Posts by Angela Wright

Nancy Hernandez43 said:What happens if surgery isn't an option? If they have to fall back on chemo or radiation, is it actually possible to wipe out those malignant cells entirely? I’m asking as a total amateur here—I don't want to spend hours digging through medical journals trying to make sense of it all, so I figured it was safer to just ask you since you actually know what you're talking about.

Thanks, sending love to everyone fighting this fight.

Look, my take is that most cases are surgically removable, and if they can't cut it out, they'll pivot to radiation or chemo, assuming those treatments are available.

If none of that works, then the focus shifts to palliative care.

You should really take this question over to the Stonewall Jackson Foundation forum. They have specialists there who are far more qualified than I am.

briskbison27 said:There are several metastases in the brain.
She’s at the oncologist's office right now.
I think this is the end.
And it’s just not fair.
We buried one parent back in '93.
A niece had a tumor surgery in 2007.
Dammit, life is unfair.
Some people get nothing, while others get everything.

Look, this sucks, but I would never dream of saying it's over while you're standing in her shoes. Why are you jumping to conclusions before the facts are even in!?🙂
They are talking to the oncologist who will manage the next steps of her treatment. They need to determine if the targets are operable. Plus, brain metastases can be quite sensitive to radiation therapy.
Don't give up on her this easily—it really isn't fair to her. You actually have the power to influence that sense of injustice!

Listen, you have to accept certain realities, and that includes the fact that there are diseases that recur and follow these exact scenarios. Don't make things harder for yourself by making sweeping statements about how some people get nothing and others get everything. That has zero bearing on what is happening right now. Just remember how many years she lived after her diagnosis. Some people, unfortunately, pass away just months after being diagnosed. She has been blessed with quality time and a good life, and you need to keep fighting to secure more of it for her.
I understand your despair and frustration, but speaking from experience, those feelings are counterproductive if you actually want to help both her and yourself.

Try to focus on what matters: doing everything possible to address the situation without the hysteria and panic. In a state like that, you only end up making bad decisions.

Chloe Sullivan17 said:Can someone please explain why a patient would be getting Dermazin injections during radiation therapy?
My grandmother is battling cancer, and unfortunately, the metastases have already spread to her brain. Today, my family sat down with her doctor to ask about these injections, and he basically just brushed us off, telling us we don't need to know that kind of information.😕 What kind of medical response is that? Is a doctor actually allowed to just refuse to give an answer like that?🤷

I've never heard of anyone receiving Dermazin via injection.😕😕😕 As far as I know, Dermazin is a silver-ion ointment used to speed up the healing of burns and wounds, but it’s actually contraindicated for radiation burns.
It sounds to me like you might be mixing up the names with Dexamethasone. Dexamethasone is a corticosteroid often administered during radiation to help prevent the edema—that swelling—that occurs as a side effect of the treatment.
By the way, next time a doctor tries to tell you that you "don't need to know" something, remind him that the Patient Bill of Rights exists for a reason. It makes it very clear that doctors are legally obligated to provide patients with all relevant information regarding their treatment.☕

Look, there's always a chance that cyst just ruptured. Since you’ve dealt with endometriosis before, they probably just assumed it was another one of those. Clearly, they were wrong.
You need to go back for another scan soon, but make sure they use a color Doppler this time. And for heaven's sake, bring the images from your previous ultrasound so they can actually compare them.

briskbison27 said:😢
Thanks.
The oncologist did rounds today.
We're waiting on the brain CT scan results.
I’m terrified they won't come back clean—they've been dragging one leg, and there's this weird reflex where moving the leg triggers movement in the same arm.
If there are brain metastases, does that mean it's game over?
Everyone keeps acting surprised that after nine years, we're facing metastases again; they think it's just bad luck.
Sometimes life just hands you a losing hand.😢

It's too early to tell. If there is a target in the brain, we have to treat it.
Unfortunately, once someone gets a cancer diagnosis, there are absolutely no guarantees that it won't make a comeback.

briskbison27 said:Watching how selflessly you give yourself to total strangers makes me wonder—why is it that the best people, people like you, always seem to catch the worst breaks? I honestly don't know if there will ever be a day when I stop questioning whether life is just inherently unfair.
Thank you from the bottom of my heart.

