4549 posts shown.
ruggedfox11 said:The CT shows regression, but he’s still totally out of it.
Radiation trauma can definitely leave lasting marks on the brain.
That said, I suspect this is more about electrolyte depletion. He needs to focus on recuperating.
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ruggedfox11 said:My darling is begging to be sent home today. They actually let him go. Yesterday morning, they pulled his IVs—the potassium, the glucose, everything. We have a CT scan scheduled for tomorrow. His blood work looks okay, aside from his red blood cell count, which is recovering at a snail's pace. What’s really eating at me is that he hasn't touched a single drop of water between yesterday morning and this morning. Today, I can barely force him to drink half a liter. He isn't losing weight rapidly, but he’s confused—like, profoundly confused. He’ll say one thing and clearly mean another; his sentences just drift, disconnected from whatever he’s actually doing. He can still write normally, though. If you want the clinical breakdown, it's low potassium, the underlying illness, dehydration, anemia, and pneumonia. But honestly, considering how bad he was on Friday, even after they cleared the IV fluids, I think he’s just severely dehydrated. Watching this... living through this... it is incredibly hard.
Dehydration completely wreaks havoc on your brain chemistry.
Get him some bacon to help bump those white blood cell counts up, and make sure he's sipping on Donat all day. I'm not sure if your doctors mentioned it, but he should probably be sipping on some Pedialyte throughout the day too.
On another note—November 13th will mark ten years since my mom passed away.
Ever since I found out about her diagnosis, every single day has felt exactly the same. It’s this heavy, constant void that just keeps growing—especially because she never got to meet her grandkids. They grew up without ever knowing her. Sometimes I look at my dad and I can't help but think about how incredible it would be if Mom were still here. Honestly, if things had gone differently, I probably wouldn't even be seeing my kids right now.
Life is just one damn thing after another.
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Scott Davis32, please accept my deepest, most sincere condolences.
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ruggedfox11 said:The doctor would've probably fallen right off her chair if she heard how much Ventolin he’s actually using (he needs one dose four times a day, but he’s pulling four doses a day). They wouldn't have even realized that immediately after the inhalation, he feels nauseous and dizzy, his heart starts racing—until we actually pull out the medication guide, see "overdose," and the doctor confirms that's exactly what happened. So, for now, we're sticking with Prednisone.
Rachel Williams, that's awesome! Keep doing exactly that!!
Why couldn't they just give him a standard inhaler instead of making everyone deal with these damn ampules?
He isn't just overdosing himself; he's poisoning the whole house.
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ruggedfox11 said:We finally figured out why she's so weak, nauseous, dizzy, and has a racing heart—she overdosed on her Ventolin. :-)
Good grief
My daughter goes absolutely nuts on Ventolin; I practically have to pop a Xanax just to deal with her when she's on it.
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ruggedfox11 said:Good grief... At this rate, I might as well stop asking altogether. They’ll probably just pass on it because of some "professional courtesy" or whatever they call it.
My doctor actually raised his red blood cell count because they were running low—though honestly, they’ve been under the limit since he started therapy—and he gets dizzy whenever he stands up. He feels fine in the morning, but by the afternoon, the weakness really starts to hit him. I think the body just needs time to do its thing.
It isn't about "courtesy"; it's simply how the medical hierarchy works in terms of subspecialties. It's the same way urologists handle prostate issues, or how hematologists manage lymphomas and leukemias. In fact, I'd bet dermatologists handle melanomas rather than oncologists.
Try getting in touch with Sandra Karabatic over at the Jordan clinic. She’s a head nurse on that oncology ward and also heads up the Heart Disease advocacy group. She works from 7 to 3, so you could catch her at the unit any day. Call the Jordan facility and ask for her. Since she's a local legend, she’ll definitely help you out if you play that card. Just explain what's going on and mention you'd love for them to take a look at the higher-level lab results. She's a lifesaver.
Fingers crossed for you.
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ruggedfox11 said:First things first—the brain CT shows total regression (though I’m taking that with a grain of salt, given the diagnosis :-)). Second, he’s back home. The thrombosis is handled; we just have to wait a few days for ultrasound confirmation, and then he’ll be on Clexane injections for a month. Third, his bloodwork is looking normal, aside from the hemoglobin, but we’ll get some iron in him! Sure, he’s being as cranky as a woman dealing with PMS because he can't get out of bed, but... please, have patience!! I am genuinely worried about what was going on in that room with the guy who had sepsis. Can that kind of thing spread through the air?
