Hey everyone, So, my dad came in for a checkup the other day. He’s been feeling pretty good for a few weeks now—really, he's doing great. He's driving again, going grocery shopping, just living life. The only weird thing is he can't go swimming in the ocean (he says he feels this pressure in his lungs whenever he gets near the coast) and he can't walk for very long without getting winded. When he showed up for the appointment, all his tests looked fine, meaning nothing was spreading further. He was just about to head home when suddenly, that evening, he started coughing violently. He said it felt like he needed to cough something up but couldn't, like there was this constant tickle in his throat. He just kept coughing and coughing until he started wheezing and gasping; he seriously couldn't catch his breath. It didn't last forever, but it felt like hours. Since then, he's been feeling terrible, and it happened twice in two days. I get that he's dealing with this disease, but I'd really appreciate it if someone could explain why this happens. Is this kind of thing normal with lung cancer, and is there anything we can actually do? They've repeated all his tests twice now and everything comes back clear. The doctors just say that's just how the disease works. On top of that, his shoulder has been hurting for weeks, and it's getting worse. They did an imaging scan on the shoulder, but they claim nothing is wrong. He’s scheduled for a contrast scan next week. Is there any connection between these two things? I'm really worried about those episodes where he loses his breath, especially because once it happens, it's so hard for him to breathe normally again.
wanderingcobra76 said:It won't trigger metastases, but patients dealing with advanced metastatic pain are at a higher risk for developing blood clots in their veins. Those clots can turn into deep vein thrombosis, which usually shows up as leg swelling and pain. The scary part is that massage could potentially dislodge those tiny clots, sending them straight into the lungs. That's how you end up with a pulmonary embolism, which can be fatal.
My dad has lung cancer with metastases in his neck lymph nodes—which have been acting up on and off for a while now—and in his chest. He's also dealt with chronic back pain for years, so my mom massages him almost every day. I guess I'm wondering if massaging him is actually a bad idea given everything else going on.
wanderingcobra76 said:A nodule or node is just a lump—basically a round shadow on an RTG scan. It could mean anything, really. Maybe it's just some scar tissue, or maybe a blood vessel caught at an angle, or potentially something more serious. The whole thing depends on why the test was ordered and the patient's specific history.
Saying the heart is compensated just means there aren't signs of failure; basically, it looks okay.
My dad has small cell. At the end of the report, the conclusion says everything looks normal, meaning there's no sign of disease progression.
wiredotter75, I'm so sorry to hear about your results. But you're a fighter, so hang in there and just keep pushing.
Can someone explain this sentence to me: In the upper left lobe of the lung, there is a non-calcified nodule measuring 3mm? What exactly is a nodule? I've been Googling, but I'm coming up empty. Also, what does it mean when they say: Heart is compensated?
Anyway, sending my best to everyone! Hang in there, Angela Wright!
Regarding those mistletoe injections—does anyone know who I should talk to for specific instructions? Maybe a homeopath? I was actually planning to set up an appointment for my dad with a homeopath anyway, just to get their take on things. It might be a good chance to ask about the mistletoe too, since he’s already using some other herbal supplements right now. I really hope they're helping him feel better and stay functional, at least.
Best to the rest of you all. Keep fighting the good fight. Wishing you all plenty of strength.
Rachel Wood27 said:Hey everyone, my dad’s been stuck in the hospital at Washington, D.C. Memorial for a week now. Even they couldn't find the primary tumor, so they did a biopsy on the liver metastasis during a strep procedure. It turns out it's small cell lung cancer. 😢 Ever since we found out about the spots on his liver just over a month ago, I’ve been praying it wasn't pancreatic or small cell lung cancer. Turns out, it is. Sadly. They still can't see anything on his lungs—not on CT or X-ray—it's clearly too tiny to detect. As for treatment, they started radiation on his spine because the pain is brutal, along with a low dose of chemo for now. His bilirubin spiked to around 100 this past week, so they're hoping he responds well enough to the chemo so they can eventually place a stent in his bile duct and move him up to a stronger dose. He actually started chemo and radiation yesterday; he's getting Cisplatin, which I think is the standard first line for lung cancer. Just so you know our story, he didn't have any symptoms until those groin and spine pains showed up two months ago—those were the first signs of the metastasis. Back in October last year, he coughed up a little blood a few times in the morning. Not much, just specks, so I sent him to the doctor. They scanned his lungs then, and everything looked fine. An oncologist told me later that things probably started moving then. Dad knows the diagnosis. He knows it's the worst type of lung cancer, but he's staying positive and wants to fight. Angela Wright, I was wondering if it's okay to give him raw propolis while he's on chemo? I've also been giving him beet juice, and his blood work looks decent—he's not even really anemic anymore after that bleeding episode. Everything is more or less okay except for that bilirubin level... Do you have any other recommendations besides propolis?