P.S. Is Sutent prescribed by an oncologist or a urologist?

An oncologist prescribes Sutent.

It happens to everyone, really. It's just that people like me can't just move on with our lives after what we've been through, acting like nothing happened or pretending this won't happen to someone else down the road.

briskbison27 said:First off, thanks again—you really are a walking encyclopedia.
We finally got the CT scan done this morning.
She’s still hospitalized over in urology.
That info you shared about Sutent is absolute gold, thank you.

Honestly, we couldn't have organized this any better ourselves.
The family is pretty small; her father passed away a long time ago, and her sister is struggling enough just looking after her own sick kid, so they're doing everything they can.
The hardest part was actually dealing with the doctors—they basically sent her home from the ER and told us to come back in a week with a GFR, a bone scan, a renal ultrasound with color Doppler, and an endocrine consult.
We ended up paying out of pocket for the GFR and the ultrasound since those specific tests are such a pain to schedule. As for the bone scan—it’s embarrassing to admit, but we had to pull some strings through a dear friend at Mayo Clinic to get it done immediately once the tracer arrived, because everyone knows how long the waitlists are for scans. We managed to land the endocrinologist through that connection too.
Both the endocrinologist and the professor interpreting the bone scan kept insisting that the staff at Rebro hadn't even run these tests yet, despite her being their patient. It fell entirely on the family to take the initiative and use private connections to get things sorted at a different major medical center.
I don't know what to tell you; even the urologist was stunned by how fast we moved. Her sister and husband honestly thought we wouldn't be able to pull it off, but it makes me wonder where she would be right now if she were just some person from a rural town without the means to bypass all this red tape and stay stuck waiting outside a urology clinic.

It’s great that you managed to get all that sorted. If her diagnosis is kidney cancer with metastasis, she’s absolutely entitled to Sutent. If they try to deny her, demand a formal, written reason. If they give you any grief, let me know immediately so we can go after them with everything we've got!
😉

Walter Mitchell said:First off, my apologies to the mods for jumping into this thread; I just couldn't find a single discussion elsewhere that actually fits what I'm looking for.
I'm hoping someone with actual medical expertise can break down what "sterile diet" really means when you're dealing with leukemia. It doesn't need to be a dissertation—just a quick, comprehensive overview. Feel free to shoot me a DM if that's easier. Thanks.

Give HULL a call. They'll point you in the right direction.

briskbison27 said:Thanks so much for all the answers!

She’s still stuck in Urology, and despite everything, things are moving at a snail's pace.
I’ve been doing a lot of digging today, and honestly, I think believing that a hospital board will just approve the same medication is a total illusion. I already know three people whose stories ended up in the news where the medication wasn't approved—even though they had the exact same diagnosis as my mom—simply because the monthly cost sits somewhere between $48,000 and $18333.
The oncologists prescribed it, but the board shot it down.
In reality, the drug was available to Račan, God rest his soul, and who knows if anyone else actually gets it.
We’re going to try everything, but...

It wasn't a brainstem issue; I'm almost certain. The neurological deficit is mild, the progression seems slow, but it’s constantly there.
I’m hoping they’ll perform a CT scan, but even that is hanging in the air despite us practically begging for it.
We still don't even know for sure if there are metastases.

I am completely disgusted by their attitude toward the patient and her family. It’s like they have no respect; one doctor actually sat there and spoke openly about metastases right in front of Mom, even after we explicitly asked him not to mention it. They kept insisting we only got a bed in Urology because of "connections," and acting like she isn't even a "real" patient to them... Over the next few days, we’re going to try to get to a different, more senior doctor to summarize everything and decide our next steps. Because frankly, it is ridiculous that someone is having these discussions with us in passing in the hallway while they grab a coffee from the machine. On top of that, the doctor doesn't even have the actual CT results for the chest and abdomen (which allegedly showed metastasis) in his hands; he apparently just heard it verbally from the radiologist.

