Posts by Angela Wright

Dana Martin87 said:Yeah, maybe his doctors could have stepped up sooner? Regardless, he was in pain for 3g.

There was a suggestion made, but if my memory serves me right, he started out with a mountain of metastases. Because of that, they flagged him as high-risk right from the jump. They just didn't want to take the gamble. 😔

Dana Martin87 said:It’s been a while since I posted here. My dad was diagnosed with colon cancer back in the summer of 2015. He had two massive malignant tumors; things had clearly been neglected for a long time, probably growing for about ten years, and his blood work was a disaster. It ended up being emergency surgery to remove the tumors and a section of his bowel.
17-18 Two rounds of Chemo. No real results. By the spring of 2016, we found out the cancer had spread to his abdomen and there were spots on his lungs.
Major surgery followed in the fall of 2016. They did a "debulking" procedure to handle the metastases and removed his colon, spleen, and part of his pancreas. Recovery was a long, grueling slog.
The most recent CT scan showed some spots in the fatty tissue near his navel. He just had outpatient surgery for that a few days ago.

Bottom line: we’re actually pretty satisfied with where things stand. We realize there isn't a permanent cure, but he’s holding up incredibly well—staying active, walking around, and staying mobile. Most importantly, he isn't in pain. We’re just hoping he stays this way for as long as possible.

It’s a good thing they managed to pull off that debulking. Honestly, if they hadn't, I think Vedran would have given us hell on this forum for letting it get that far.

briskskipper71 said:Hey everyone,
My mom had surgery on her left breast two weeks ago because of some changes found during a mammogram. It was likely benign, but they couldn't rule anything else out—BI-RADS was 2/3. We just got the pathology report back today, and here is what it says:

classic variant invasive lobular carcinoma of the breast
Nottingham histological score 6, grade 2
AJCC TNM pT2NxMx
lobular carcinoma in situ LCIS
Suspected positive resection margins in multiple foci
Lymphovascular invasion is clearly not observed

Can someone help me make sense of this? It feels like it was caught early, but it definitely doesn't sound harmless. My mom was born in 1955.

It was caught in time. The lymph nodes aren't involved and, thank God, there are no metastases.
She might undergo some preventative radiation. After that, it’ll just be regular follow-ups.

Robin Diaz4 said:The hardest part for me is watching my dad struggle to accept that his time is coming... honestly, I burst into tears just thinking about it right now. Maybe that denial is actually what gives him the strength to keep fighting? He’s currently on day three following his second round of chemo. The last two days were pretty rough—not necessarily physically, but more mentally. Sure, he feels wiped out after the chemo, but he processes it so tragically every single time. Even catching a cold hasn't helped; he's on antibiotics now. I want to start boosting his immune system today, but I’m honestly terrified to try. Is it okay to use native propolis and beta-glucan together? I desperately want him to get over this cold quickly, but I'm paralyzed by the fear that I might somehow end up feeding the cancer. This damn disease.

Tapatalk You Can. You won't be feeding it, don't worry. Both of those have proven anti-cancer properties.

melloworca6 said:Even if those levels aren't elevated, it doesn't mean you can just ignore the rheumatology side of things. Honestly, sticking with a rheumatologist is your best bet; they can easily refer you to a physical therapist if the situation calls for it.

And vice versa 😉

ruggedfox11 said:I wasn't even aware of it. There's a 17lb difference between us, so logically, he should be the one going first. But I'm living by that idea that you never truly know what life has in store. I didn't include illness in that equation, though. I still haven't reached the acceptance of mortality, either. Sure, things are looking up for him, but... all of this is forcing me to confront my own mortality. It’s frustrating, and it's wearing me down mentally.

Try to view this as your own personal genesis—your own moment of catharsis. It isn't the facts themselves that are crushing you; it's the denial and the refusal to face them. Once you finally accept things for what they are, and embrace the "it is what it is" mentality while living firmly in the here and now, life becomes much easier to navigate.
Regarding faith and proof, I went through my own version of this catharsis and realized that an invisible finger has been nudging me my entire life. Everything happens for a reason, shaping me into who I am today and providing the wisdom I carry. There have been moments where life absolutely trampled over me, but those exact experiences made me a better person. I wouldn't change a single thing. Life, the universe, God, Mother Nature—whatever you want to call it—is incredibly pragmatic, yet everything is deeply interconnected. Everything is linked, and everything has an impact.
I hope you find peace. That’s the most important thing.

