Posts by ruggedfox11

Scott Davis32, I am so incredibly sorry to hear this... please hang in there.

Angela Wright said:I honestly don't understand—why couldn't they just give you the pump instead of making you deal with all that hassle with the ampules? It seems like such an unnecessary struggle.
It’s not just that he’s putting himself at risk—he’s essentially turning the whole house into a danger zone by overdosing like this.

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He’s dealing with everything—the ampules, the pump, and the Salbumatol—and honestly, the whole situation just feels like a massive headache. And our buddy—who basically thinks he’s some kind of high-level narcotics expert—decided to give us his "expert" advice on what Ventolin actually does. So, naturally, now there's a little whirlwind tearing through the house! haha.
There’s something nasty in the air lately—it feels like everything is coming down at once. Both my cat and I can't stop coughing, and honestly, even the rain feels heavy and oppressive... it’s almost like the weather itself is acting high.

Angela Wright said:Good grief...
It’s honestly overwhelming—my daughter gets so worked up on her Ventolin that I find myself needing to take a Normabale just to stay level when she's using it.

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The nurse was lucky she didn't fall right off her chair when I told her how much Ventolin he's actually taking (he's supposed to have one ampule four times a day, but he's going through four ampules a day). They wouldn't have even realized that immediately after the inhalation, he starts feeling nauseous and dizzy—his heart starts racing, too. We ended up pulling out the medication insert, looking at overdose warnings, and everything; the nurse confirmed our fears. So, for now, we're sticking to Bisolvon.

Rachel Williams, that's wonderful! Please, keep doing exactly what you're doing!!

We finally tracked down the culprit behind that weakness, nausea, dizziness, and racing heart—turns out it was a Ventolin overdose. :-)

Angela Wright said:It isn't really about being colleagues—it’s just how things are structured within subspecialties. It works the same way with prostate cancer and urologists, or lymphomas and leukemias treated by hematologists. In fact, I believe even for melanomas, it's usually dermatologists rather than oncologists who take the lead.
You should try reaching out to Sandra Karabatic over at Jordan. She’s a head nurse right there in the oncology department, and she actually serves as the president of the Lung Cancer Heart Disease Association. She works from 7 to 3, so you could likely catch her at the ward any day. Give Jordan a call and ask for her. Since we're all part of the same community here, I’m certain she’ll help you out if you approach her that way. Just explain what’s troubling you and mention that you’d love for them to take another look at the higher-level results. She is an absolute gem.
Anyway, I’m keeping my fingers crossed for you.

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Thanks
I've actually already been in touch with her. She gave me some guidance on which doctor I ought to be looking for, but honestly, trying to coordinate this via email or phone feels like a mission impossible. At this point, my best bet is just to ask her via email if she can forward the test results to the specialists upstairs.

Good grief... At this rate, I feel like it’s better not to even ask. They’ll probably just turn me down—maybe citing some policy about peer professionalism or whatever excuse they use these days.
My doctor actually lowered his red blood cell target because they were sitting below the standard range—though, to be fair, they've been running a bit low since he started therapy—and honestly, he feels unsteady whenever he tries to stand up. He’s doing alright in the mornings, but by the afternoon, this wave of weakness just hits him. I truly believe the body just needs its own time to process everything and find its balance.

He had a transfusion this morning—I'm curious if that provides any immediate boost?—but he still seems to have such little strength. I actually found myself scolding him just a moment ago; he’s basically only moving between his bed and a chair, when he really ought to be up and walking around more. On a brighter note, they adjusted his diabetes treatment to a combination of two different medications, and it actually seems to be working much better! The thing is, we haven't been able to get a second opinion from the specialists over at Jordan—not by phone or email, no matter how hard we try—so I've been sitting here weighing an idea (though I can't tell if it's a bright one or not). I'm wondering if we should request that he be managed by an oncologist here in St. instead of staying under the care of the pulmonologist. Honestly, I feel like I'm losing my grip on what the smartest move is right now.