The big problem is that I am powerless right now due to my own condition, and the nurses are trying to help resolve things alongside my husband after their shifts, which just makes everything harder.

Honey,
my association just managed to force the Secretary of Health to put this drug on the approved list through intense lobbying and having members with metastatic kidney cancer step forward. People who went public in the media actually received their medication, and it is being prescribed in practice now. The issue lies with those who previously had to choose between Nexavar, which is also used for this indication, and Sutent. Back then, patients had to pay out of pocket for both, and since Nexavar was slightly cheaper, a lot of people opted for that. Now, Sutent is on the list and Nexavar isn't, but people want to switch to Sutent, and they can't because of rigid treatment protocols and stupid bureaucracy.
Get everything in writing. Ask specifically for Sutent, and if they refuse to give it to her, insist that they put in writing exactly what medical reasons they have for denying it.
A CT scan is, I repeat, an urgent matter that should have been handled two days ago. Take her to the emergency neurology department and tell them she has a neurological deficit, that you are terrified she might fall or injure herself, and that there is a target on the brain. They will run an emergency CT immediately! If there is a target on the brain, it has to be dealt with right away because the tumor advances fast, regardless of whether her symptoms seem mild right now. The brain controls every single organ; if it hits a vital center, everything goes south instantly.
That is why I told you to contact me if you get stuck.
p.s. Don't take this the wrong way, but the family needs to organize itself and get better informed if you actually want to help her properly. I understand you are the most incapacitated person right now, but everyone else needs to step up and coordinate.

briskbison27 said:Thanks... but how exactly do we push for this specific medication?
Do we go through a urologist, an oncologist, or just a primary care doctor...?
Is Sutent taken orally?
The doctor mentioned chemo... so are cytostatics administered via standard chemotherapy IVs?
My sister and I are going to insist on a tumor biopsy; it really matters whether this is a new primary tumor or a metastasis if they’re planning to start chemo.

It’s pure irony—she’s eaten healthy her entire life, tons of fish, leafy greens, light meals, never even touched a cigarette or a drink....
Macrobiotics is my personal hope for her, as a supplement to traditional medicine.

It’s just devastating, especially since I’m right here in the middle of my third pregnancy at 39, unable to step up and help the way I want to. Not to mention I’m basically a carbon copy of my mom in looks and everything else, so I can’t help but wonder if I’ll even have the strength to raise this baby if our genetics didn't skip me.
My soul is in chaos.

Sutent is an oral cytostatic, so you could say it's a form of chemotherapy, except it comes in pill form. That’s likely what the doctor meant. It can only be prescribed by a physician following a diagnosis of metastatic renal carcinoma, and the dosage must be strictly managed under constant medical supervision. Whether this is a brand-new tumor or a secondary site from a different primary cancer is something only an oncologist can determine. Personally, based on how typical this presents, I suspect we're looking at metastases from kidney cancer. You need to demand a sit-down with the specialist to discuss the roadmap and let them know you're aware that Sutent is a standard treatment for metastatic renal carcinoma here in the US. Get some straight answers.
Also, if you find yourself getting vague responses or running into other hurdles, you absolutely should gather all her medical records and seek a second opinion.

I get that you're desperate to do *something* for her, but please don't force her into a strict Macrobiotics diet just to soothe your own anxiety. Your mother's situation is incredibly complex, and putting her body through the stress of a sudden, radical dietary overhaul will only cause more suffering.
She needs to address those brain metastases immediately. There isn't a single day to waste! This is why getting a brain CT is non-negotiable. It honestly baffles me that they haven't performed one yet after noticing neurological deficits. Those symptoms could just as easily be a stroke. You can't know for sure without a CT scan!

As for cancer and genetics, I've said before: we all carry cancer cells inside us constantly. What triggers the process is likely a perfect storm of complex circumstances. It just happens. Don't beat yourself up over it, because there isn't an answer out there that's going to give you peace of mind. You have to stay focused on your baby; being overly distressed is already taking a toll on them.

briskbison27 said:I need some help here!

