Joshua Kim69 said:My husband actually saw an oral pathologist recently, and they prescribed him GlaxoSmithKline, which he’s been using now. On top of that, they recommended laser therapy for his oral cavity along with a series of nine Neurobion injections—we ended up buying those ourselves since they aren't covered by standard insurance and require a special prescription, costing upwards of $33. It isn't just a simple case of candida, either; there's something else going on that causes a lack of saliva and this constant burning sensation in his palate and throat (if I recall correctly)—which is why he finds it much easier to manage if he keeps a sugar-free candy or gum in his mouth. He mentioned that this whole situation, and the treatment itself, has been dragging on for quite some 😢
Why skip the sugar? You generally want to avoid sugar whenever you're dealing with candida. You might also want to ask your doctor about Caphasol (artificial saliva).
Robin Diaz4 said:How does candidiasis actually show up? My dad had some issues in his mouth and was given this gel that cleared everything right up in just two days.
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It usually presents as these thick, cheesy patches on the tongue and deep in the throat. Soor. The standard approach is treating it with a Rojazol gel—though some people find relief by rinsing with baking soda or even sparkling water.
Grace Ross20 said:ruggedfox11, I am just so incredibly sorry I really hope you've been able to find some way to forgive him—and more importantly, I hope you can find some peace within yourself.
Thank you... I was there, actually—I was right by his side when he took his last breath. There were lapses, things that didn't go quite right, but I honestly don't have the strength to go into all that right now... Someone once told me that "birds of a feather flock together," or rather, that one crow won't pluck the eyes out of another, which felt strangely fitting. As for finding peace? That feels like such a mountain to climb right now. It's hard. I just can't wrap my head around the fact that he’s gone. Even just last night, I found myself waiting for him, or starting to talk to him as if he were still sitting there. For those first ten days or so, I managed to keep it together—just sort of moving through the motions—but lately, I feel like I'm completely falling apart in every possible way. I even went to see a therapist, but nothing they said seemed to hit the mark or offer much real comfort, so... I really don't know how I'm going to pull myself through this.
Joshua Kim69 said:I’m almost at a loss for words—my husband is actually back at the clinic today for his second round of chemo. It's small cell lung cancer. 😢 After that first round, we immediately stripped sugar and white flour from his diet entirely. He’s been taking baking soda (about 1-2 teaspoons a day), drinking chokeberry juice three times a day (in small doses), and taking multivitamins, Vitamin C, and a B-complex. I make him these green smoothies—usually a blend of banana, apple, kale or Swiss chard, parsley, a little honey, and some lemon juice or a tangerine—and then I run beet, carrot, and apple through the juicer. His meals consist of bacon, garlic, tomatoes, and plenty of steamed or boiled vegetables, along with cooked turkey or farm-raised chicken. Today, his oncologist also prescribed Prosuro twice a day. He lost quite a bit of weight even before the diagnosis and chemo started—dropping from about 165 down to 143 lbs—so he’s feeling pretty weak on his feet, though he can still move around. He spends a good amount of time outside in the sun during the day, and we take short walks in the evening, though he tires out incredibly fast. We have one of those vibrating massagers for the feet and back, which he uses several times a day (though I honestly am not sure if that's a good idea). I’m actually thinking about calling a physical therapist to see if they could help strengthen his legs through some guided exercises. (My husband is 74.)
You mentioned not using immune boosters during chemotherapy... Out of everything he is currently taking, what specifically should I AVOID the day before and during treatment, and what is safe to continue? Do you have any other advice regarding meal prep or anything else I might be able to do to help? The oncologist hasn't ordered a bone scan yet, and frankly, I don't think my husband could handle lying still for that long anyway, especially since he has this persistent dry cough. His next chemo session is scheduled for November 13th, and we have a follow-up CT scan in December.
Diet doesn't actually have a direct link to the cancer itself. He just needs to eat whatever he can manage to ensure he has enough strength to get through the chemo. Avoid all immunostimulants—including Vitamin C—during the treatment, the day before, and the day after chemo. Keep a close eye on his blood sugar because of the corticosteroids, watch for leg swelling which could indicate thrombosis, and stay vigilant about infections. Also, pick up some Ondansetron to help with the nausea. Anyway, stay strong. You guys will get through this.