Look, those lung metastases on the brain are incredibly radiosensitive, so it’s really no surprise they receded. You guys acted fast.
As for the sepsis, it all depends on the source. Was it a bacterial infection, or a viral one spread through droplets? Or did he pick up a UTI that allowed bacteria to migrate into the bloodstream?
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swiftpilot29 said:Hey everyone. Dealing with some suspicious MS in the brain. So far, we've had surgical removal of the primary melanoma, both axillae, and then last year, the MS in the brain. Current protocol: Zytron plus Temozolomide—6-day cycle. How is this typically tolerated? Also, is it possible to bring in supplements to help maintain blood counts and boost the immune system?
My mom handled Temodal pretty well, though she had a primary tumor and her protocol didn't involve Zytron back then.
I'd suggest using supplements both before and after the cycle.
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Steroids spike your blood sugar—you know that, it can just shoot up out of nowhere. You really have to stay on top of your diabetes management because those meds can absolutely wreck your levels. Honestly, the best move would be to get a continuous glucose monitor so you can track everything before and after you eat.
As for the white blood cell count, it’s easy enough to bump that up with something like Neupogen or Neulasta (which helps take the edge off those bone aches). The real headache is the platelets; those usually require a transfusion, and some people have nasty reactions where their blood pressure just bottoms out. Doctors only step in with that once things have completely tanked.
If you want to boost those leukocytes, go hit the gym and work on your core. It sends those counts up like a rocket.
Thumbs up for getting a second opinion!
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I can settle everything with my doctor without any issues. In my opinion, it all just comes down to the level of trust between the physician and the patient.
analogbison0 said:The discharge papers finally arrived... and naturally, they’re a total disaster.
Abdominal tumors during pregnancy.
Post-radiation therapy for squamous cell carcinoma of the cervix, specifically regarding the treatment plan for patient AA at 24th St.
Post-irradiation therapy, specifically regarding the PPT VAIN III protocol following stage XIII treatments.
The situation at the local clinic is becoming an absolute mess. It’s like watching a slow-motion train wreck where nobody wants to grab the brake. Everyone is just standing around pointing fingers while things fall apart. Honestly, if we don't get some actual accountability soon, there won't be anything left to fix.
Suspected metastatic hepatitis.
The ultrasound results came back: external female genitalia look normal, but the vagina is fused from the distal third, showing epithelialization. The entire abdomen is distended and firm to the touch, though painless, extending all the way up to the xiphoid process.
Ultrasound/TV results: Due to the tenderness and a narrow pelvic floor, there’s a significant amount of cystic tissue showing up on the scan.
Abdominal ultrasound results: the entire abdominal cavity is packed with cystic formations filled with hypoechoic content, featuring solid septations measuring between 4 and 5 mm thick.
Radiology report: MSCT scan of the abdomen and pelvis, including bowel marking via gastrografin and following IV contrast administration.
We’ve got a solid-cystic expansive mass sitting in the abdomen and lower pelvis, positioned ventrally. It measures roughly 22.8 x 14.5 x 24 cm. This thing is big enough that it’s actively displacing the surrounding abdominal organs. It reaches up toward the kidneys and extends down toward the uterus and bladder. The solid portion shows contrast enhancement, which brings us to the main question: could we be looking at an ovarian tumor?
The liver looks normal in size with smooth contours. However, there are two non-sharp, well-defined lesions in segment 7, measuring 4 mm and 6 mm. They look isodense to the rest of the tissue on the initial scan, but after the contrast dye is administered, they show weaker enhancement compared to the surrounding parenchyma. Differential diagnosis includes hemangiomas versus metastases.
The bladder shows normal wall thickness, with nothing unusual visible inside the lumen.
The spleen appears normal in size with a completely uniform structure.
The pancreas looks normal in size, and there are no signs of any focal lesions.
The right adrenal gland is enlarged and shows up as hypodense on the scan, measuring about 31x24 mm. It picks up the contrast, which makes it look like a differential diagnosis of an adenoma.
