Look, man, 😁...just take a quick scroll through this forum and look at all the different struggles people are dealing with and the illnesses that are draining them dry... they're dealing with gray hair, and for heaven's sake, you can just dye it any color you want if it bothers you... all of this is perfectly normal 🙂
Dana Martin87 said:It’s at the rib. Dr. Romić operated on him today. They’ve got him in the ICU and say he’s stable—breathing on his own, blood pressure is fine—but I couldn't catch one of the doctors to get the specifics on how the surgery actually went.
That’s good news. They'll probably just direct you toward Herceg or Santek for the next steps.
Maybe we should present it to him as a temporary measure while he gets back on his feet, because Mom can't handle this on her own—she really needs some help.
Amanda Miller69 said:The palliative care team from the local hospital contacted me. They were looking for a number from my father-in-law's primary care doctor; they plan to reach out to him and then let me know if and how they can step in to help.
Does anyone know if a primary care physician can prescribe medical oxygen? My father-in-law is struggling significantly with shortness of breath and just can't catch his wind. Also, does a surgeon or the primary doctor need to sign off on a feeding tube, and where is that actually inserted? I’m assuming it happens at the hospital.
If I'm asking stupid questions, please bear with me—I'm losing my mind with all of this.
Only a pulmonologist can prescribe an oxygen concentrator. To be honest, I don't know if things have changed since I was more active in these discussions, but it isn't exactly straightforward. You have to carefully titrate the oxygen dose because too much can actually be harmful. Try having someone near Jordanovac look into getting a formal recommendation written up for him. You can get the equipment through Medicare.
Fiza, look, a home health aide isn't allowed to administer an infusion on their own—that’s strictly a job for the local clinic staff. But maybe try making a deal with the visiting nurse; see if she’ll let your mom handle it under her own responsibility, provided she walks her through the process first. You should also check in with that hospice volunteer group to see if they have any medical teams operating in the area who can step in if things get hairy. To be honest, if I were in your shoes, I’d start looking for some kind of caregiver or even residential facility as soon as possible. Your mom just isn't going to be able to carry this entire load by herself, and you know that deep down. 😢 I am so incredibly sorry. Life really can be cruel sometimes.
Dana Martin87 said:The doctor just told me: GIST. When I asked where exactly the tumor was located, he wouldn't give me a straight answer. They sent her over to the major medical center in the city. Once they got there, they said: surgery. I haven't seen the discharge papers myself, but my mom tells me they mentioned two massive growths—something like 14 and 11 cm.
You absolutely need to head to the University Hospital. We're talking about a rare diagnosis here, a specific type of sarcoma, and treatment usually involves oncology drugs like Sutent and Glivec. The most critical thing is getting those masses surgically removed as soon as possible. Since GIST affects the gastrointestinal tract, it can spread metastases very quickly from there. Fortunately, there are actually two effective drugs available, which is a relief because for most sarcomas, there aren't any adequate treatment options. At the hospital, you should specifically ask for Dr. Santek or Dr. Herceg. In the US, they are among the top specialists when it comes to handling rare tumors.http://www.cancerresearchuk.org/abou...stromal-tumour
I think the issue is that he’s finished his treatment and now he’s just sitting there doing nothing, but he isn't quite in a position to declare victory yet either. It’s wearing him down. You know that feeling of endless waiting in a trench—not knowing when the enemy is going to open fire again, or if you'll even make it out alive if they send you into no man's land. He needs to find some way to engage with his health—boosting his immune system, getting some physical activity in—anything to give him back a sense of agency and control over the situation.
Like they say, "Mom is a lioness." I remember when you guys were over in Aviano. She truly endured everything. Up until now, the only person I knew who could stomach that much Chemotherapy was the late Vedran, and she’s actually holding up even better than he did. She is exceptional and can serve as an inspiration to others, just as you can through your support.
Hemoglobin levels in oncology patients are best improved through a transfusion.
I’d personally reach out to Pliva to see what’s really going on. My take? The hospital probably blew past their budget cap, and now they're playing dumb, hiding behind some vague, pragmatic excuse to cover their tracks.
Look, whatever you do, do not settle for some "quick swap" solution, especially when there is already a specific prescription on file, because it’s never actually a matter of the medication being unavailable—it’s a matter of them refusing to provide it! It isn't that they can't get their hands on the drug; they just won't! Under the law, they are strictly obligated to ensure she receives her medication if she is currently in therapy and the hospital board has already signed off on it. They need to step up and handle an emergency import if they have to; they are legally required to do so! Stand your ground and remind them that they are bound by both federal law and official regulations!
Benjamin Grant6, regarding the Vinorelbine sold under the brand name NAVELBINE by the pharmaceutical company Pierre Fabre: if I were in her shoes, I’d reach out to them directly. I’d lay out the whole situation and ask them straight up what the holdup is with the US. It’s likely there’s a specific distributor handling their products here in the States, and that’s where the bottleneck is happening, but that doesn't mean the hospital is stuck. They can still arrange an emergency import from overseas. Since the medication has been officially prescribed, they have a responsibility to make sure she gets it.http://www.pierre-fabre.com/en
I know people who have used FedEx to ship tissue samples on slides in little boxes for PhD research without any issues, and they got them right back from a hospital in the States using the exact same route.
