary specialist) admitted him to the hospital, their first question to me was whether my husband knew the details.
As it stands, he only knows it's lung cancer. He didn't care about anything else besides figuring out how many rounds of chemo he'd have to endure.

This might be worth looking into.
https://clinicaltrials.gov/ct2/show/...ow_locs=Y#locn
They haven't started recruiting patients for this study yet, but once they do, it will be available in Small Town, USA, at Catholic Health Initiatives and the Mayo Clinic. You should check in on when they start and try to get him enrolled.

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When it comes to pain management, you need to hunt down a specialist in pain medicine. Don't just settle for whatever they hand you; demand that an anesthesiologist titrate the exact dosage of your medication cocktail and actually walk you through how to incrementally scale up the dose as needed.

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dustyscout8 said:Angela Wright, I actually got that link to work, but I’m not entirely sure what the point is? Is it just showing how many studies exist for this specific disease? I had to search for "pancreas adenocarcinoma," and I honestly don't understand why it’s spitting out these specific results for that diagnosis. Maybe it's just my shaky English... And regarding what you wrote about trying to get into some smart new drug trial? Where exactly can we even try to apply? Ugh, I'm totally lost.😢
Yeah, I'm right there with you on that comment—instead of blowing cash on houses, apartments, or cars, it feels like we should be squirrelled away money from our very first day on the job just so we actually have something to fall back on when we get sick. Because once you're hit with an illness...😢

Look, they've published studies covering everything from brand-new drugs to various types of supportive therapy. You can click into any one of them to see exactly where they're being conducted and what the requirements are.
If you need a hand navigating Google, just let me know.

To start off, this study is being run right here in the States. The only catch is that they mention the target group is patients who haven't tried any other therapies yet, but it's still worth asking about.
https://clinicaltrials.gov/ct2/resul...cr=Open&map=EU
This shows the total number of studies across different countries in the US related to pancreatic adenocarcinoma.


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dustyscout8 said:ruggedfox11, yeah, obviously... it’s all just about the money.😢 It’s disgusting, honestly—I don't even know what to say. This whole country is a mess. You could blame everyone in power or the entire broken system for why we can't save our loved ones, but the reality is that everything is fundamentally backwards. It’s insane that once you get a diagnosis as brutal as cancer, all you get is a waiting game—waiting for their pathetic boards to meet, waiting for "consultations," just endless waiting. They deny you access to more expensive drugs because of their own arbitrary rules. It's a horror show. What does a human life even mean to them? Why isn't the system built so that anyone who gets sick receives therapy IMMEDIATELY?

The truth is, America doesn't have the resources to cover this, and trying to fund healthcare at that level pushes us way past our actual means. That is a brutal, cold fact, regardless of how much we believe that access to medicine should be a basic human right. Globally speaking, our planet is nowhere near achieving that. In fact, there are maybe a dozen countries out there, like Canada or Australia, that actually have systems somewhat organized to handle it.

Example:
A single dose of Yondelis can blow through the entire oncology budget of a local county hospital, or at a major place like the Mayo Clinic, it could swallow a third of the entire budget. So, if you want to ensure ONE person who has a legal right to Yondelis actually gets it, you effectively have to strip away hundreds of doses of other, cheaper medications that countless other people desperately need.
In my view, there is no other choice: instead of saving up for houses or cars, people should be forced to save for those one-in-a-million medical emergencies.

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ruggedfox11 said:Listen, they sent over the discharge papers and called me. They're looking at a 10-day cycle $1667, but they actually "need" 20.

In my opinion, those are just fakes—I call them "mushroom decoys"—because you can get stuff like Mueller or DM way, way cheaper.

I’m with you there. It’s nothing more than beta-glucan. You can buy it in a concentrated capsule form, maybe about $233 per box. It’s much easier to take than the raw stuff, which half the people I know can't even smell without getting sick to their stomach. I’ve heard plenty of stories about people wasting huge amounts of money on supplies that just end up rotting because they couldn't handle them.

As for having a "Plan B," my best advice is to Google clinical studies for new drugs and try to get yourself enrolled. Once you're in a trial and it turns out the drug actually works for you, the pharmaceutical companies will often provide it for free indefinitely, even after the study wraps up. That’s a massive win, especially if we're talking about some incredibly expensive biologic therapy.

https://clinicaltrials.gov

Everything is published here; it’s easily 99% of all relevant global trials. Just plug your diagnosis into the search bar and go. There’s even a world map that shows exactly how many active studies are running in each country.

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ruggedfox11 said:Angela, you mentioned we should consider whether whole-head preventive radiation is actually a good move.
Why though?
What kind of side effects does non-targeted head radiation cause?
What are the actual potential consequences of doing something like that?