First and most importantly—the brain CT shows complete regression (though I’m taking that with a grain of salt, given the diagnosis, obviously)! Second, he's finally back home; the thrombosis has been dealt with, and we just have to wait a few days for them to confirm everything via ultrasound. He’ll also need to start daily Clexane injections next month. Third, his blood work is looking normal—well, except for his hemoglobin, but we'll get some iron into him! I'll admit, he’s being a bit of a grouch—honestly, acting like a woman dealing with PMS because he can't leave the house yet—but... please, let's all have some patience!! My only real worry right now is that room where he was with the gentleman suffering from sepsis... Is it possible for that kind of thing to be airborne?

Honestly, these constant trips to the hospital—moving from department to department, seeing one specialist after another—have started to feel almost comical. It’s become surreal how much of a person's life gets filtered through this endless cycle of tests and appointments. Anyway, I mentioned to his pulmonologist that his leg was swollen. She just told us to head to either the ER for internal medicine or the pulmonary emergency unit. But, because I can’t seem to sit still and let things slide, I insisted we go to the main hospital—I figured since they have everything there, they could check his blood sugar and blood pressure at the same time. Well, wouldn't you know it? The hematologist on call was there, almost certain it was a thrombosis. We waited for the blood work, which confirmed his fears, and he sent him for an ultrasound with a Color Doppler of the leg just to be safe. When the lab results came back... oh my goodness. Leukocyte 2.1 (I wonder how low Neupogen can actually go?), erythrocytes at 2, hemoglobin at 80, and platelets at 45—everything is crashing! Except for the LDH, which jumped to 371 from 355 just a month ago. My heart absolutely sank. The doctor recommended hospitalization, but my husband was adamant: NO, we are going home. Fine. So, the plan is to get an internal medicine referral first thing in the morning to get the radiology done, and then he can start on blood thinners (once I realized that would only happen once those platelets climb back up to 60). And then—get this—the hematologist actually suggested that such a massive drop in blood counts is a "good sign," because it means the tumor is responding. That makes zero sense—maybe for blood cancers, perhaps, but I don't see how it connects here. Good grief! This whole experience has turned into some sort of medical drama series, like a mashup of "Hospital Chronicles" and "Meet the Meds." Ufffff !!

Kate Wells44 said:I’ve explained this before—re-irradiation is absolutely on the table and makes perfect sense if the initial radiation treatment was successful. It isn't a one-size-fits-all decision; an oncology tumor board reviews each patient individually to decide the best path forward.
In the US, we don't usually see this specific issue, but in many healthcare systems, lung cancer patients are often managed by pulmonologists rather than oncologists. This leads to a breakdown in coordination, leaving patients to wander through the system trying to find the right specialists. That is exactly what you are experiencing firsthand.
As an oncologist, I see this systemic friction all the time.

Well, you’ve certainly given me a lot to chew on now—I’ll probably end up having a million follow-up questions... Is it possible to seek a second opinion from an oncologist specifically? Or does it have to be a pulmonologist? And what are the standard protocols for small cell carcinoma here in the States? In her case, the pulmonologist suggested PE as the first line, then Hycamtin, followed by CAV. If the disease progresses more than six months after receiving PE, they go back to it.
Now, I’m hearing that Taxol is typically administered between the Hycamtin and CAV protocols—and apparently, if all those protocols are exhausted and six months have passed since the last platinum-based treatment, they might switch to a different type of platinum. Radiation for the primary tumor wasn't even an option for her from the start. Why would that be? Also—and please excuse my directness—would it be alright if I sent over his lab results and CT scans? :-)

Kate Wells44 said:I’ve explained this before—re-irradiation is definitely an option, and it makes perfect sense if the initial radiation treatment achieved the desired results. Whether it's pursued depends entirely on the tumor board's decision for each specific patient.
The real issue here in the States is that at almost every hospital, lung cancer patients are managed by pulmonologists rather than oncologists—which means coordination with the oncology teams is often messy, leaving patients to waste precious time wandering through a fragmented system. That’s exactly what you’ve been experiencing firsthand.
As an oncologist, I see this systemic breakdown from the inside.