It’s doable, but the real headache is that once you perform the puncture, the fluid tends to build back up incredibly fast. That’s why we view it as a last-resort palliative measure; the goal is always to manage the situation with something like Furosemide or Lasix first if at all possible.
It’s impossible to give anyone an exact timeline for how long they’ll live; there are just way too many variables at play. Look, just hold on a second and actually see what we're dealing with here first. It doesn't necessarily mean the whole thing is a total disaster. As for the pain itself, it can be managed quite effectively—that’s literally what anesthesiologists are trained to do. I happen to know a neighbor who was dealing with a massive tumor and didn't experience any pain at all.
Dana Martin87 said:What are your experiences dealing with pancreatic cancer? 😢
If you catch it early by sheer luck, there's a real shot at successful treatment. But let's be honest—most of the time, it’s discovered way too late because this disease doesn't even start acting up until it's already gained significant ground. We’re dealing with a treacherous disease here—one that plays dirty and offers pretty grim outlooks once you hit the stage where metastases have already set in.
Sandra Rodriguez77 said:A family member is dealing with a cancer recurrence that has spread to the lungs—it started as colorectal cancer. They’ve already had surgery to remove a lung metastasis and a lymph node, but there's still one left in the abdomen that they plan to tackle with chemotherapy.
Since this is an older person who is struggling immensely with the psychological toll of all this, and the doctors are being incredibly vague with their explanations, I’m reaching out here to see if anyone can help.
The thing is, she claims this chemotherapy is going to be different from the standard stuff; apparently, she has to stay in the hospital for 48 hours for every single infusion. The doctor told her this and then immediately headed off to the coast because they're still waiting on approval from the relevant institutions, leaving her totally anxious because she has no idea what kind of treatment this actually entails.
Does anyone know what this might be?
It sounds most likely like the FOLFOX protocol. From what I understand, that's a second-line treatment option for colorectal cancers. https://en.m.wikipedia.org/wiki/FOLFOX Everything regarding what happens during those two days should be explained right there.
Look, anyone dealing with brain tumors or metastases that result in neurological deficits—specifically those who have become immobile—should absolutely qualify under the current indications. I’m not an expert here, but quadriplegia or paraplegia can manifest across a wide spectrum of different diseases and medical conditions. In my view, a palliative care patient definitely fits the criteria. It feels to me like the regulations are written with enough ambiguity to allow for some interpretation. Ultimately, everything seems to hinge on how well a local nursing facility can frame the case, whether a specialist is willing to write a strong recommendation in the medical history, and finally, the sheer willpower and ethics of the committee over at Medicare.
Rebecca Johnson said:Thirdly: Angela Wright—patients don't have the right to get an anti-decubitus mattress on insurance covers.
To be honest, I don't recall ever making that claim. I was talking about borrowing or renting them. That said, I did put in the work and looked it up on Google, and it isn't quite how you're framing it. There's a specific Medicare regulation stating that one can obtain one if the patient's condition meets certain clinical indications. You can find those exact same regulations in a PDF directly on the Medicare website.
It’s because he’s accepted that the disease has reached a stage where remission isn't back on the table, so he’s just looking to slow the progression down. Xeloda is doing the heavy lifting there, while Avastin doesn't seem to be doing much of anything anymore. You need to confront him directly. Tell him you aren't interested in just "slowing things down"—you want to fight for surgical options that could actually buy more time and improve his quality of life. Unfortunately, under the Medicare system, they look at the budget first and the patient second. If you want better care and you have the means to pay for it, cut through the noise right now and look into private options or out-of-network specialists. Within the Medicare framework, you shouldn't expect much more than this without constant fighting and endless headaches.
A decent doctor is never going to half-ass their job; I can guarantee you that. It’s true that things aren't working, but how could they when the local family clinic is being run into the ground by seeing fifty different patients a day just to stay afloat? You’ve got a nurse stuck wrestling with jammed printers and broken equipment instead of actually doing the medical work she was trained for. And don't even get me started on the endless waiting lists for something as trivial as a blood pressure monitor—you'll be waiting three months just to get seen. By then, you've basically had to go back twenty times just to keep the appointment. I think I'm heading to the ER. 😉
To sum it up, Peter: people can be absolute pigs. There will always be those who exploit the system knowing full well what they’re doing, and then there are the ones who just don't know better, lack the guts to make a call, or simply decide they belong in the ER. Triage exists, but why it's implemented in some places and ignored in others? That's a question for the folks running the emergency rooms. I still maintain that it’s better to overreact and deal with the fallout later than to face someone yelling, "Where the hell were you?" when things go south... besides, there will always be idiots and conflicts. Anyone who chooses a career working with people just has to accept that reality.