Honestly, I’m just completely lost at this point... He saw his psychiatrist today, and they didn't even suggest any new medication—they just officially noted the diagnosis as psychoorganic syndrome. I’ve been doing some reading on it, and honestly, it doesn't seem to align with his current condition (at least not based on the primary symptoms listed), plus, the whole idea of brain cell degeneration is supposed to show up on a CT scan—but his CT came back perfectly normal. Now, his neurologist wants to run an MRI (they did one on his arm, but no gel was used) to check if there are micrometastases on the meninges or if we might be looking at encephalitis—which, again, should be visible on a CT—but his scan was clear. Meanwhile, a friend of mine who is an oncologist—and he really specializes in central nervous system tumors—is saying that a state like this can only be caused by significant metastases, regardless of whether they are in the brain or the meninges. To top it all off, there hasn't been a single word from his pulmonologist. He has been sleeping since this morning—they only gave him an extra pill for "seizure activity" (Tegretol; though they supposedly ruled out seizures) and started him on a Q-pin for sleep (which they actually introduced back on Sunday). He wakes up just long enough for lunch and then drifts right back to sleep. When I went to visit him, he was just sleeping. I mean, how are you even supposed to make sense of this? It feels like everyone is just guessing—and frankly, it's obvious they don't have a clue what's actually happening. I still find myself stubbornly believing that maybe he just needs a decent, uninterrupted sleep to recover.
Angela Wright said:I wouldn't even trade my dog for the care at Firul. I've already told you everything I know.
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That’s exactly why I double—actually, quintuple—check everything they do once we're away from Firul.. Robin Diaz4, listen, when I haven't had a full night's sleep, I'm barely functional myself—let alone after fifteen days. The neurologists managing his care seem decent enough; they're doing their best to get him settled so he can finally drift off and get some actual rest. They'll get him back to his usual self soon enough.
Sending greetings to everyone from our newest department—Neurology! Well, you heard it here first—we’re practically touring the whole hospital at this point. 🙂 🙂> Honestly, it’s been such a massive oversight in his care... I’m actually at a loss for words. Last Friday, as you know, we ended up in the ER and then over at Pulmonology because of pneumonia. His pulmonologist was fully briefed on his mental state—which was completely normal at the time. He comes home on Wednesday, and suddenly he's confused again... Then Thursday happens too. Look, the man is 200 lbs and 6'6", and here I am, barely five feet tall—it’s overwhelming. He’s so weak he can't even stand up; it’s just heartbreaking. Friday morning, I’m taking him to see his primary care doctor for an infusion due to his blood sugar, and he starts panicking. His wife calls 911. They rush us to the local hospital, where he gets NaCl, all while they explain that his mental state is just a result of brain metastases that "might have regressed"—though they definitely haven't. It's ridiculous. He isn't feeling any better at all. He is fully aware of everything, trying so hard to form actual words, and when you look into his eyes, you see nothing but fear, sadness, and shame. But you can't do anything; they just insist he has no idea what’s going on, even though his eyes tell a completely different story. And yet, there they are, being so adamant that he absolutely has to be admitted. Not on my watch. I won't let that happen. But then his sugar spikes again, and they use that as an excuse to call the paramedics again. Back to the hospital, back to being told it's just neurological issues—at which point he started struggling to even say "I need to pee," likely out of pure embarrassment and humiliation. He gets nothing but KCl and the same old explanation about brain metastases. For heaven's sake, where is the actual help?! By the afternoon, he isn't even himself anymore. It’s over. I’m exhausted. The poor man is twitching, and my hands are shaking. A nurse came by to give the infusion, but it did nothing. I truly felt like this was the end—God, please, just don't let him suffer. Then his wife pushes again, insisting he needs the ER because of his arm, so we call them. I look at him, and his expression says it all: "I'll do anything, just please don't make me go back to that hospital." It breaks my heart. The doctor says, "Neurological issues—let's head to the Neurology ER." Great! Let's actually find out what's happening in his head. Just pure luck! We move him from Pulmonology, but the doctor there tells me that if he sends him to Neurology, it would be a "failure in treatment protocol" because the patient is technically a pulmonary case. He basically told me, "You have unrealistic expectations (probably because I saw your email to the Department of Health)," and claimed there's nothing more they can do because of the metastases. "Oh, really? And what makes you so sure of that?" "Well, it's just the standard disease protocol." Disease protocol???? What on earth does that even mean? They just gave him an infusion, Dexamethasone, and KCl—AGAIN!! Not a single neurologist was even consulted!! He’s in a heavy delirium, yet he's conscious of every single thing happening. The nurse on duty actually spoke to him like he was incompetent, saying, "Look, your brain isn't working, you can't process this." I told her, "He is fully aware and understands everything, he just can't speak!" I feel like I'm losing my mind—he has no idea what's happening, he is DYING!! The poor soul, you can see the grief, the anger, and the disappointment on his face. He just wants to go home! He's shaking! And she has the nerve to tell me there isn't room for people like him on the ward!! Finally, we get him home. He can't even stand. His wife is breathing down my neck about the hospital staff. I called his primary doctor, and she told me, "The scans show regression, but the clinical picture shows progression—straight to Neurology!" So that's what happened. And even they didn't have any real answers—they're either calling it seizures, sleep deprivation (he hasn't slept in 15 days), or "the underlying disease"—which is my favorite thing to hear. The brain CT came back clear! So they just left him in the Neuro ICU for them to deal with later! All while emphasizing how much of a mistake it was to treat him this way. Three separate times this man presents with neurological symptoms, and they just dismiss it based on his diagnosis! But WHY?? Why are all patients lumped into the same bucket? Are they trained in medicine or just in how to maximize insurance payouts?! This is devastating!!!
