Posts by Angela Wright

Dr. Miller and the rest of you, I’m not sure if you remember my situation from those previous threads regarding my lab results and that terrible liver panel...
Anyway, I just had an MRCP done (the referral was for suspected liver lesions and microcholecystiasis, plus my stomach has been acting up, so I’m feeling pretty lost and could use some help interpreting this.
The report says "less is more" because everything looks fine—dimensions are all normal—except for the gallbladder. Unlike what showed up on the ultrasound, the MRI shows the gallbladder is kinked at the neck where it transitions into the cystic duct area. Also, near that neck area, they found a small, oval, wall-adjacent defect about 3mm in diameter, which could be a tiny stone stuck to the wall or a small polyp. Everything else—widths, flow, the liver itself—looks great; no focal lesions. Pancreas, kidneys, spleen, and adrenals are all clear.
Is it possible that the sludge seen on the ultrasound just filtered out, or is it invisible on an MR? And what am I looking at now with this kinked gallbladder? Could that folding be a result of those two subsequent attacks I had after the initial ultrasound? Just to remind everyone, that third-to-last attack hit me right while I was breastfeeding; my kid shoved their arm right under my ribs and I had an instant flare-up. It was early morning and I hadn't eaten anything besides tea, so in my opinion, my posture while nursing must have triggered it.
I did a little Googling, and apparently, these kinds of folds usually happen to older women and can be dangerous. 🤔 Am I going to be rushed into surgery immediately, or am I just waiting for the next attack to strike? 🙂

edit: I haven't done the liver panel yet because they told me to wait until a few days before my follow-up appointment (I have a standing referral for labs), so I don't know where I stand with those numbers, but the MRI says the liver is okay. Should I just head down to the clinic and get the bloodwork done now anyway?

Carl Kern66, until things start moving again, you might want to take a break from the propolis, otherwise, it’s just going to cause more of a blockage.
Here’s a foolproof way to get things moving—I’ve tested this on my mom, myself after a heavy meal, and my kids. Head to a local pharmacy and pick up some liquid glycerin and a syringe. Fill the syringe with about 1-2ml of glycerin and administer it rectally. Usually, nature takes over within a few minutes. Honestly, one nurse I knew at the hospital after a massive steak dinner was ready to kiss my feet because this saved her from two days of pure misery. 😁
Let me know how it works out for you. 😉

Carl Kern66, Rachel Wood27 hit the nail on the head. Things are going to look a whole lot brighter once the actual treatment kicks in. This phase—where you're just staring down a diagnosis and trying to wrap your heads around it—is easily the most brutal part mentally for everyone involved. It’s the struggle itself that builds character. You have to take it one day at a time and just tackle whatever obstacle is sitting right in front of you. You can't sprint toward a future that hasn't happened yet. And listen, save the tears and the pity parties for someone else; don't do that in front of Dad! Never forget that this is primarily his battle to fight. He's the one dealing with the physical reality, while the rest of you are riding the emotional wave. As hard as it is for you, he’s carrying an even heavier load because he has to navigate his own situation while simultaneously managing all of your emotions. Don't let him lose his sense of normalcy. He has a problem to solve, and he needs to focus on solving it.
Stay strong and stick together.

Brian Thompson2 said:So, I’m looking for some advice here... I was walking through a coffee shop the other day—just minding my own business—when this little Pekingese sitting at a table with its owner and a few friends decides to nip at my sweatshirt. At first, I didn't even realize what happened; I just thought maybe I brushed against something because I didn't see any actual holes in my clothes. But then I went to the restroom and noticed this little surface mark, maybe about 4 mm long. It looks mostly like a scratch, though one tiny part might be slightly deeper. Honestly, I didn't say anything to the owner afterward—didn't ask if the dog was up to date on shots or anything... I just kind of froze up in the moment and didn't know how to react.
Anyway, after my family kept nudging me about it, I called my doctor. They told me there’s really no reason to freak out, but to just keep an eye on it—watch for itching, swelling, or any redness. It’s been three days now, and none of that has happened.
But, you know, some people are telling me I should probably head into the clinic and ask about a tetanus shot. I really don't want to be "that guy" who overreacts and rushes to the doctor for nothing, but still...?
If I remember correctly, the last time I got vaccinated was probably over ten years ago back when I was in college.
What do you guys think? Should I go get the shot or just let it be?