Hi, Just wanted to check in. Unfortunately, my dad has small cell too. 😢 It'll be exactly one year since we first found out. He's doing alright right now. He has a follow-up appointment this spring. It's a nasty disease, really nasty, but you have to fight. You can't give up.
I have a few questions about my dad's latest discharge papers: Heart and lung X-ray: Compared to the scans from March 5, 2013, there are more pronounced post-radiation fibrotic changes paramediastinally on the right, along with newly developed lamellar ventilation disturbances in the upper right field up to the lateral wall at . No new infiltration or congestion was found. There is no pleural effusion. The heart is compensated. Fiberoptic bronchoscopy under local anesthesia: Transnasal approach. Paretic right vocal cord. Trachea is normal, tracheal carina is sharp. Both bronchial trees show moderate deformation; all openings were accessible for inspection and patent.
I think I get most of it, but I've highlighted the parts that probably need some explaining.
Also, what does "paretic vocal cord" actually mean? Does that mean it's permanently damaged, like, it won't recover?
ruggedpuma47 said:Since I’ve been getting treated over at Jordan, I’ve had plenty of chances to chat with patients from all over the US. While heading in for chemo, I’d run into people coming from Miami, San Diego, Indianapolis, and everywhere else, mostly arriving via medical transport. I can't say for sure if it's a universal rule, but it seemed like almost everyone was using an ambulance or transport service. I have no idea how they handle the follow-up appointments, though.
See, my dad has been taking the bus from San Diego for a year now—for his check-ups, his chemo, his radiation... you name it. And nobody ever mentioned medical transport to us. Seriously. I suppose I'll have to look into it, but honestly, it feels pretty rude. And today just pushed me over the edge. They have this new policy upstairs where they’re trying to get patients out as fast as possible. They want lab results done quicker and everything moving faster. I guess that sounds good on paper, but it feels like they’ve become a bit careless just to speed things up. Um, I actually wrote to Jane about it—they didn't prepare the paperwork for my dad like they originally promised. And now that he's been discharged, they've been calling him all morning. First, they want him to come pick up discharge papers, then they need to send a referral (since he's switching to oral chemo and needs a specific prescription), then he needs to go get a full blood panel done and fax the results back to them... Give me a break! They could have told him all of this while he was still in the hospital and just handled the blood work there instead of playing these games. I'm just so frustrated.
Angela Wright said:You probably need to check with a family doctor about that. Most of the time, they don't want to cover any diagnoses that can be treated locally. I have a feeling it won't go through. 😢
Angela Wright said:That’s the catch—nobody’s going to volunteer information. You have to go out and hunt for it yourself. Honestly, the family doctor should have been the one to lay this all out. Basically, anyone living more than 31 miles away from the treatment facility is entitled to medical transport to the hospital, covered by Medicare.
So does that mean my dad, who lives in San Diego but is getting treated over in Jordan, is eligible for transport from Los Angeles to San Diego? Specifically, once he finishes his tests in a couple of days, is there any guarantee he can get medical transport back home to San Diego? I should probably mention, just in case it messes with the transport eligibility, that he chose to be treated in Los Angeles instead of Miami, even though apparently regulations suggest he should've gone to Miami.
Dad's back at the hospital today for some checkups. He seems fine otherwise, actually acting pretty normal. It’s just that he started coughing again, and when he sits down to eat, he says it feels like that first bite gets stuck, making it impossible to keep going. This has been happening for a few days now. I'm hoping it isn't what I think it might be. I guess I'm just crossing my fingers that it's something else, something not too serious...
Sean Garcia said:I was wondering if anyone knows if there are any private places to stay near the Mayo Clinic—like apartments or just rooms—and what the rates look like?
I guess the Johns Hopkins Hotel comes to mind; it’s right by the Mayo Clinic. Maybe check online for prices. If not, they probably have a number you can call to ask.
