Support for families dealing with cancer and other serious illnesses (Part II)

Rebecca Garcia35 said:Tummy, yeah, that’s most likely ascites. My mom dealt with that—pancreatic cancer. That fluid doesn't just vanish on its own; they have to drain it via paracentesis. Mom was taking Fursemid, but even that didn't really help much. It made breathing incredibly difficult because the fluid was pressing against her lungs and other organs... we had to go in for drainage constantly.

I am so sorry you're going through this—I know how hard it is. Maybe try to talk your dad into going to the hospital, just so he can get some relief.

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

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.

Quick question...

Are oncologists actually obligated to provide care for a patient they’ve essentially turned away? I’m talking about cases where they decide further oncology treatment isn't indicated, yet there’s still a clear need to adjust the current therapy to manage symptoms—something they haven't bothered to do. If a patient is being left in limbo like this, what legal protections can they lean on? Specifically, under any US patient rights laws?

Thanks

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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In the meantime, I managed to have a conversation with an incredibly kind, compassionate, and truly wonderful oncologist (we spoke through a connection—it’s honestly such a shame that you often need a "way in" just to get clear answers). She suggested that, given his specific situation, the primary care physician might be hesitating when prescribing the necessary treatment because they simply don't have all the clinical data from her side. She even mentioned that the doctor could potentially prescribe the Matrifen as well.
Just before receiving this insight, the local clinic (or rather, their substitute staff since everyone is out on vacation) informed me that they aren't authorized to prescribe any medications without a specialist's approval, let alone adjust dosages.

Time is slipping away, and his condition is steadily declining while we're stuck playing this game of telephone with doctors passing around half-truths and incomplete information.

I’ve spent some time trying to dig through the legalities regarding palliative care laws here in the States, but I haven't come up with anything conclusive yet. To be honest, I hadn't even realized until now that this specific issue might not be clearly regulated. That said, I am absolutely going to do a deep dive into the Patient Bill of Rights to see what our options are.

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.

I’m aware of Draskovic and Dr. Loncar. Thank you. I plan to follow up on Monday—I already have the referral ready—because things have truly spiraled out of control despite the anti-edema therapy we’ve been so carefully titrating (I even consulted with the oncologist yesterday just to double-check the titration protocol). It seems he stays stable for a few days on a new dose, only for things to take a turn for the worse again.
I have some Matrifen on hand (though my experiences at the Vinogradska Clinic, and with the Vinogradska area in general, haven't been great), but he’s currently on the lowest possible dose since he hasn't really been in pain or needing it until now. I'll need to head in to get that dosage adjusted.

Truly, thank you all for your answers and for taking the time to help.

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.

So, today I had the Matrifen 25 patch—not a huge amount, but it wasn't really necessary at this stage—plus a Ketoral injection. This morning, I was given an IV of Medrol and Zofran. Last night, I also had the Medrol via IV. I’m currently sitting here debating whether I should try combining Dex with Mannitol tonight, or if I should just stick to Dex alone. I think I’ll just monitor how I'm feeling for a little while longer before making a decision.

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?

No. Up until yesterday, his bathroom habits were actually quite normal—urination and bowel movements were steady. But today, unfortunately, things have taken a turn for the worse. He hasn't been able to eat or drink anything at all; he’s strictly on IV fluids right now. We are doing everything in our power to make him comfortable alongside the nursing staff, but I find myself constantly searching for any small thing I might still be able to do for him. He is incredibly brave through all of this. Sometimes he’ll even crack a joke, asking us, "What did I ever do to you guys?" or checking in to see if we've eaten yet... Honestly, anyone following this thread knows exactly how heavy this feels.

Needs some Fursemid

My dad takes Megostat in the morning—it’s actually helped his appetite, unfortunately—but everything else just isn't working.
I suppose I don't know if this applies to everyone, but it did save us regarding his hunger, though for the pain, we were just given a patch.

I'm curious—does anyone know how long the recovery period usually lasts after the last round of chemo? (I’m just going in for preventative treatment.)

Rebecca Carter9 said:I'm wondering how long the recovery takes after the last round of chemo? (I'm undergoing preventative treatment.)

It’s different for everyone. It really comes down to the specific drug and the dosage you're getting. Since you're doing preventative work, those doses usually mean the nausea and general fatigue might hang around for a week or two. After that, your energy levels should slowly start climbing back up.
That said, using certain immune boosters between cycles can actually make a huge difference.
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Hello. My mother’s cystoscopy revealed a bladder tumor. Her surgery is scheduled for August 8th, and her doctor is confident it is benign. However, she has been experiencing bone pain for a few days now. Is it possible this indicates metastasis, or could there be other causes? I have been reading far too much lately, and it is starting to take its toll on my sanity. 🙂

Rebecca Brooks19 said:Hey there. My mom just had a cystoscopy that showed a bladder tumor. She’s scheduled for surgery on August 8th, and her doctor is pretty confident it's benign. However, she’s been dealing with bone pain for the last few days. Is it possible that this could be metastases, or does the pain not necessarily have to be linked to the tumor? I've been reading way too much lately and it's honestly driving me a little crazy. 🙂

Without a pathology report in hand, nobody can truly guarantee what they're looking at. That said, doctors rarely make a snap judgment based solely on a preliminary estimate unless they are reasonably certain that everything is benign.
Pain can also stem from things like arthritis, which isn't exactly a rare occurrence once you hit a certain age.

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Angela Wright said:Without a pathology report, nobody can guarantee what they're looking at, though doctors rarely rush to a diagnosis based on a mere suspicion unless they're fairly certain it's benign.
Pain could also stem from things like arthritis, which isn't uncommon as people age.

I realize they can't just guess, but I lost my father to cancer. Now, it's the bone pain that really worries me. He usually deals with back pain, but lately, he's complaining that every single bone hurts. Thanks for the quick reply. 🙂

Rebecca Brooks19 said:Look, I get that they can't predict everything—my own father passed away from cancer, so I know how this works. But right now, those bones are really weighing on my mind. His back usually aches, but for the last few days, he’s been complaining that every single bone in his body hurts. Thanks for the quick reply. 🙂

If I were you, I’d stick strictly to what the doctor said, regardless of anything else, unless they explicitly tell you otherwise.

I’m typing this while my 67-year-old dad just sits there—eyes closed, rocking back and forth in his chair. I feel completely hopeless. For about six days now, he hasn't really known where he is; he just cries like a child, wailing and clinging to the furniture. Nights are the absolute worst. He takes 5 mg of Normabell before bed, but clearly, it isn't doing enough. We're looking at the end of a three-year battle with inoperable liver adenocarcinoma—it's spread to his lungs, bones, and brain. When he is actually conscious, speaking is a struggle because his tongue is so swollen. How can I make him more comfortable? Is there even anything I can do?