It's pointless. If it were actually necessary, even your doctor would have suggested it immediately. For God's sake, we're talking about an escort dog that basically spends its life crawling all over furniture, sleeping in beds, and peeing on weeds growing through cracks in the sidewalk.

Carol Smith27 said:Here I go again... my dad just had surgery to remove a tumor. The doctor said it was a massive 9 cm beast. Interestingly, neither the previous specialist nor the follow-up colonoscopy caught it before the actual surgery. I honestly can't tell if that’s a good thing or a bad thing. Regardless, the surgery went well, and now we’re just waiting for him to recover. Does anyone know what the protocol is once he’s discharged from the hospital? When should we reach out to the oncologist? How long does it typically take to get the pathology report back? And is there any chance this could actually turn out to be something benign?

Once he's out of the hospital, you're essentially playing the waiting game for the pathology report to figure out exactly what you're dealing with. You're usually looking at about a 10-day wait. Once those results land, you take them straight to the oncologist if they're needed, and if treatment is necessary, that usually kicks off about 3 to 4 weeks after the procedure.
Given how large it was and the fact that there aren't any surrounding metastases, there's a decent shot it was something benign or at least a low-grade malignancy.
Bottom line: based on what's been said, things are looking positive for now.

Daniel Hughes79 said:Thanks for getting back to me.
I told my primary care physician what was going on, and her response was basically just, "Yeah, plenty of people deal with that." That’s it. End of story. 🤷
Are you thinking epilepsy or something? Since you mentioned an EEG.

There are several neurological issues you need to rule out. You have to push your doctor for a specialist referral! Telling you that "lots of people have this problem" isn't a medical diagnosis—it's a brush-off. Sure, plenty of people suffer from all sorts of conditions, but they actually get diagnosed, just like plenty of people undergo tests only to be told everything is "fine" when it clearly isn't. Don't let them cut corners on your care just to save some insurance paperwork!

I know exactly what you’re getting at. We started out down that same path, but it didn't take long to realize the whole point of meeting up was evaporating. It just turned into a cycle of constant complaining about the same old grievances without anyone actually lifting a finger to fix them. Eventually, those gatherings just drift aimlessly unless there's a real push to move toward something bigger.
In any case, I truly wish you the best of luck with the funding and resources. Everything carries a price tag—from renting out meeting spaces to providing the specialized coaching you offer—and the current membership dues simply aren't going to cover the overhead.

cosmiclynx14 said:Hey everyone... right now, both my family and I are fighting this disease head-on.
My dad has colon cancer that has already spread to his liver.. 😢

What I really need to know is where to start if I want to set up a non-profit here in my hometown to help patients and their families.. Who do I contact? The local City Hall, the health department, or somewhere else? Does it have to be a major city, or can it just be a small town or county level organization!?

To start a non-profit, all you really need is three people. You can find more details here.
Look, as someone who dove into this with nothing but pure altruism and massive enthusiasm—only to come out the other side having failed quite spectacularly, to put it mildly—I have to warn you: this is an incredibly treacherous and thankless game. You need a circle of rock-solid, trustworthy people around you from day one. You also need a bulletproof legal statute, someone who actually understands how to handle finances and bureaucracy, and someone capable of writing grants, because without those things, the organization won't survive the month. Unfortunately, when it comes to cancer support groups, most people only show up when they have a crisis. They expect you to fix their problems for them, but the second you need them to volunteer or even just show up to an annual meeting—which is a requirement for the non-profit to stay active—everyone suddenly has a conflict. Everyone makes noise when they need a hand, but once their problem is solved, the room goes silent. And don't even get me started on the stress of dealing with members who think their membership gives them the right to harass you late at night or demand special treatment... it's everything. Usually, the actual work falls on the shoulders of two or three people while everyone else just offers "thoughts and prayers." On top of that, you’re being hunted from all sides by corporate vultures. Some companies have legitimate, well-thought-out strategies for working with non-profits, but others will literally chew you up and spit you out. You have to navigate them perfectly, but the catch is, you can't avoid them. There are even predators who target brand-new organizations, join the board, and then manipulate the whole thing to serve their own interests or some third party's agenda.
So, seriously, think long and hard before you jump in. For me, running an association mostly brought misery; it cost me so much peace of mind that I nearly lost my child to the stress, not to mention the crushing disappointment in people and the hit to my own self-esteem. I swore off joining or running any organization ever again. There are plenty of other ways to help people, and posting here is one of them.

feralsurfer72 said:My mom asked about it today, and the answer she got was that it’s "super healthy"! I ended up picking up some silymarin, and while digging around online, I stumbled upon this study from the US National Library of Medicine: Multitargeted therapy of cancer by silymarin - US National Library of Medicine
National Institutes of Health link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2612997/
From what I can gather—using Google Translate to help me out—it doesn't seem harmful.