Drew King5 said:Hey there.
Symptoms:
- Joint pain (hips, shoulders, elbows, shoulder blades, neck, and even my tailbone—never my legs, knees, or anything like that)
- It’s a localized, pinpoint kind of pain that hurts like hell when you press on it.
- It doesn't ache through the whole joint; instead, it hits one tiny spot, but it's so intense that the surrounding area just radiates the pain.
- My range of motion is basically non-existent during these episodes because the pain is so sharp.
- Swelling and redness aren't really a regular thing.
- It starts off slow, then builds up over a few hours until it's unbearable, and then it just vanishes after two or three days like it was never there.
- It never breaks out in multiple places at once; it just grabs one specific joint and holds on tight.
- Honestly, I'd bet it's more about the ligaments connecting to the bone at the joint rather than the joint itself.
- These flare-ups happen every month or two.

I've seen a doctor two or three times already. They ran blood work which came back totally normal, so they just handed me some painkillers and topical creams.

I'm 34, stay active with sports, and my weight is pretty much right in the middle. I don't drink, I smoke occasionally, and my diet is fine.

Searching for answers online has been driving me absolutely insane, especially since my doctor seems completely clueless about what this actually is.

If anyone has dealt with anything similar, any help would be huge.

Find a doctor who will actually refer you for comprehensive blood testing if they haven't already.
•Rheumatoid factor
•Sedimentation rate (ESR),
•C-reactive protein (CRP).
Based on those results, have them send you to a rheumatologist if things look positive; if everything comes back clear, see a physiatrist.

Take a look at this link.
https://arthritis-info.org/types-of-arthritis

ruggedfox11 said:He’s fine, but man, I just got hit by a freight train...
How do you deal with the acceptance of mortality? How do you wrap your head around the fact that one day, you’re going to lose someone?
Parents, friends, family?
A spouse?
Why does this stuff always strike when you're completely caught off guard?
Is anyone actually prepared for this?
Why do diseases exist?
Why is death even a thing?

Why, why, why?!!

The only way through is to face it head-on.
Everything moves in cycles; everything is born, and everything dies. Life happens in that space in between. And you have to LIVE. That's just the biological reality we're stuck with.
People who believe in God tend to focus on a spiritual body, viewing it as more significant than this physical shell, which makes navigating this easier. I hope you find some faith in that.

ruggedfox11 said:Rachel Wood27 already laid it all out for you. 🙂
Prophylactic brain radiation is standard protocol when dealing with small cell carcinoma. Her pulmonologist actually confirmed this to me just today—it’s the universal approach. I've even run into cases where they didn't bother with preventative brain radiation until metastases had already set in.

Unfortunately, this beast has a massive appetite for the brain.

I tracked down a study.
http://theoncologist.alphamedpress.o...t/5/4/293.full

Either way, there's clearly a scientific foundation for it, though the researchers explicitly mention they aren't 100% certain about the optimal dosage yet. They're still looking to define those specific doses through ongoing studies.

Honestly, I am incredibly cautious when it comes to messing with the brain.

ruggedfox11 said:Here I am again with an update—no questions this time, hopefully 🙂

Anyway, you can't just get a PET/CT without a specialist referral. My GP basically gave me a lecture, insisting that any unnecessary radiation exposure increases cancer risks and that I shouldn't be hunting for redundant tests. Fine... I’ll play along with her logic.

The latest blood work came back, and quoting the doctor, it was "satisfactory." All his cell counts have dipped compared to last time, but everything is still within the normal range.
I grabbed his discharge papers from the outpatient clinic, and she confirmed regression (meaning the primary tumor is shrinking). He’s finished four cycles, and before he starts the fifth, they’re sending him for a CT scan of his chest and abdomen to decide if he’ll pull through all six rounds or stop after five. After that, they’ll look into preventative brain radiation. However, they won't radiate the main tumor in his chest because it's considered advanced stage; they'll only touch that area if there are issues with breathing, swallowing, or—God forbid—bleeding.

On top of all that, she mentioned that while the average survival for this disease is about 3 years, she’s seen plenty of cases where the damn thing stopped showing up on any tests at all, sometimes lasting much longer than 3 years (at least when I asked).