My mom had kidney cancer surgery back in 2001.
For the last few months, she’s been feeling off, but she kept fighting going to see the doctor.
Now: there's a mass on her remaining kidney (they aren't sure if it's a new primary tumor or a metastasis), plus metastases in her lungs and likely in her brain (she's having neurological issues in one arm and leg).
Subjectively, she isn't in pain and feels relatively okay.
The attending physician is young and seems totally indifferent; we're planning to talk to a more senior doctor next week.
She’ll likely be discharged soon after some tests—possibly a brain CT (though I don't really see the point?), and a biopsy of the kidney mass to figure out if it's primary or secondary.

A few questions for anyone who can help:

1. Should we accept oncological treatment? (I'm a layman, but from what I understand, chemo isn't very effective for kidney cancer).

2. Should we insist on cytostatics (which are supposedly the only things somewhat effective)?

3. Should we refuse everything and switch her to an exclusively Macrobiotics diet while she's still relatively strong, perhaps adding some Noni juice?

Keep in mind she's 64 and diabetic.
Psychologically, she has the kind of temperament that would actually stick to an alternative diet.

With metastases present, mom is entitled to Sutent, which has shown excellent efficacy for metastatic kidney carcinoma and is covered by the Social Security Administration for this indication. Demand a straight answer from the doctors regarding Sutent! It's an expensive drug, and based on what we've seen at patient advocacy groups, people often get brushed off when they need to start high-cost treatments that are funded through hospital budgets.
Mom needs to see a neurosurgeon immediately with her MRI or CT results to determine if the brain tumor is operable. Regardless, she's going to need radiation for the brain.

Regarding Macrobiotics and Noni, speaking from my own mother's experience, it's nothing but suffering, a waste of money, and a way to spike liver enzymes (specifically with Noni).
She just needs to eat healthy. The recommendation is a Mediterranean diet, which means plenty of fruits, vegetables, poultry, and fish.

slyowl10 said:The tumor shrunk from 2.5 cm down to 1.7 cm, but there are metastases in the lymph nodes, which is why the pain is so intense. We're currently waiting on the tumor marker results. Can anyone explain what it actually means when the disease hits the lymph nodes?

Think of the lymphatic system as a drainage network. It starts with interstitial fluid that gets filtered into the lymphatic vessels. Once that fluid—lymph—enters the vessels, it travels through at least one lymph node before finally dumping back into the left or right subclavian vein to mix with the bloodstream. In this case, the cancer has spread to those nodes, creating metastases. This isn't unusual; since both blood and lymph circulate throughout the body, malignant cells can hitch a ride and set up shop in different areas. That’s exactly why doctors don't just rely on radiation for the primary site; they use chemotherapy to hunt down those stray cells circulating in the blood.
You really need to find out if surgical removal of those affected lymph nodes is an option.

slyowl10 said:Is there a chance the metastases have spread to other organs, causing all this pain?

Unfortunately, it's 😢
But you really need to hold off until the lab results come back and you get a professional opinion from the doctor.

slyowl10 said:My father is battling pancreatic cancer with liver metastases, and things aren't looking good. For the last two weeks, he’s been dealing with these brutal, aggressive pains in his lower abdomen. He went in for chemo yesterday, and his oncologist told him he needs to see a surgeon immediately. Right now, he's at the hospital getting run through every test imaginable. Honestly, I feel like I’m losing my mind waiting for these results to come back and hearing what the verdict is... Doctors are actually wondering if it's a gallstone?! How dangerous is that given everything else he's fighting?
By the way, I don't live in the same state as my parents, and it absolutely breaks my heart that I can't be there to help him directly...
I fly home every single weekend to try and lift his spirits, but watching him go through these pain episodes is the hardest part of all...

I find it hard to buy the gallstone theory; if it were just a stone, they likely would have caught it by now. It takes a significant amount of time for a stone to grow large enough to trigger an attack like that.
I can't say for certain how critical this is right this second, but in my opinion, if there really is a stone causing these spasms, leaving it untreated is far more dangerous than addressing it.