There’s a 9mm subcapsular calcification sitting in the middle third of the left kidney. It looks like it could be a kidney stone, but we still need to rule out other possibilities.
The radiologist's report;
Furniture asymmetry.
There’s a slight decrease in lung parenchyma opacity in the lower right area. It could be caused by the overlapping soft tissue from the breast, but we can't rule out an early-stage infiltration just yet.
That’s the bottom line right there. That CA 125 reading of 101.4 says it all.
Honestly, from what I can gather, they don't even have a clue what they're actually dealing with until they crack it open and take a look. 🙂
Honestly? I think that "little guy" is probably onto something. My CA 125 levels were three times higher than your mom's because of my endometriosis. Your mom seems to have a large tumor, but those things are almost always benign.
I’d be pushing for them to run a full hormonal panel, specifically checking her estradiol levels. If those numbers come back high, there’s really no debate—it’s almost certainly an issue with the adrenal glands. It’s highly likely that what started out as a simple ovarian cyst was essentially "fed" by those excess estrogens, allowing it to grow into a full-blown tumor.
Look, no matter how you slice it, they're going to need surgery, and that’s going to have to happen in Chicago. The Petrov Department is right under the Rebro wing, and they've got specialized teams specifically trained for situations exactly like this.
I honestly think it’s highly probable that we're looking at something completely benign here. It could easily just be a hemangioma on the liver, and those shadows on the lungs? That’s likely nothing more than some old scarring from a past infection.
Don't ever take a suspected diagnosis to heart. The reason nobody says anything is simply because they don't have any actual evidence yet—it’s all just part of that deep-dive, PhD-level analysis they perform during the procedure.
ruggedfox11 said:Truth... If things were any different, she’d be singing. Honestly, this whole thing just infuriates me. She isn't going to provoke me—at least I won't let her see it—but these people? It blows my mind how many folks are stuck in some sort of intellectual dark age, just drifting along without a single brain cell, unable to snap out of it, think for themselves, and just say "enough." They treat doctors and politicians like they're gods, and they couldn't care less if they're banging their heads against a brick wall. It’s always easier to walk away than to actually step up, fix something, or use your head. But no. And then, the moment one person stands up for themselves because they actually know their rights, suddenly *that* person is the idiot. Maybe I am. But look, I’m a math professor. I run tutoring sessions for students who literally need me to draw 2+2=4 for them, but I have never once acted superior or condescending by snapping, "Well, you should know this," especially when we're talking about grades, not someone's actual life...
I drifted off-topic a bit, but the whole situation got under my skin so much that, honestly, I dyed my hair from blonde to pink, gave myself a massive nose ring, tucked the two kids into bed, and cracked open a cold beer just to shut my brain off for a second.
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People generally only show up for the fight when it affects them personally. From everything I've seen, it works like this:
Someone has an issue because they can't get a medication they are legally entitled to through Medicare. They stir up a massive scene through an advocacy group to apply pressure, they go to the news, they finally get the meds—one way or another—and then they vanish from the conversation entirely. They're done. Meanwhile, you have those two or three people in the advocacy group doing all the heavy lifting, while everyone else blames them—from disgruntled patients claiming "they aren't trying hard enough" to pissed-off politicians saying "they're just being difficult."
Everyone is there, heart and soul, when they need something. Everyone else? They're just there in theory. It's always someone else's problem until it becomes yours. There are so many of those types—people who are dying or desperately need medicine, yet they beg you not to mention their names because they don't want to offend anyone or cause trouble for their doctor... ugh, just thinking about it makes me sick. 😣
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I’ve been reading through these threads since 2005, and let me tell you, I’ve seen endless versions of this exact same story. I actually went as far as founding an advocacy group once, but it eventually collapsed because politics and Big Pharma exploited the weakest links in the chain, stripping us of our credibility until we had to shut down.
Listen, people, you have no idea how deep these games go or what levels they operate on—stretching from bottom-tier charlatans to actual doctors, and from the pharmaceutical giants to the political machine. The level of sabotage they're willing to pull is staggering, and it's all interconnected. In the end, the patient is always the one left carrying the weight.
The one thing I constantly advise everyone is to be assertive. If you have to fight tooth and nail through every legal avenue available to get what you need, then do it.