No questions for now (thank God! :-) )

If I were you, I’d definitely seek out a second opinion from a neurologist and a neurosurgeon regarding that "preventative" brain radiation. Honestly, I've never heard of irradiating the brain preventatively. Brain tissue is incredibly sensitive to radiation, and you end up with nothing but necrosis. I actually attended a presentation at an oncology conference where a neurosurgeon was arguing with oncologists, claiming they unnecessarily blast the whole head, making it impossible to tell if subsequent damage is actual necrosis from the radiation or just a progression of the cancer itself.
Basically, it feels like a system designed to save money—it's cheaper to just radiate the head once than to pay for follow-up MRIs every six months.

ruggedfox11 said:What are the requirements for that? Is there a way to look into caregiver status?
If you know, obviously.

Check with the local social services center. Beyond that, I can't say for sure, but I assume the procedure is similar to how things work for children. You head down to the center, find the social worker assigned to handle those claims, and bring all the medical documentation regarding the patient's condition. From there, you just wait for an official notice or for a medical board to either visit the house or make a decision based on the paperwork provided.
Your best bet is to ask directly at the office.

To be honest, I’m not entirely sure what the deal is for people who have jobs and plan on returning to them once they aren't needed as a caregiver anymore. This setup usually implies quitting your job to become a full-time caregiver. When it comes to sick kids, parents have the option to take extended leave through Medicare while staying employed—either working part-time and getting half your pay from the employer and half from the government, or staying home more often while Medicare pays out $700 roughly. I'm worried that kind of flexibility doesn't exist when you're looking after adults.

Robin Diaz4 said:I’ve been doing a lot of thinking today. My dad has been home for the last week or so, and luckily, I’m self-employed, so I can work from home or just step away if things get chaotic. But it makes me wonder—how do people manage this when they don't have that kind of flexibility? Dad’s condition changes by the hour; one day he could easily handle a full schedule, and the next, he barely has the strength to walk to the bathroom. What happens if there's a situation where nobody is available to stay with him? It probably won't happen, but life is unpredictable. These thoughts have been circling my mind all day; if I hadn't been home today, the mere thought of it would have terrified me...
Basically, is there some kind of service for this, or do I need to hire someone privately? How does it actually work? Is there anything out there where a medical professional comes by when needed—like, say, twice a month—where I pay them for their time without them being a full-time live-in caregiver? Or am I just dreaming up nonsense?

It used to be a real struggle and people just had to find ways to scrape by, but as of February 1st, there's a new law in effect that allows you to qualify for caregiver status for someone dealing with an illness this severe.

Anthony Rodriguez7 said:Angela Wright, I’m really glad you reached out. I’ve been reading through a lot of your posts and was honestly hoping you might have some insight regarding this paraneoplastic syndrome... I need to double-check if my dad had a CT scan with contrast. The doctors are claiming his condition is so dire specifically because of that syndrome, but then they say the only way to treat the syndrome is to target the tumor itself—except we can't treat the tumor because it’s completely resistant to chemo. It feels like we're trapped in this vicious, circular logic where we’re just spinning our wheels and wasting precious time. His sodium and potassium levels are finally stable, so now they're just running blood work every single day and that's basically it...
Robin Diaz4, ruggedfox11, I noticed you both mentioned beta-glucan and raw propolis. That’s exactly what we started giving Dad the second we got the diagnosis. We even kept him on it during chemo because the doctor said it was fine, and I'd read somewhere else that it was okay too. Now I'm sitting here wondering if we made a mistake... I clearly wasn't thinking straight.
Rachel Williams, I am so happy for your mom—I truly hope things stay that way. And thank you for bringing up RS oil; we actually picked some up yesterday. I asked the oncologist about it, but he advised against giving it to him while he's in this state (given how disoriented he is). But get this—last night I dreamed about Dad, and he told me he came back specifically for the oil. 😢

http://emedicine.medscape.com/article/280744-overview
http://www.epatientdave.com/2011/06/...n-boston-area/

Just from a quick skim of what I could find, I stumbled upon several cases where doctors successfully managed numerous neurological symptoms using cannabioids.
Do a bit more digging, print it all out, and then take it to the doctor to start a conversation.
If I were in your shoes, I’d give it a shot. There’s absolutely nothing left to lose.