These findings suggest that by suppressing the cancer cells invasion through the specific inhibition of AP-1-dependent MMP-9 gene expression, silibinin represents a potential anti-metastatic agent. Together, the anti-invasive as well as anti- metastatic potential of silibinin could be of great value in the development of a potential cancer therapy.

Well, then there's nothing stopping us! 🙂

redcyclist7 said:I just faxed over the paperwork and now I'm just waiting for them to call me in for the Shunt scintigraphy. It’s pretty obvious your files are the reason they're moving so fast on this exam. Good luck! 🙂

Not really, at least not when it comes to the diagnosis. My doctor wants to figure out if we're dealing with actual crystals in my gallbladder or if it's just sludge; the ultrasound couldn't quite make the distinction, and given my symptoms, it's definitely on the table. Besides, he's basically waiting for another attack before he pulls the trigger on surgery... so 🤷 the doc did mention a follow-up in two months, along with an MRI and a new liver function test, so he wrote an internal referral and that's that.

feralsurfer72 said:The endoscopy and colonoscopy results came back clean—no signs of cancer there. It looks like the issue is strictly localized to the pancreas and liver, so it hasn't spread further. My dad is still waiting on an abdominal CT scan. For now, he isn't on any specific treatment other than his blood pressure meds and some Zaracet for the intense pain in his leg. He’s actually eating everything and was even out working in the garden yesterday.
I'm wondering if there's any point in getting him silymarin.

Silymarin helps stimulate liver cell regeneration, but I can't be certain if that might also inadvertently trigger growth in malignant cells. You absolutely have to talk to his doctor first!

Angela Wright said:I was at the hospital last week seeing a GI specialist—specifically a hepatologist—and they sent me off for an abdominal MRI. They want to see me back for a follow-up in two months. The problem is, my appointment for the MRI isn't until November. When I filled out the intake paperwork, I made sure to note that the doctor needs those results by April to decide if surgery is necessary or even what the plan should be, so I attached my medical history too. The receptionist told me the review board handles these things and they might move my slot up based on urgency, saying they'd notify me five days before a new date. I’m wondering if anyone has gone through this—what are the actual odds that they’ll actually bump my appointment up to meet that April deadline?

Turns out the odds were great. They called me yesterday to tell me the MRI is this Friday at 5 PM, which is perfectly timed for when the doctor needs the report. I can't tell if it's because the doctor is a total powerhouse with a huge reputation or if their triage system actually works, but it happened.

Kenneth Wilson6 said:We picked up a chair and ordered a mattress, but honestly, I didn't even think about renting equipment—so thanks again for the heads-up, that really helps. I'll start making calls first thing tomorrow.
There was zero point in asking for a multi-specialty consultation (at least, that’s what the clinic told us), so now we’re basically flying blind. My mom is getting worse by the day, and we’re just hitting a breaking point. For now, I’m managing to keep her moving and maintain her hygiene, but as for everything else... starting tomorrow, we'll have nurses coming in to handle the exercises, massages, and all the stuff I either don't know how to do or simply can't manage.
Right now, my only wish is to keep her comfortable and make sure she doesn't suffer through any unnecessary pain.

I am so sorry things are taking such a downward turn.😢
I really hope they at least have her dexamethasone doses stabilized.
Hang in there and stay strong. I can tell you right now, having medical professionals involved will be a massive weight off your shoulders. When I was going through this, I was completely on my own. A visiting nurse would stop by, but she could only stay for maybe 45 minutes a day; she was such a sweetheart that she’d often linger for over an hour just to help me out. Around here, you just don't get that kind of 24/7 home care, whether you're looking through Medicaid or paying out of pocket. If I didn't have a doctor in the family, I have no idea how I would have survived it all.

Every once in a while, it’s worth reminding everyone about this book by Dr. David Servan-Schreiber. Personally, I view it as a sort of Holy Grail for anyone lost in the maze of medical diagnoses and everything else that comes with them.