Angela Wright said:Look, if I were you, I’d head down to Jordan with my dad and start making some noise. He’s their patient, right? They need to stabilize him. If they really think he needs to stay put, they should give me concrete reasons why anything else wouldn't work for that cough—you know, those specific meds I mentioned. I want a real reason for every single one they turn down. I wish I could be more helpful, but I don't know enough about lung issues to weigh in. Maybe try talking to Sandra and see what she thinks.
Oh, right. Sandra. It didn't occur to me to ask her amidst all this chaos. The issue is that Dad isn't in New York City; he's in San Diego. Everything I just described happened at the hospital in NYC, and there's no way he's able to make the trip out here right now, which is why I'm panicking. The people over there seem completely incompetent. I'll reach out to Sandra. She'll probably have some actual sense to offer.
Angela Wright said:Oh boy. 😢 I really hope they finally step up and do something about this. Maybe you should try heading over to see Cepulic to get a second opinion. It’ll cost you, I know, but at least then you'll actually know if there's anything that can be done about that cough.
I’m just so incredibly frustrated...🙂 So, they gave my dad an IV last night and then basically kicked him out because the hospital was supposedly at capacity. His white cell count is sitting at 2.2 and his platelets are down to 87. Is that actually dangerous? The doctors said those were the worst parts of his bloodwork and everything else was relatively fine, I guess. I called Jordan, and they told me he really should have stayed put, but the hospital staff just keeps insisting there’s no room. Now they want him coming in every single day for blood draws and they'll give him more fluids if needed. For his cough, they just gave him some Panatus Forte and acted like that was the end of it—like there’s no point in messing around with heavy-duty antitussives right now. How does that even make sense? I honestly don't get them. They won't keep him in a bed, he's coughing his lungs out, and their big solution is Panatus? That stuff barely works for my kid when she has a common cold, let alone for him. I feel like I'm losing my mind. I'm not even in the same city, but if I were, I'd make sure they heard me coming. What should I even do? Honestly, I haven't got a clue.
His doctor from Jordan, a pulmonologist. Anyway, my dad ended up in the ER this afternoon because he was feeling pretty rough—dizzy, couldn't even stay upright because his legs were shaking so much. Long story short, his blood work looks bad. The ER doc thinks it might be a side effect from that last round of chemo. They’ve kept him at the hospital on an IV for now.
Angela Wright said:Oh boy. 😢 Maybe check in with the doctor about whether Normabel might dial down the irritation, since it does have that relaxing effect. Either way, I suspect he’s going to need some kind of antitussive therapy—basically drugs that block those cough receptors. If we're talking stronger doses, you've got everything from Codeine and morphine to ethylmorphine, dihydrocodeine, hydrocodone, dextromethorphan, pholcodine, noscapine, and glucine. Those are all opioid antitussives. Then there are the non-opioid options like butamirate, pentoxiverine, or pipazetate. You really should just run it by his doctor.
I don't get why she's being so stubborn about there being other options besides Codeine. Maybe it just isn't cutting it for him, and he actually needs something else entirely. But she just keeps insisting that Codeine is the gold standard for coughs—as if, if that doesn't work, he's just out of luck.
Angela Wright said:Man, 😢 Maybe check in with his doctor. Maybe they could lower the dosage of Normabel, since it has that relaxing effect. Either way, I guess he might need some kind of medication that blocks those cough receptors, if that’s even a thing. You'll probably have to talk it over with the doc.
Well, his doctor is basically saying there's nothing to be done—that the cough is just part of the primary illness and that's that. I don't know, I still feel like there has to be something we can do, but I'm running out of people to ask. By the way, I've seen a lot of mentions of Dr. Shantek here. Even though I doubt he'll have anything new to tell me, does anyone happen to have his email or phone number? Like, does he actually deal with people who aren't his patients via email, or can you just drop by for a second opinion?
Dad’s still coughing like crazy even after his seventh round of chemo, and now he won't touch food at all. This last session was with oral tablets, Hyamin, and if I’m being honest—though I'm no expert—it feels like that treatment actually made the cough worse instead of helping it. That cough is just brutal; it’s completely draining him. Like I mentioned before, Codeine doesn't seem to do a thing. Neither does Api Syrup, Panatus, or even the old black radish and honey trick... nothing works. Does anyone have any actual advice? His doctor says there isn't much they can do because it's just part of the illness. I just find it hard to believe there isn't something, anything, that could at least take the edge off that cough!