Robin Diaz4 said:So, does that one-week window where you scale down from a high dose to a low dose also count as being "between cycles," or should I avoid using anything during that time too?

If I were you, I’d just pause. It seems to me there's a reason the cycle is structured that way—the higher dose has a prolonged effect and clearly triggers certain biological mechanisms that need time to settle.

Robin Diaz4 said:I find something new to nitpick about him every single day, but on days like today, it’s an uphill battle. If nothing else, it looks like he's trying to eat his way out of depression—he absolutely demolished his food today! Rachel Williams, I totally agree that your mom deserves that book. Personally, I’ll go as far as saying a positive mindset is worth more than any prescription; the best medication in the world won't do a damn thing if you just give up on yourself.
So, I have a stupid question. My dad is on a cisplatin and gemcitabine chemo protocol. The doctor explained that he gets one dose during the first week and a different one the second week, which makes up one full cycle. Then there's a two-week break before the next round starts. He's scheduled for four of these cycles. My "stupid" question is about the dietary supplements we use, since they usually advise against taking them while undergoing chemo. Does that mean he can only take them during those two-week breaks, or should he avoid them entirely until all four cycles are finished? I couldn't find a straight answer online, and my doctor thinks all these supplements are just nonsense and tells us not to bother. We're currently using native propolis and beta-glucan.

On the actual days he's receiving chemo, he shouldn't be taking any antioxidants at all. They bind to free radicals, which means they could potentially neutralize the effectiveness of the chemo itself. You want to save those for the gaps between cycles to help with recovery.
Keep in mind, both native propolis and beta-glucan are potent antioxidants.

One of my kids unfollowed this thread. I was actually sitting here wondering why everything had gone quiet, thinking maybe everyone was doing fine, and then I log in today only to realize I've missed two whole pages! 😣

Anyway, regarding those brain CT scans for the paralysis. Were they done with contrast?
I’d strongly suggest getting an MRI of the head with contrast instead. These kinds of neurological deficits and paralysis—especially when it hits just one side of the body—simply don't happen out of thin air without some kind of visible head trauma. It is absolutely critical to get this handled immediately; if we are looking at brain metastases, they need to start radiosurgery right away!

boldfalcon542 said:So, this thing hits you out of nowhere. I didn't bother checking my temperature during the first couple of days because I honestly didn't feel feverish. It started with a stuffed nose, some stinging, and a ton of mucus. I felt wiped out, but not quite that heavy "flu" kind of exhausted. After about two days, the typical cold symptoms kicked in—watery eyes, runny nose—and then it felt like all that phlegm was just stuck deep in my chest. I tried to work out to shake it off, but no luck. My chest is wheezing and making these rattling sounds, but I can't seem to clear it out. Around day 6 or 7, things finally start to loosen up and I can cough it up. Usually, the nasal discharge is clear and pretty heavy. Then, on day 8, I started coughing up bits of blood mixed with the mucus. I went to get some blood work done, and most things were fine, including my sedimentation rate and CRP (which was 5.5, just barely over the 5 limit). A few things were slightly off, though: my RBC was 5.18 (ref 5.08), MCV was 77.6 (ref 83), MCH was 25.9 (ref 27.4), MPV was 11.1 (ref 10.4), neutrophils were 73.6 (ref 72), and lymphocytes were 18.9 (ref 20).

The nasal swab came back as "normal nasal flora."

Between days 8 and 11, the blood in the mucus either disappeared or was just tiny little specks. But today is day 12, and I woke up coughing up a massive amount of mucus with those little capillaries and vessels again. To be fair, I took the dog for a walk in the freezing cold last night, and I could definitely feel it aggravating my chest.

The whole thing has been like this: I don't cough constantly, but when I feel that thick stuff hitting the back of my throat, I basically pull it up and hack it out.

Here’s the kicker: I’ve been on sick leave for two weeks now. I’ve gone through garlic, onions, every home remedy under the sun, and rinsed my nose until I was blue in the face, but I feel like I haven't made any progress at all (aside from the fatigue finally lifting). In fact, I coughed up a lot of that bloody mucus today, and my morning nasal discharge turned yellow—which it wasn't before—along with some crusty greenish bits.