My potassium, chloride, and phosphate levels are all low. Just barely hitting the normal range. I even called the oncology department—they told me there’s absolutely no way this is being caused by radiation. It's just wild to me how much an electrolyte imbalance can mess with your brain—and the fact that it takes such a long damn time to recover? That part I don't quite get. I can wrap my head around anemia or having a low red blood cell count, but this...
Angela Wright said:Radiation trauma can definitely leave its mark on the brain. But honestly, I suspect this is more about an electrolyte imbalance. He really needs to focus on recuperating.
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Well, we'll find out soon enough. His blood sugar is spiking, so we're back to monitoring with the Hegel—they'll probably run an electrolyte panel next, too.
Robin Diaz4 said:Dear ruggedfox11, we all know just how tough this journey is for you right now. Hang in there—there are definitely rough days, but there are good ones too. I'm really hoping the CT scan comes back with good news!
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The CT shows some regression, but things are still pretty unclear.
My dear husband was asking to be discharged today. He finally got the green light. Yesterday morning, they stopped his IV fluids—the potassium and glucose infusions. We have a CT scan scheduled for tomorrow, and his CBC looks alright, though his red blood cell count is still recovering quite slowly. What’s really weighing on me, though, is that from yesterday morning until this very moment, he hasn't had a single liter of water. Today, I could barely get him to finish half a liter—and even then, it was a struggle. He isn't losing weight rapidly, but he's so confused; he'll say one thing and clearly mean another, and his sentences just don't seem to connect to what he actually wants to do. His writing, however, remains normal. If you look at the big picture—low potassium, the primary illness, dehydration, anemia, and pneumonia—it all points to the same thing... but given how bad he was on Friday, even after the fluids were restarted, I truly believe he's still severely dehydrated. It is just incredibly difficult to witness and live through this...
Robin Diaz4 said:Everyone on this thread seems to understand you... How are things today? I really hope things are looking up!
As for the situation... He won't be getting any more transfusions because his levels have hit her lower limit—not even close to 100, let alone reaching a normal baseline. I found out he can take iron supplements alongside the Lovenox, but honestly, his mental state has just completely spiraled. So, they’re going to discharge him tomorrow to go home on his own terms—following the surgery and the CT scan—along with some oral antibiotics. I'm almost at a loss for words; part of me thinks it would be smarter for him to stay put, but since being here is causing him such intense psychological distress, it's better to let him be home where we can watch over him. I just pray that the CT scan comes back stable regarding any cancer concerns.
Robin Diaz4 said:My logic tells me everything you guys are saying—I really do get it—but sometimes that irrational side of my brain just takes over... I can't stress this enough to everyone in this thread: please, please take care of yourselves. I didn't listen back then, and I nearly destroyed myself both mentally and physically.
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You'll understand what I mean—right now, I feel like I've been tossed straight into a pit of lions, or maybe dropped into a pool full of sharks.
It’s true—like Terry Lopez18 said, these things end up affecting everyone. I’m really kicking myself right now, but I can clearly see where this path is heading... It’s just constant bouts of depression, reaching for a beer every chance I get, picking fights with everyone, snapping at people for no reason—nothing brings me any joy anymore. To be fair, I’ve never been the most rational person; my world has always been either pitch black or completely white. But even then, it was in these unreal, extreme shades. And when that "white" phase hits, you feel happy, but that "black" side? It’s nasty. It’s heavy. It drags you down. And the absolute worst part is being fully aware of it all, yet somehow slowly surrendering to it—you know, like you're barely keeping your head above water; that tiny little voice of reason is still there, but...
Robin Diaz4, this is our first time navigating this kind of mental headspace together. I was just reading somewhere that that specific antibody might actually cause the blood counts to drop even further. Oh boy...