I didn't catch that immediately, which is why I had to ask :-)
Thanks for clarifying!
And yes, you hit the nail on the head—that disconnect is such a massive, frustrating hurdle. Unfortunately, it's even worse when you take the time to gather insights from various doctors—including an oncologist I know personally (though they don't specialize in lungs...)—and look into other people's experiences, only to walk into a pulmonologist's office armed with all that knowledge, only to have them shut you down with a blunt "we can't do that" or "it isn't an option."

Kate Wells44 said:Primary brain tumors are typically treated with up to 60 Gy—usually delivered in 2 Gy increments daily. This represents the maximum tolerance dose the entire brain can handle during a single course of radiation. If we increase the daily dosage, the overall duration of the treatment must be shortened; while this results in a lower total cumulative dose, the radiobiological impact remains effectively the same.
Brain metastases are most commonly treated using a regimen of either 20 Gy over 4 or 5 fractions, or 30 Gy over 10 fractions—which ends up being roughly equivalent to about 50 Gy delivered over 25 fractions. These abbreviated radiation schedules are just as effective as the longer, more drawn-out versions (the 2 Gy/day approach). For patients dealing with brain metastases, there really isn't any clinical advantage to stretching the treatment out over five weeks when you can achieve that same therapeutic effect in just four or five days.

Thank you so much for clarifying everything!
I was actually bracing myself for a follow-up explanation regarding what all those numbers specifically imply... :-)
Does this mean that if new metastases actually show up, he truly won't have any more radiation options left?
And I have to ask—is Ethan Roberts23 actually a medical doctor, or is it just a username? I really need to know. :-)

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Kate Wells44 said:The medication causes significant hematologic toxicity. It’s vital to monitor CBC levels closely—in your husband's case, I'd suggest checking them every day or every other day at most.
Regarding the radiation dosage, 60 Gy represents the maximum dose for the brain when we stick to a daily regimen of 2 Gy. However, when dealing with brain metastases, we often administer higher daily doses—around 3 to 5 Gy—delivered in fewer fractions (days). This approach actually makes the therapy much easier on the patient, and since we are talking about an "equivalent dose," the overall clinical efficacy remains the same.
It is possible to re-irradiate the brain if the initial treatment achieved the desired results, though it is certainly preferable to allow a significant amount of time to pass between treatments.

I am already aware that more frequent blood work is necessary; I’ve already coordinated that with his oncologist.
Could you please elaborate a bit more on this concept of the "equivalent dose"? He has received a total of 20 Gy over the course of 5 days—which means he's getting 4 Gy per day. Are you suggesting that this is equivalent to the maximum dose?

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Angela Wright said:Steroids definitely drive up blood sugar—you'll notice it can spike quite suddenly. You really have to stay on top of any diabetes management because the medication levels can get thrown completely out of whack. It would be ideal if you had a continuous monitor so you could track everything before and after meals.
As for the leukocyte count, it can bounce back relatively easily with Neupogen or Neulasta (which helps with those nagging bone pains). The much bigger concern is the platelets—those can often only be bumped up through a transfusion, and some people actually have reactions where they go into shock. Doctors usually only step in with that once the numbers have bottomed out.
If you're looking to boost leukocytes, sometimes just getting some physical activity helps—it can send those counts up like a rocket.
Thumbs up for sharing that perspective!

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We actually do have monitors; we check fasting in the morning and then again two hours after meals. So, yeah—hopefully, we can manage to stabilize these sugar swings, especially since there's the morning and evening diabetes medication mixed with the Decortin in the afternoon.