My doctor is some young resident, maybe 18 years old or something, covering for someone. She didn't even listen to my chest; she just kept harping on about how much water I need to drink. I actually coughed up a bunch of that bloody phlegm right in front of her, and she didn't even blink, let alone order any tests. I ended up paying for these labs out of my own pocket.

I'm starting to worry it might be some kind of fungus or mold. I work in an old archive facility where the conditions aren't exactly great—we're talking old-school, century-old mold issues, not a modern HR office.

What do you guys think? Is this just a nasty virus, or should I just head to the ER since my temporary doctor clearly doesn't give a damn about what's going on with me?

Thanks.🙂

It sounds like you’re dealing with an allergy flare-up that’s starting to veer dangerously close to asthma. If this hit you right as a viral infection was already kicking your ass, you've basically been hit from both sides. That tightness in your chest is a massive red flag—you need to get on some Albuterol immediately and schedule much more thorough testing. This isn't something you can just brush off. My daughter ended up in the ICU because she developed atypical viral pneumonia as a direct result of this exact situation. You really need to have a doctor listen to your lungs and get a chest X-ray if things don't clear up within two weeks. It's also worth having them run blood work to check for specific allergy markers. Don't mess around with this.
Look, if you want my advice, grab some Mucinex for first aid; it thins out that bronchial mucus so you can actually cough it up more easily. You should also pick up some Claritin or a similar antihistamine, but don't bother starting it until you've had a blood test to confirm an allergy. It won't make things worse, but if allergies are indeed the root cause, you should see a noticeable improvement after a few days of taking it. Ideally, you’d have a doctor write you a prescription for Albuterol and Aerius—which is a higher-quality antihistamine you can only get with a script—and get a referral to a pulmonologist if you don't feel like managing this whole mess on your own.
Pick up an inhaler and start using saline. It’s a total game-changer. Also, you absolutely have to rinse your nose with saline twice a day. You can buy those dedicated rinsing kits, but honestly, you can just grab a large syringe and DIY it—just lean over the sink, tilt your head to the opposite side of the nostril you're working on, and spray the liquid in so it flows right through to the other side. There are a ton of tutorials on YouTube showing exactly how to do it.
Don't get worked up over micro-bleeding. It’s usually just a result of irritated membranes or straining. If you start seeing significant bleeding or if you have an episode of severe shortness of breath, head straight to the ER.

Honestly, this documentary is incredibly well-done. What hit me hard was how much we still lack when it comes to palliative care—specifically that transparent communication with doctors. Ten years ago, I had to Google everything myself just to make sense of things, and frankly, nothing has changed since then.
There’s a man in the film who takes a completely rational approach to his acceptance of mortality. He made the choice to pass away at home on his farm. He actually sat down with his grandson and asked him straight up if he wanted to talk about death or if it was too heavy for him. The kid admitted it was tough, so the grandfather kept it simple: he just wanted the boy to understand that he isn't afraid. He explained that death is just a natural process, that he’s lived a full, rich life, and that working the land taught him to accept death as just another part of the natural cycle. The kid handled that conversation remarkably well.
Toward the end, just hours before he passed, the man said he had never been happier. Sure, his mental state took a bit of a hit because of the pain and the confusion that comes with those final days, but overall, he felt these last moments were the best of his life. He spent them surrounded by the people he loved most, in the place he loved most.
Do yourself a favor and watch it. From my perspective, seeing it might give you some personal peace, regardless of what you're currently facing. We are all mortal. Shifting your mindset like this can really help you navigate everything and finally get rid of that knot in your stomach. For me, it was cathartic.
You can find it on the HBO Max platform.

Sending good vibes to everyone
I just finished watching a documentary called "acceptance of mortality" about people facing terminal illnesses and how they deal with the end. There was one man with a brain tumor that really hit home. It triggered so many flashbacks that my husband and I spent most of the film just crying together. Now, ten years later, everything I went through—all those realizations and deep thoughts—is finally being validated. For me, this isn't a quick fix; it’s a lifelong process that will likely continue until my very last breath.

Robin Diaz4 said:They’re claiming it feels like someone is literally ripping their organs out. Honestly, if that's how much pain they're actually in, they might as well call it quits. Their motivation has completely hit rock bottom. 😢

What kind of pain meds were they given? They need to get their dosage dialed in properly.