I’m glad to see that calling out the Department of Health actually yielded some results—for now, at least, until the next crisis hits.
The real issue lies in those hospital monthly budget caps that they aren't supposed to exceed. Milton's infamous mandate essentially tells those limits to go jump in a lake (sorry for the language, but it’s the only way to put it, and it’s damn accurate). Basically, a huge range of expensive medications—which, by the way, they still haven't even clearly defined—are essential for treating various cancer diagnoses, yet they aren't on the standard list of drugs covered by Medicare. Instead, they’ve shoved the decision of whether a person is "entitled" to them onto a committee. Most of the time, the answer should be yes, otherwise why would a doctor even bother requesting the funding? These costs are pulled directly from the hospital's operating budget alongside things like syringes, needles, and even toilet paper. It’s not uncommon for just ONE patient's specific medication to drain the entire oncology department's budget for months.
And yeah, it gets worse. Because doctors are terrified of repercussions, they either violate their own Hippocratic Oath or they strike a "handshake deal" with the patient. They’ll write a private prescription, order the meds themselves, and then treat the patient in a "gray zone." Here’s the reality: hospital treatment isn't supposed to be administered using drugs brought in from the outside—that’s a standard rule and practice everywhere in the world. The hospital pharmacy is supposed to handle all procurement. Before this ridiculous mandate was implemented, hospitals used to receive direct funding to buy these drugs. That system was flawed, sure, but at least you could receive legal treatment. Now, we’ve reached a point where doctors are essentially treating us illegally within the hospital using drugs prescribed via private scripts.
The situation is critical, and it’s only going to get uglier. As a nation, we need a massive reality check. The days of worrying about saving up or taking out loans for a new car or a house are long gone. Today, you’re forced to save for scenarios where you might have to cough up millions of dollars just to stay alive because certain medications are a lifelong necessity. Healthcare has become a luxury reserved for the rich and powerful. The only small comfort I find is the fact that there are zero guarantees in this life; against biology, every effort is just a gamble, even for the wealthiest and most influential people on earth.
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ruggedfox11 said:I had a total meltdown today and started a massive uproar at the Department of Health over these retarded waiting lists and "monthly quotas." Hopefully, they'll actually do something about it...
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Unfortunately, they won't. It’s like tilting at windmills—a fight that nearly cost me my first child. You can't fix this with a single outburst; the entire system needs a complete overhaul from the ground up. What we actually need are honest, sane, and articulate people in every level of government, from the federal agencies down to local administration. Being a relatively small nation, we're far too vulnerable to the petty interests of a few big shots, and those people can make life absolutely miserable for everyone else.
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Ashley Robinson3 said:What you're saying isn't true. I know the details of this story because it was picked up by the news. This guy was actually shipping his own samples over to a reference center in Austria, where they identified a subtype of stomach cancer so incredibly rare that they told him he had a better shot at hitting a triple jackpot than catching that specific diagnosis. He tried Sutent, but it just triggered allergic reactions. Once he moved his care to the Mayo Clinic, his doctor recommended the exact medication he’s been fundraising for—and the doctor himself is actually spearheading the drive to see if anyone has leftover supply. Long story short, he's raised enough to cover three months of this experimental therapy to see if it actually works. It's his one shot. So, you've got the whole situation completely wrong.
Yeah, he sent requests to the hospitals and Medicare too, but of course, they denied funding.
I didn't realize about the Sutent issue, but there's a massive difference between an oral recommendation and having a formal prescription in black and white.
The reality is, he couldn't get a dime from Medicare because he needs an OFFICIAL recommendation from a physician within the Medicare network. Medicare doesn't have a direct say in this; if his doctor had suggested what he claims, the request would have gone through a hospital board to approve funds from the hospital budget for Nexavar treatment. That's how it works for any drug that isn't on the standard Medicare formulary but is FDA-approved for the indication here in the States (that's been the protocol since the old administration and Milinovisev's era, and nothing has changed). Sure, they might still deny him, but if that happened, he'd have every right to take his case to the media. Instead, he's treating himself with something that isn't legally permitted in a hospital setting and isn't a safe way to manage an illness.
Given my experience working with patient advocacy groups for cancer survivors and having dealt with similar situations, I know exactly how these wheels turn.
The road to hell is paved with good intentions.
