Posts by Angela Wright

Mannitol is administered before Dex, but you’ll run into a rebound effect if you don't follow up with the Dex immediately.
Is he receiving anything to help with the pulmonary edema?

Sometimes, just hitting a standard dose of Lupocet or Advil, paired with your usual amount of Tramal or a Durogesic patch, is enough to cover the whole spectrum of pain that's causing the issue.

I have a family member working in palliative care, so I know firsthand that even if they technically know better, they ARE NOT ALLOWED to initiate most things. These specialists might act like they're smarter than they are, but they end up creating massive headaches just by messing up how therapy is recorded on discharge papers. If those records aren't perfect, the hospice facility can't easily write prescriptions or justify them to Medicare. They’re terrified of the repercussions from Medicare—everything from getting blacklisted to having their entire budget slashed—all without any right to appeal or explain themselves if they don't follow the protocol to the letter.
When it comes to pain management medication, it's common knowledge, even within medical circles, that anesthesiologists handle this. They’re the ones who titrate the dosage and find the exact combination of meds needed to cover the full spectrum of pain.
If you're in the area, reach out to the Pain Clinic at the trauma hospital over on Draskovic. I posted a link on the forum a while back with a full list of all the pain clinics and their contact info, so just give it a quick Google search. That’ll be your fastest way to get this sorted out.

They aren't strictly obligated, but honestly, it feels like the ethical thing to do given how broken our palliative care system is here in the States. At the very least, they should suggest supportive therapy options so the family doctor actually has some justification for what they're prescribing.

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Susan Barnes82 said:Thanks for the reply. Unfortunately, he wouldn't listen to me—he’s terrified of hospitals. I can't really blame him, though. We'll see how things look tomorrow. Thanks again, truly.

There are two main ways to handle ascites.
First, you use diuretics like Fursemid or Lasix. In more advanced cases, doctors perform a mechanical drainage. The catch with draining the fluid manually is that while you get instant relief, it often creates a "yo-yo effect"—you essentially clear out space just for the body to rush in even more fluid even faster.
If you have Fursemid on hand and have cleared it with his doctor, you can manage the dosage, but make sure he takes potassium; those diuretics can really mess with electrolyte levels. If he starts having trouble breathing, call 911 immediately, because that usually means they'll need to perform a puncture.
Regrettably, it looks like we've reached the terminal stage where both the liver and kidneys are starting to fail. Just focus on providing the best possible care and ensuring his quality of life remains as high as it can be.

Peter Sanders4 said:I didn't bother checking the thermometer, but I was huddled in bed wearing an oversized T-shirt, sweatpants, and socks, with the space heater cranked up—even though it was a balmy 75 degrees outside. It’s one of those weird situations where you’re shivering uncontrollably while simultaneously breaking a sweat. That’s how I know the temperature was actually high.

This happens to me even if I just eat a couple of lemons... I’m always convinced vitamins are going to do me good, but they always end up screwing me over.

Whatever happened, happened. It’s water under the bridge, so let's not make a mountain out of a molehill. Thanks for the input, everyone.

It doesn't always have to be a fever. You could just be dealing with food intolerances. Get some testing done.

neoncyclist792 said:My brother-in-law passed away yesterday morning—just two months after the diagnosis came in. He was such an incredible soul; I honestly believe God spared him from even more suffering and pain because of the man he was.

I am so sorry. Please accept my deepest condolences. 😢

Chloe Garcia10 said:I have reflux, but it hasn't progressed to GERD. I had a full GI workup about two years ago because of some stomach pains. I don't have any issues at night.
But look, right now I've got this burning sensation in my back just below my neck, sort of between my shoulder blades, and the pain radiates toward the front. Since I'm a total hypochondriac, I am completely hyper-focused on it.

That sounds exactly like reflux to me. Just because you didn't have GERD two years ago doesn't mean you don't have it now. Poor posture plays a massive role in this, too. Honestly, just having acid sitting in your esophagus is enough to trigger symptoms like that. Try taking some Pepcid for a few days and see if things improve.
My husband went through the exact same thing—he'd wake up in the middle of the night gasping for air, totally panicked because he thought he was having a heart attack. Turns out, it really was GERD.

Anyone else dealing with heartburn? Does it seem to flare up more specifically at night?
Basically, poor posture can actually weaken your esophageal sphincter. When that happens, stomach acid travels back up into the esophagus, which triggers that burning sensation and pain you’re describing. It sounds like GERD—gastroesophageal reflux disease. Aside from seeing a physical therapist, I’d definitely recommend booking an appointment with a gastroenterologist.

Kevin Bishop10 said:Really appreciate the reply.

Right now, I’m dealing with pain in my left shoulder, and the skin from my ear down to my jawline on the left side is numb and sensitive. I'm trying to get in to see an oncology radiologist because I have metastases running along my entire spine. But here's the kicker: half the oncology department has been out on vacation since last year, and the other half is juggling their own work alongside theirs, so they won't be able to see me until Thursday!

Until then, I'm just trying to manage the pain any way I can. I actually had to call 911 last night because it became unbearable; I’d been taking Tramal, but it just completely stopped working. They want to switch me over to either liquid meds or patches, but I’m really hoping it doesn't come to that just yet.

Now, one oncologist (who managed to squeeze me in for five minutes) mentioned that the pH test results might indicate possible salivary gland carcinoma?! Does anyone know anything about that?

Head and neck cancers, including salivary gland types, are rare malignancies, but it strikes me as odd that nothing would have been felt until this point.
One of the primary drivers is an HPV infection within the oral cavity.