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We ended up spending two nights in the ER at the ENT department because of some severe nosebleeds. They had to use nasal packing, but—and this is a massive "but"—his white blood cell count dropped to 1.9, his platelets plummeted to 55, and his blood sugar spiked to 18! That's insane. If Topotecan can wreck a blood count that badly, I don't even want to think about what else is out there...
Anyway, he’s stable for now. I’m reaching out to his pulmonologist to let her know what happened—to make sure she runs a full blood panel again in a few days and understands that the sugar spike is likely due to the steroids. Though, honestly, which steroids? It’s not like this is his first time taking them; his levels have never been this high before! And the thing is, she doesn't seem to have a clue about his actual dosage or exactly what he's being prescribed. It’s just infuriating. I have dozens of students passing through my classroom every year, and while I might forget a name here or there, I know *exactly* which concept a specific student is struggling with. When you hold someone's life in your hands, you really shouldn't be guessing what medication you've handed them.
But, whatever, we'll manage. I called my sister, and she said the levels are too high regardless of the corticosteroids, so she went over to see his primary care physician to get him some medication to bring the sugar down. He's actually feeling a bit better today.
And another thing—why is he being sent for a follow-up brain CT when he can't undergo any more radiation regardless of what the scan shows? It makes zero sense. Why would an oncologist say the maximum dose is 60, he's only receiving 20, yet you're telling me there's nothing left to give?! It's maddening.
I've decided I'm going to seek a second opinion in Chicago, because it feels like she's just given up on him. It's a total disappointment. People are right when they say certain doctors are just driven by pure ego.

Robin Diaz4 said:I stayed quiet about quite a few things myself—mostly because I didn't want to cause friction or hold a grudge against anyone, which might have ended up interfering with my dad getting the care he actually needed. We were lucky enough to get him the right treatment almost immediately after the diagnosis, but getting to that point took over six months of waiting. He was just so patient through it all, never truly believing that anything serious was happening. I won't sit here and play "what if" scenarios—like wondering if catching the illness six months earlier would have changed things—because honestly, no amount of imagining doesn't bring him back. But the reality remains: the system is broken.

The only thing that weighs on me now—the one real regret—is that I didn't push harder and demand answers sooner while he was stuck in that hematology ward for twenty days just waiting for a diagnosis. But... I suppose there's no use in dwelling on it now. There's no turning back.

stormyfalcon68 said:The night the doctor discharged my father from the ER without providing him any actual relief, I ended up writing a whole post about the entire ordeal on my blog.
Honestly, forget the blog—it wasn't even really about writing; it was just my way of venting all the stress and everything we were going through at the time.
By the next morning, the entire hospital knew every single detail—about the doctor, about my father, about my parents—it was being whispered in every hallway, among the nurses, and throughout the staff.
I ended up deleting the post, which felt a bit cowardly, I suppose, because I didn't want anyone looking at us differently. In the situation we found ourselves in, we didn't need more drama or to be fighting over trivialities.
If it had been about me, I wouldn't have cared one bit!
But for the sake of keeping the peace, I just kept my head down and stayed quiet.
And who knows how many other people stay silent like that, enduring their own personal horrors just because they’re afraid of being judged, or because they're too exhausted to fight battles on a thousand different fronts for a thousand different reasons.

That's okay. We aren't all built the same... But if we allow them to act like they're "gods," then we've definitely failed.

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Robin Diaz4 said:This really gets to the heart of the American mindset—it isn't just about healthcare, either; it’s woven into my profession and pretty much every other sector you look at. Everyone is incredibly vocal when things are going wrong—lots of "we should do this" and "that ought to happen"—but the moment actual movement is required, people freeze because they don't want to be the ones to step out of line. I've found myself in several situations within my own field where a total "revolution" was necessary, where we needed to take our grievances straight to the Department of Health and Human Services. I even drafted the formal letters myself; my colleagues were all encouraging me, giving me pats on the back and telling me I was doing the right thing, but when it came time to actually sign those documents... I was left standing there completely alone. Because, let's face it, nothing ever changes when it's just one person complaining. If hundreds or thousands of us stood up together, it would be a different story entirely. There are a handful of doctors out there who are widely known to be nothing more than butchers rather than medical professionals—people who absolutely should be fired and stripped of their licenses—yet if anyone asks the federal government, nobody has ever officially filed a complaint against them. It's not because there's some grand conspiracy at play; it's simply because, in reality, no one ever bothers to speak up!