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Rachel Williams said:We just got the biopsy results back for Mom's lumps on her back and head. We had already braced ourselves for them to be lung metastases, but they aren't—they’re actually breast cancer metastases... where does this end? Even since last year, her breast cancer markers have been elevated, even though both Mom and her ultrasounds seemed totally fine... now we're just stuck waiting for the pulmonologist from the Mayo Clinic to get back to us so she can figure out the next steps, all while we wait on the chest and abdominal CT scans to come in and just completely crush our spirits...
Good grief... life really knows how to throw a curveball when you least expect it. I really hope they can manage to get things under control.
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ruggedfox11 said:So, the pulmonologist is saying it really is cancer tissue, but it's necrotic—dead tissue—most likely from the right bronchus since that was completely blocked at the start.
Clinically speaking, there's nothing to worry about because all three are being coordinated, so we’re just waiting on the board's approval for Hycamtin today or tomorrow.
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In that case, shouldn't that be considered good news? If those masses are dead, they aren't an issue anymore. Maybe that previous finding wasn't actually progression after all?
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Rachel Williams said:He actually went out and announced it himself—that all the money has been pocketed—and he’s begging people to stop donating. 😉
The whole thing turned into a bizarre mess in the end. From what I can gather, the guy got a verbal recommendation for a medication, and his doctor told him they’d write up a formal prescription once they returned from vacation. As far as I can tell, he decided to take matters into his own hands and started self-administering Nexavar. Seriously, Jesus, do you have any idea what you're doing? 😨 He's basically cornered himself by making this public appeal, and it’s completely unclear how he knows his exact dosage without medical supervision, or if the stuff he received through donations was even stored correctly or follows the right protocol for his specific needs. He’s playing Russian roulette with a very high probability of getting shot. Besides, handing off leftover chemotherapy drugs meant for one patient to someone else is illegal, just like dispensing medication without a prescription.
If his doctor actually writes that prescription, he’d automatically be eligible for reimbursement from the hospital budget, since that’s how drugs not covered by Medicare get funded.
In my humble opinion, you did him a massive disservice.
And I don't understand why he isn't on Sutent, which is on the Medicare list for GIST and is just as smart an option with great efficacy.
The healthcare system, especially regarding oncology, is completely broken, and that's been the case for decades. It drives people to do desperate things.
Poor souls. 😔
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ruggedfox11 said:Unfortunately, I don't have any formalin on hand :-(
She could try putting it in the freezer or the fridge, though I'm not sure if that'll actually do anything.
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Try putting it in a sterile specimen cup, then pop that in a baggie and stick it in the fridge. It sounds pretty grim, I know, but if that mass they saw was real, maybe it just broke apart and passed. Based on the dimensions in the report, the size seems to match up.
You guys should also get a chest X-ray so you can compare the results.
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ruggedfox11 said:Come on, you bet! I was totally blindsided by the initial news. When I sat there holding those pulmonologist's results, I just completely fell apart and started sobbing. That day, her saying, "Unfortunately, even we doctors get sick seeing a diagnosis like this," was the only thing that comforted me—because I felt sick myself, stupid and useless because I just didn't understand any of it.
Anyway, I have a few questions, starting with his findings.
http://uploads.tapatalk-cdn.com/201...abefa49fc5.jpg
Is the tumor climbing up or around the heart? And what exactly are lymphangitis? Google claims enlarged lymph nodes can be caused by strep (his last blood work from Monday showed high neutrophils and monocytes), but the pulmonologist basically said the cancer is metastasizing.
Yesterday, he coughed up a chunk of something, and we have no clue what it was. Whatever it was, it looked like fish roe—just white, fatty, and about the size of a ping pong ball. After half a day, it just looked like a little pile of fatty tissue (I've watched Dr. House way too many times, so now I want to analyze everything if it needs testing; God help us with these illnesses)..
http://uploads.tapatalk-cdn.com/201...0e88818f84.jpg
Oh right, they released three clinical trials for microcells in Chicago involving immunotherapy, so we’re going to send over all the lab results and scans and hope he gets in.
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I'm not sure about the specific term, but what he coughed up could very well be a piece of the tumor. It looks spongy, which would fit with lung tissue. If only I had some formalin to preserve it so we could take it in for an exam.
Fingers crossed for the study.
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