Kevin Bishop10 said:Why not? Any idea what their consultation fees look like?

I have no clue. Your best bet is just to shoot them an email.

Kevin Bishop10, maybe you should give it a shot over at Dr. Samia's clinic?

Kevin Bishop10 said:The pathology report I got from my doctors implies the cancer could be in the eyelid, upper GI tract, skin, or breast. I had a mammogram, and everything looked normal there. I went through a gastroscopy, and both my stomach and duodenum showed absolutely nothing suspicious. I even had four different dermatologists check my skin recently, and they all said it looks fine. Is it really just the eyelid left to check?!

I’ve been reading up on some links and I’ll try to bring them up with the oncologist—assuming he’s actually willing to listen...

Is there any chance immunotherapy alone could show some positive progress?

If I were you, I’d take that mammogram to a second opinion somewhere else. It happens more often than you'd think—an ultrasound picks up changes that a mammogram misses because the person reading the scan just didn't catch it. Who is interpreting the results matters immensely.
And I have no idea which immunotherapy you're talking about. Not every drug qualifies, and immunotherapy isn't a magic bullet for every single type of cancer.

neoncyclist792 said:Yeah, I noticed his rates aren't exactly cheap. But do Dr. Cepulic's patients actually go to him for their treatments, or does he just refer them off to some hospital in Chicago? How does that work if we aren't living in Chicago?

I've been hearing positive things through the grapevine. You can get your therapy done right there with him.

neoncyclist792 said:wiredbear81, honestly, I feel you.

Does anyone have experience with the Pimezon clinic? I saw they offer full documentation reviews and opinions from an international medical board. How long is the wait for that opinion? Unfortunately, we aren't exactly working with a lot of time on our side here.

I know Dr. Samia is the founder, and he’s basically a legend around these parts.
I haven't dealt with them personally, but knowing him and the crew—the kind of people who put all those fancy academic titles in their email addresses—it feels very high-end. They probably charge a premium for that level of prestige, too.

wiredbear81 said:It breaks my heart to write this, but my mother has passed away. Her lungs finally gave out. It’s been a year since the initial diagnosis, and she really went through the ringer with all that chemo. She didn't have the kind of pain others describe, but listening to her struggle to breathe over those last three days was absolutely devastating.

Please accept my deepest condolences.😢
I wish you strength and peace of mind as you move forward, carrying both her legacy and your own pride in how you handled this.

Kevin Bishop10 said:I had a scintigraphy done back in February, and this brilliant doctor told me I needed radiation on my spine because the pain was going to be unbearable. Well, it hasn't even been a month, and the pain has been absolutely excruciating—I even had to rely on Tramal, and eventually, even that stopped working. According to her, everything visible points to metastases.

I had four different dermatologists examine me all at once, and of course, they claim there’s nothing suspicious on my skin—aside from these totally non-standard metastases (or maybe they just haven't seen anything like them before). They were literally pulling my toes apart, peering in from every conceivable angle, using magnifying tools, sending stuff off for dermatoscopy—absolutely nothing.

The very first clinic they sent me to 3.5 years ago was for hematology. They drew 4-5 vials of blood, and based on those results, the doctor ran some other body scans, if I recall correctly, only to tell me I wasn't their patient.

After cycling through every possible clinic and specialist, I don't trust anyone anymore.

And yeah, that link in the message just takes me to a page featuring a beach in Jordan.

Then it didn't save.
I have to Google it again.
It’s obvious you’re experiencing symptoms that indicate something these people aren't trained to recognize. Which, in turn, implies you need to get out to a major clinic with more specialized expertise as soon as possible.
http://m.annonc.oxfordjournals.org/c..._7/vii303.long
http://www.cancerresearchuk.org/abou...77SxBrreo0T.97
https://www.google.com/search?q=most+...+low+malignant

Kevin Bishop10 said:Three years ago, I had a PET scan done at Medikol, and even then, they couldn't pin down the primary site of the carcinoma. I’m going to try to get in touch with them through a contact in Chicago, and we'll see what happens... The disease moves slowly, but after three and a half years, things are definitely getting worrying.

I did a little digging on occult cancer and stumbled upon this interesting video:


Just from general Googling, I found information supporting the probability of primary sites that Dr. Samia mentioned to you.

By the way, have you had a bone scintigraphy recently?
The reason I ask is because osteosarcoma was mentioned, and you can really only rule that out with a scintigraphy or an X-ray.
I even came across a type of Hodgkin lymphoma that progresses very slowly.
Have you actually been seen by a hematologist yet?

Kevin Bishop10 said:Is there a good diagnostic center in the US? Or maybe somewhere further out? I have a PET CT scan from March of this year. What kind of diagnostic procedure might actually give us some answers? My doctors are at a total loss right now; they don't know what else to try or where to look...

You could try sending the PET results for a second opinion. Honestly, not every radiologist is cut from the same cloth when it comes to competence.
Try reaching out to Rudjer or check out a private clinic like Medikol. Their radiologists are top-tier.
Make sure you upload everything—all the reports and the actual PET CD.
When you're dealing with these kinds of occult tumors that stay hidden for years, if I were in your shoes, I’d head straight to Germany.
From what I can gather as a layman, it looks like we started out dealing with some low-grade carcinoma. If this were something like melanoma, without proper treatment by now, things would be much worse, in my opinion.

Kevin Bishop10 said:Had my mammogram tonight, and everything looks fine! Thank God! Or rather, it’s back to square one again!

I think you need to get out there and get some actual diagnostics done. You don't have any more time to waste.