Back when I was volunteering with a local nonprofit, I attended an oncology medical conference down in Key West. There was this one presentation by a neurosurgeon who tore into the whole idea of invasive head radiation. His main gripe was that it creates these brain lesions as a byproduct of the treatment itself. It gets to a point where doctors can't even tell the difference between a tumor lesion and a lesion caused by the radiation, making it nearly impossible to accurately assess the patient's status or figure out the next steps for treatment. The brain is incredibly delicate tissue; once you damage it, there's no going back. It’s a total gamble—it's essentially Russian roulette regarding which medical center you end up at, and more importantly, how much of a person's quality of life they sacrifice just to manage their diagnosis.
From what I could gather, the experts aren't even on the same page about this stuff. On top of that, patients are rarely given the full picture, which means they never truly get the chance to weigh the risks and decide if they even want to go through with it.

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ruggedfox11 said:I don't care about any of that. The diagnosis is already on the table. They could at least take the existing scans into account, or maybe order a few new ones of their own. A little flexibility and more actual information would go a long way.
When I sent his records over to specialists in Italy and Germany, I actually got a response—an opinion, at least. It wasn't official, but it was an opinion.
That’s exactly why we’re going through Nikolic.. Dammit, you can't just go around soliciting private opinions without a reason or via some third-party route 😃😃

It’s all about the repercussions. Everyone in the medical community knows everyone else, so when you walk into your doctor's office during treatment and drop a completely conflicting second opinion on them, you're basically applying pressure... if you ask me, that's the heart of the matter.

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ruggedfox11 said:Robin Diaz4, someone mentioned that a single chemo dose—not even a full course, just one shot—can run you $25,000!! If you don't have top-tier health insurance, you're basically screwed.

Man, I can't find any solid data online regarding what they actually charge. They’ve only become transparent since the new regulations kicked in, right around the time her husband got his diagnosis. I did stumble upon an article recently suggesting similar treatments cost about $10,000 abroad.
Wait, can't you just go there for a consultation if you're registered with a different provider?
They are incredibly stingy when it comes to sharing information.
From what I gather, Dr. Nikolic works for them, but he also practices at Mount Sinai Hospital. We were actually thinking about sending him the test results to get a second opinion on the status and whether radiochirurgia is an option after the chemo is done. Try to track down a doctor who can get you in with him.

Oh, right. Prices are just as insane here, especially for biologics. A single dose of something like Yondelis is astronomical. Our healthcare system drains everything we have; you don't truly realize how much it costs until you're backed into a corner.
The only real advantage they have over us is having those specialized centers of excellence and easier access to clinical trials.

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brisksurfer5 said:I need two pieces of information for an oncology patient:

- Besides the main American hospice, where else can I get a hospital bed without waiting a month? Time is precious, and every single day counts.

- How does home nursing work here? Is it handled through a primary care physician, or are there specific associations or private options available?

Thanks in advance for any help.

You can rent beds from private facilities or state institutions that offer inpatient accommodations for a monthly fee (roughly around $133 more or less). They usually have them in stock.
You should also check with the local health department or insurance provider to see if you can arrange it via a promissory note or a credit agreement. I believe those options are available now.
The local medical office submits a proposal for home health nursing, which Medicare then approves. With a cancer diagnosis and a patient who is immobile or has limited mobility, you’re entitled to full field nursing seven days a week, with sessions lasting about 45 minutes each. First, a visiting nurse comes by (usually once a month or as needed, leaving their number to stay in constant contact with the field nurse), and they issue the orders to the field nurse. Think of the visiting nurse as the intermediary between the doctor and the patient. Essentially, the field nurse relays everything to the visiting nurse, and the visiting nurse passes all the info and needs back to the doctor.

steelbadger22 said:Can anyone recommend an oncologist at Osijek University Hospital? I’m completely in the dark here and don't know where to start. The doctor who referred me mentioned abdominal oncology, so if that helps narrow down the search, please let me know.

If you want my honest advice, try to avoid the oncology department in Osijek entirely if you can swing it. Head over to a major center like the Mayo Clinic or even just somewhere in a big city like Chicago or New York—ideally, you want the top-tier specialists. Honestly, everyone I've seen posting from the Osijek area hasn't had much to say about the care there, and frankly, I don't blame them.

Elizabeth Moore4 said:What can you do? Everyone handles things differently, and it’s a brutal test for everyone involved.
The truth is, you have to look out for yourself, but unfortunately, I wasn't wired that way. In the middle of all that pain and grief, I was ready to step in and take his place, to go as far as necessary. He didn't protect himself either, and I honestly believe that's exactly why everything fell apart the way it did.
And let's be real—men and women are fundamentally different, there's no denying that.

But that’s exactly the point. There is no substitute. At the end of the day, everyone carries their own crisis alone. We can help by supporting them through certain aspects of it—which means we end up absorbing their outbursts and dealing with their moods—we can offer encouragement through our words or just by being there, staying silent and present. But when the talking stops, everyone is ultimately carrying their own weight. You have to keep that in mind and stay rational, even when the emotions are hitting you like a freight train. Some sacrifices, no matter how much they are born out of love, are just useless and toxic. Every single person owes themselves a certain dose of selfishness. Looking back now with some distance and experience, I see that more clearly than ever.