Kenneth Wilson6 said:I live in Chicago. Tomorrow we’re heading to an agency that provides 24/7 nursing care because my mom refuses to even hear the words "back to the hospital." We’ll see what the medical board tells us, and I’m going to ask about the edema—maybe that’s why they want a CT scan? Can you tell me what the best move is to prevent pressure sores?

If you're planning on nursing her at home, you absolutely need a hospital bed with an electric lift mechanism and an anti-decubitus air mattress with a built-in compressor. It works by constantly pumping air through the mattress to create a slight vibration, which stimulates microcirculation—that's the key to preventing pressure sores. We actually got our bed and mattress lent to us from a local assisted living facility. Since the director there was a neighbor of ours, she hooked us up pro bono, but normally facilities or rental agencies here charge about $50 a month to rent those setups. There might be similar programs where you are, so definitely look into it. Another option is reaching out to the Red Cross or local non-profits that handle elder care. I'm certain there are resources like that available if you do a little digging.
Let me be blunt: without a proper bed, don't even dream about providing adequate care. You will all end up completely broken, physically and mentally. I also highly recommend getting a commode chair with wheels to go along with the bed. That was a lifesaver for me. We could just put Mom in the chair, move the commode out of the way, and wheel her right over the toilet so she could go. It meant everything to her dignity. Afterward, we could easily wheel her into the bathroom to shower. Paired with the hospital bed, it’s a game-changer.
My mother was completely immobile for a year and a half. She passed away without a single pressure sore on her body—not one.

Kenneth Wilson6 said:I can't thank you enough, Angela Wright, for the response.
It’s become pretty clear to me that things have taken a turn for the worse since she isn't responding to mannitol or dexamethasone anymore. Now the real question is how we manage all of this at home. I'm working during the day (I have a two-month-old baby), and my brother watches her at night (his wife is eight months pregnant), so I'm really struggling to figure out what the most humane course of action is. Honestly, I feel like we're just prolonging her suffering because we don't have the medical expertise to know better.
We're heading back to the medical board meeting on Wednesday, so we'll see what the specialists say then.
Thanks again.

If this is edema caused by cerebrospinal fluid buildup, they can drain it mechanically. You need to have a serious talk with a neurosurgeon about it. They drill a tiny hole in the skull and use a syringe to release the fluid. The relief and improvement happen almost instantly. The only reason doctors hesitate to do it is usually due to practical or logistical constraints.
I'm not sure where exactly you're located, but based on how you write, it sounds like you might be in the Midwest or somewhere similar. I know there are hospice facilities available, and honestly, finding a spot in one might be the best move for both her and your whole family. Mom needs 24-hour care, and if you guys aren't equipped to provide that level of intensive nursing, hospice is the smartest option in the long run. Just a heads-up: this kind of state can last a long time. My own mother stayed completely immobile for over a year from the moment she started losing motor function until the very end.

goldencrane3 said:Dad has become incredibly aggressive and abrasive lately. It’s like all his worst traits have suddenly been dialed up to eleven, and honestly, it's becoming exhausting for us to deal with these outbursts. Have any of you dealt with this kind of behavior with glioblastoma? One doctor warned us this might happen—he was pretty blunt and frankly a bit rude about it, but he seems to have called it. Could this be caused by edema?

My mom didn't act out like that, but she definitely became mentally dull over time. I've seen cases where even benign tumors cause major personality shifts. I feel terrible for you; you're going to need a massive amount of strength to get through this. When things feel impossible, just try to remember that it isn't him talking—it's the demon of the disease speaking through him.😢
Look, the primary issue is the tumor itself. Edema develops as a side effect of the tumor growing, and as that swelling increases, it creates physical pressure on brain centers. That manifests as various neurological outbursts, most often affecting motor functions. As for the personality changes, that’s more about the tumor itself disrupting the brain chemistry and receptor activity because those specific centers are being hit.

Carol Smith27 said:We got the diagnosis on February 19th. We're hoping to head into the hospital this Friday, March 7th... everything is still pretty new and a bit overwhelming for us. He’s feeling great, eating well, and looks strong. But honestly, that bloody diarrhea is what's scaring us most. He actually had the chance to have the surgery done by another doctor, but he turned them down—he’s dead set on seeing Dr. Miller instead. We’ve read all the online reviews about him, but I’m wondering if anyone here has had actual personal experience with his work? Also, does anyone know how long the hospital recovery usually lasts after this kind of surgery and what the next steps look like?