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I was literally just thinking the exact same thing! :-)

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stormyfalcon68 said:ruggedfox11, please don't let this get you down.
We grew up in the same area, and we’ve walked through very similar struggles. I remember one night—I can still feel the pit in my stomach just thinking about it—when my father was struggling to breathe at the ER. We were met by a doctor who basically told us there was nothing she could do regarding his diagnosis and sent him straight home. No oxygen, no support, nothing to make it easier for him.
Honestly, I don't even know how we managed to stay composed enough to get through that night; I still feel a bit lightheaded just recalling it.
In that moment, I wished for her—I truly did—to experience that exact same treatment and that exact same attitude when it was someone she loved fighting for their life.
For every brilliant physician out there, there are others who lack even a shred of emotion or empathy—people who view patients as mere entries in a spreadsheet. Don't let them get under your skin.
Stay vocal. Keep demanding exactly what you are entitled to receive, regardless of whether people look at you sideways for doing so.
It is your life on the line here, and no one has the right to make you feel guilty. If it were someone close to them sitting in your chair, they would be singing a very different tune.

It's the truth... if it were anyone else, she'd be acting much differently. Everything about this just infuriates me. I won't let her provoke me—at least, I won't let her see it—but the people... It's hard to wrap my head around how some people can be so dense and stuck in the dark ages, so easily swayed by anyone without using a lick of common sense. They can't seem to snap out of it, think for themselves, or simply say "enough." They treat doctors and politicians like deities, and they don't care that someone is hitting their head against a wall in the process. It’s always easier to walk away than to actually step up, fix something, or speak out. But no. And then, when an individual stands up for themselves because they know their rights, that person is suddenly labeled as the "fool." Maybe I am. But look—I'm a math professor. I charge for tutoring, and I have students who practically need me to draw 2+2=4 for them, yet I have never once acted superior or condescendingly insisted, "Well, you should obviously know this," especially when we're talking about grades, not a human life...
I realize I’ve drifted a bit from the main point, but everything about this situation just set me off. Honestly, I was so worked up that I ended up dyeing my hair from blonde to pink, gave my nose a little tweak, put both kids to bed, and grabbed a cold beer just to try and clear my head.

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I would love to write more about this, but honestly, I’m just at a loss for words—I don't even know where to start. The medication finally arrived this morning, along with the approval letter from the insurance provider (which was dated July 27th... apparently they approved it immediately after the medical board meeting). He isn't doing well. He’s coughing up this thick, yellow-green mucus with streaks of blood, though he does seem to get some relief in his rib pain when he coughs. As for the doctor... she might be a decent professional on paper, but I just can't bring myself to trust her. It feels even worse now because it seems like she’s siding with her colleagues rather than standing by the patient. She has this defensive mechanism where she becomes incredibly harsh and even insulting if you ask too many questions—this is actually the second time she's spoken to me that way. She basically told me not to get my hopes up about the Hycamtin, suggested I shouldn't bother alerting the Department of Health, and implied I should just accept the fact that there's nothing left to be done—that I need to be the "realistic" one with my feet on the ground instead of living in a fantasy. It completely crushed me. Part of me just wants to tell him not to suffer through this, to just end the misery, because—God help us—is this really how a doctor "comforts" a patient and their family? I can't wrap my head around it. I understand that to them, we are all just numbers on a chart, but surely there is a minimum dose of empathy required? Just for one moment, show that you care about the damn life you swore an oath to protect—to value human dignity, at the very least. Instead, she makes me feel guilty for doing everything in my power. To have a DOCTOR, a PROFESSOR, a hospital ADMINISTRATOR, tell me that my husband's condition isn't urgent... to have another doctor, a member of the pharmaceutical review board, literally count my husband's blood cells and make comments about his background... It is a total catastrophe. I told myself right then: once he passes, the first thing I'm doing is requesting an autopsy, and then I am going to hold every single one of them accountable. I won't let them off easy.

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