I used to dream about my grandfather every single month—every single night, really. I didn't take him through hospital rounds or anything; he passed away in his sleep. But I spent a good portion of my childhood by his side, and he taught me so much about life. The last time I saw him in a dream—which was nearly 13 years ago now—he was sitting right there at the table with me, looking me in the eye and saying, "Everything is going to be okay; just cherish what you have." He hasn't visited my dreams since, even though I think about him constantly and mention him all the time. Even now, after all these years, I still find myself half-expecting to see him standing in the doorway or to hear his voice on the phone. Your reaction is completely normal; it’s only natural that it hurts so much... My husband is still with me, but I still catch myself wondering if I could have done something differently back then. If I had pushed him to get his progesterone levels up to 2ng/dL, maybe the course would have been different, or easier to manage... I don't know. But I know that feeling of "if only I had..." all too well. Everything you're feeling is still so raw. People love to say that time heals all wounds and that life moves on... It does move on, but I don't think it "heals" per se. It just gets a little easier to carry. Hang in there!
Here is a little update on our situation... On Friday, I took him to get his blood work done at the clinic. Around one o'clock, the nurse called me to say the results were ready—she’d already written him an urgent referral for internal medicine because there was something in his blood that absolutely shouldn't be there. Honestly, my heart just sank, but we pushed through. He was driving just fine and managed to park right in front of the hospital, but then suddenly, he couldn't even stand on his own two feet. My God, I was thinking—it isn't like he's nothing, yet he had zero strength left. I went in to drop off the referral and grabbed a wheelchair. The Hegel clinic was packed to the rafters. We waited a bit, and then—total blackout. He completely lost it. He didn't know where he was, who he was, or even who I was; he just stared blankly at a single point, looking right through me. He tried to get up from the wheelchair but physically couldn't—it was total delirium. I can't tell you how much I wanted to cry watching him like that. Once we got inside, the exam went okay. When the internist asked why he was being sent over, I honestly had no clue—just that it was something in the blood. I explained to the doctor that he’d been dealing with diarrhea for five days, issues with his fibrinogen, and that he hasn't been eating well and is barely drinking anything. They decided to repeat the CBC and run a chest X-ray. We stepped out for some fresh air while waiting for the results, and he was drifting in and out of consciousness again. Damn, my mind immediately jumped to the absolute worst-case scenarios. When we went back in, they hooked him up to an IV. The doctor thinks the imaging shows pneumonia, but she wants to send him to a pulmonologist to confirm everything and get a specialist's opinion. And my man? Still acting totally out of it! The imaging and the presence of erythroblasts suggest pleuropneumonia, severe anemia, dehydration, malnutrition, critically low potassium, and fibrinogen issues—he has to stay. It's just overwhelming. I found myself thinking, if this really is the end, maybe it would be better if he didn't know who he was, but I refuse to let him stay stuck in a hospital bed. However, the doctor on duty could see clearly that he wasn't himself, and I knew I couldn't just make the call to leave him there. By yesterday morning, he was still in that same mental fog. His attending pulmonologist arrived, and I straight-up asked the wife if he was in the terminal phase. She told me he isn't even close to that; he's simply in this state because of the anemia, the fibrinogen, and the dehydration. She confirmed the severe pneumonia, so now it's antibiotics, blood transfusions, IV fluids, glucose, and a CT scan—they need to check some enlarged lymph nodes to see if it's due to infection or disease progression. We returned in the afternoon, and he finally started coming back to himself. He began eating, moving normally, and actually functioning again. This is going to be a hard lesson for him: he cannot refuse to eat! He’s on Floxin now, but his blood work from this morning showed that his levels dropped again despite the transfusion—we're just praying that's just a side effect of the infection and the antibiotics...
Well, here we are... We’ve just finished the second cycle of topotecan. Honestly, looking at the follow-up bloodwork was a nightmare—white blood cell counts are low (with low neutrophils and high lymphocytes; after the first cycle, it was actually the opposite, with low lymphocytes and high neutrophils). On top of that, he had a fever hitting 102.2 for three days before it finally broke on its own. The doctor decided he needs to be on Dexamethasone injections for at least three days, so we have another blood check tomorrow. Blood sugar is stable and the platelets are holding up okay, BUT we finally figured out why he lost his sense of taste and developed that hoarseness—it turns out it’s freaking Candida. I insisted his oncologist take a look at his throat the day before yesterday, and she said it was covered in buildup, so they put him on Rosary immediately. Anyway, there's never a dull moment around here.