Elizabeth Moore4 said:Unfortunately, for some people, pure stubbornness outweighs fear. That was my dad, and that’s how I am too. I think the key is a calm, individualized approach. I used to sit with my dad and patiently explain the "why" behind every treatment or decision. He was incredibly positive, brave, and stayed focused on us instead of himself—even when we were entirely consumed by his needs until the very end. During the illness, he was actually quite gentle, without those big outbursts you sometimes see.
Anyway, whenever he hit a wall or just had enough... it was like dealing with a child. Just endless, patient explanations about why things mattered and how they worked, blah blah blah.
And if he truly decided he didn't want a certain treatment, we supported that choice. We stood by him, period. No moving an inch.

On the days when he felt good, I wanted that moment to freeze forever. Even though I have kids of my own, and I know that might sound heavy, I would have traded everything just to have that one good day stay permanent, like in the movies. Reading Jane's signature brought back a memory—it was summer, and I remember thinking how amazing it would be if we were just at the beach, carefree like everyone else, exactly how life was before the sickness. I wondered for a split second if I'd rather be anywhere else, but then I looked at him, and there wasn't a single place on Earth I'd rather be than right there in that moment. My own heartache felt sweeter than all the happiness in the world because I was with him.

Stay strong and keep fighting because there's no other way. I truly wish you nothing but strength in the battle against this horrible disease.
Happy Easter.

My mom was a stubborn one too. In the end, it turned out she was just dumping her frustrations on us, knowing full well how much we cared. I found myself caught in that cycle of guilt and stress, only to gear up and head to my next appointment dutifully, without question—because she knew deep down she’d already exhausted the alternative options and conventional medicine was the last line of defense. There isn't really such a thing as "just giving up," because in this fight, there is no passing grade.
You just have to sit there and say, "This is how it is." Period. End of story. I'm still here, supporting whatever is decided. But you also have to protect yourself. We aren't inexhaustible resources.

ruggedfox11 said:Look, I know it’s Easter and everyone has their own stuff going on right now, but...
I’m at my breaking point here. He keeps throwing a wrench in everything. One minute he refuses therapy, the next he claims he’s finished with it, then he’s just acting possessed, or spiraling into some dark, depressive hole. When he gets worked up—whether it's because the nausea from the treatment is driving him crazy after a session, or just general irritability before one—everything becomes an issue. Everything.
I honestly don't know how to handle him anymore. No matter which way I turn, I'm wrong. It feels like I can't get through to him, or like he isn't even grasping the reality of his illness—some days it’s like he just doesn't care. It’s pushing me to the edge where I just want to pack up and walk away.

How should I handle this?

The best move is to tell him that whatever he decides, you'll respect it, because you trust he's weighed all the consequences of his choice. He might tell you he's done with treatment, but believe me, fear usually runs deeper than stubbornness.
Don't beat yourself up over the setbacks. Just stay quiet, keep your head down, and keep moving forward.

ruggedfox11 said:Using a nebulizer is the way to go! On a few occasions, I've wondered if the heat could cause internal damage within the bronchi or lungs—you know, like how a fresh wound heals, just something along those lines.

This specific inhaler seems like some kind of mix involving Ventolin and something else; it’s a real medication. Personally, whenever I deal with bronchitis, I usually reach for Bisolvon or Bisolex in an inhaler format.

Just wanted to ask about getting hypertonic solution from the pharmacy?

Would sea water help out too?

Technically, sea water acts as a hypertonic solution, except it isn't sterile since it carries microorganisms within it.
People should take full advantage of the fresh air and the ocean, but only early in the morning or later in the evening. Definitely stay out of the sun. I know people living in St. who were battling cancer and started heading to the beach as soon as it warmed up in April, continuing all through the winter. They claim it boosts their immunity.

A nebulizer is a lifesaver for my kids, especially my little one who deals with asthma. Here is what we use:http://uploads.tapatalk-cdn.com/201...b97f81d1a2.jpg

ruggedfox11 said:He's finishing up his fourth round of Chemo today. He's feeling a bit nauseous, but overall he's doing alright..

Honestly, they drove me absolutely crazy yesterday, so I can't even remember what I was typing before..
Anyway, he's getting some kind of "vial" ampules for inhalation to deal with bronchitis, which helps tone down the coughing..
Here's my theory: since the tumor was blocking the lower lobes of his lungs, now that it's finally shrinking and clearing a path for those lower sections, that might be exactly why he's coughing more.

Is it okay to give him anything for the nausea, like Reglan or Pepcid?

Are you guys using one of those compressor nebulizers, or something else?
When dealing with those kinds of irritations, inhaling a hypertonic solution can really help, so give that a shot. You can pick it up over the counter at a pharmacy like CVS without a prescription. It’s basically just standard saline but with a higher concentration of NaCl.

When you're dealing with stuff like this, nothing beats talking to someone who’s actually been through the ringer and made it out the other side. Ask around your community or just invite someone over for a visit to pick their brain.

jadesailor14 said:I have Uniq and my B-list coverage is totally free.
So you really ought to check with all the different insurance providers to see what their premiums look like and exactly what kind of coverage they actually offer.

Don't mess with me. 😮 They already pulled mine away back here in America. 🙄