Look, getting that surgery scheduled as soon as possible is really the priority here. If he had made the call to go under the knife earlier, any competent surgeon could probably have handled it just fine, because let's face it—these types of procedures have become incredibly routine these days. As for that bleeding, it might not even be directly tied to the cancer itself; it’s entirely possible he’s dealing with hemorrhoids that were aggravated by the diarrhea.
I don't have any personal history with Dr. Miller, but I haven't heard a single bad thing about him—if anything, the reputation is solid.
Recovery and the overall timeline are complete wildcards. It all hinges on the patient's baseline health, how invasive the procedure turns out to be (whether they need an ostomy, how much of the bowel is removed, whether peristalsis kicks back in), and general post-op stability, like how they handle anesthesia.
Once the surgery is wrapped up, there’s usually a window of about three weeks to a month—that's the standard timeframe—before the oncology treatments begin. During that gap, the pathology report on the removed tissue will come back. That report is the roadmap; it tells everyone exactly what type of colon cancer we're fighting, its grade, and the stage, which then dictates the entire follow-up treatment plan.
So, the immediate goal is the surgery. Let's just hope the cancer hasn't spread too far into metastases.

Carol Smith27 said:My dad was just diagnosed with colon cancer. He’s got one tumor right at the entrance of the colon and another much smaller one near the top. For two months now, he's been dealing with bloody stools. Has anyone here dealt with this or does anyone actually know what we're looking at? Is it even worth staying home and just waiting around for surgery?
We were told things won't change much for him over the next three weeks, but that the surgery absolutely has to happen within that window. Does anyone have experience with Dr. Leonard Patelj? Thanks in advance for any help.

So he was diagnosed three weeks ago? When did they schedule the procedure? As far as surgeons go, Patelj is top-tier. What specifically are you trying to find out?

Kenneth Wilson6 said:Hey everyone,
I really need to give a special shout-out to Angela Wright because her insights and experiences have been a massive help to me. My mom was diagnosed with Grade IV glioblastoma 16 months ago. During surgery, they managed to remove way more than the doctors originally anticipated, and she actually did quite well afterward—walking, talking, and functioning normally. We went through concurrent chemo and radiation, and at one point, the scheduled MRI showed that a portion of the cancer had completely vanished (the surgeons were genuinely surprised; she was still on her sixth cycle of Temodar back then). That was in May 2013. However, by September, the MRI started showing changes, which was confirmed again in early February (she hadn't had any therapy between those two scans besides Tegadol). Seven days ago, a medical board was supposed to decide if we should proceed with more chemotherapy, but she wasn't feeling up to it—it was the first time since the surgery that she struggled to walk and seemed sluggish. I'm powerless in this situation; they sent us home with instructions to give her two doses of Dex in the morning and one at night. Things are just going downhill from here. She’s lost function on her left side (they warned us this might happen when deciding on the surgery), and they started her on Mannitol, but nothing is helping—it's just getting worse. We head back to the medical board in three days, but honestly, I don't think they'll approve more chemo.
Is there any chance for a miracle? Can someone actually bounce back from this? I'm trying my best to stay level-headed and look for practical advice.
Sorry if this is a bit much, and thanks in advance for any thoughts or comments you can share.

Unfortunately, this sounds like a recurrence. It's likely the tumor is growing and creating new edema (swelling) that's pressing on critical areas, causing these neurological episodes. If the swelling is hitting parts of the brain already compromised by the tumor itself, that damage is permanent. You should take that MRI report straight to a neurosurgeon and ask if there's any possibility for something like Gamma Knife surgery.
Your mom definitely needs an increased dose of Dexamethasone. Ideally, she would be hospitalized so they could titrate the dosage—using Mannitol to bring the swelling down and then stabilizing her with a specific dose of Dex so she can eventually return home in a more stable condition.
Look, based on what I've seen personally, I can't offer any happy news here😢. With my own mother, it followed this exact pattern—the body just shuts down part by part. This disease is brutal, and this is how it plays out. Usually, everything being done is just an attempt to delay the inevitable for as long as possible.
Stay strong and try to keep your composure. Don't spiral into panic. As ugly as this illness is, you need to stay steady so you can handle everything that comes your way. Just take it one day at a time and deal with things as they evolve. Don't try to live in the future.