Jonathan Sanchez3 said:I called a private medical transport service to check prices, like from the Thorn area over to the Rib hospital......$87

Our doctor isn't incompetent at all—she’s actually excellent. My dad has been essentially living on painkillers ever since they found bone metastases. Right now, his dose is at 125 mg over the last few days, and he’s taking Ketorol too. He was given Sevredol, but it made him feel terrible; he couldn't breathe and his lungs felt heavy. Yesterday, the doctor even prescribed 600 mg of Ibuprofen, but even after taking that, the pain didn't budge. We ended up throwing him in the car and rushing him to the ER at the Rib, where they just left him sitting in a wheelchair in some little side room in agony for a good hour. Finally, they gave him two doses of morphine and Tramal. Even then, he said the pain wasn't letting up, so when we got home, I gave him more Ibuprofen and Ketorol. That seemed to help. In fact, today he can actually walk, whereas yesterday morning he couldn't even move in bed. We went to see the oncologist today to try to get him admitted for inpatient care and palliative radiation, but his regular oncologist isn't there, and the covering doctor was just dismissive. They told us to wait until Monday to see his primary doctor, but apparently, she doesn't return until June 1st, so we’re just stuck waiting until she gets back.
It feels like yesterday's infusion and the morphine are working for now, but once that wears off tomorrow or the day after, we'll be right back in this nightmare... I honestly don't know how to help him through all of this.

Try giving him Pharmacist when the pain hits next. A head nurse over at Jordan told me that it covers a specific "spectrum" of pain that these other analgesics and things like morphine just don't touch. She says people are always baffled when they take Pharmacist and the pain vanishes instantly, especially after they've tried everything else under the sun without any relief.

Jonathan Sanchez3 said:Hey everyone.

So, my dad has bone metastases, and lately, the pain has been absolutely brutal. Our doctor is telling us we need to get him to the hospital, but here’s the catch: how on earth are we supposed to transport someone who can't even move from a lying position using just our own car? The local emergency services basically told us they could send someone over to administer an injection, but honestly, that's way too weak to touch the kind of pain he's in right now. Does anyone know if there's such a thing as medical transport or some kind of ambulance service where you don't have to schedule everything two days in advance? We need someone who can transport him while he's lying down, or at least put him in a stretcher so he can be moved safely. My mom mentioned hearing about some kind of non-profit organization or community group that helps out in situations exactly like this, but she can't quite remember the name. Does anyone have any leads?

Thanks.

I’m not entirely sure if the doctor can actually authorize medical transport without a specialist referral on file first. Usually, you have to get that paperwork sorted the day before you head to the hospital. Tomorrow morning, you’ll need to be on the phone by 6:00 AM sharp—you call the number the doctor provided, and they’ll give you the specific pickup location for the patient. If you’re trying to handle this today, just call emergency services again and tell them your dad needs something for the pain. They call them in until they’re practically unconscious every single time his pain flares up. If the system thinks it’s somehow cheaper to play these games rather than just admitting someone needs inpatient care and actually fixing the problem, then they are flushing money down the drain!😠 Make sure you dial 911 every single time. Those calls are recorded, and if they give you the runaround or refuse to help, you’ll have the actual evidence you need to file a lawsuit or hand over a smoking gun to the local news stations.
Go ask that incompetent general practitioner if they can actually manage to issue a referral to an anesthesiologist—specifically to the Pain Center. At the very least, they should be able to prescribe something to take the edge off the pain.
CThe Pain Center at the Mayo Clinic.
12 Kishpatić Street (Mayo Clinic), US Zip Code 10000
Pain Clinic / 1st Floor of the new Polyclinic, Room 226
Host: Ines Adanić-Mikloška, MD, Anesthesiology Specialist
Hours of operation: Tuesday through Friday, 8:00 AM to 4:00 PM.
Phone: 212-555-0198 212-555-0198
I don't have any info on whether there are actually any organizations out there that handle medical transport for patients who need to be moved in a lying position to the hospital.
If none of those options actually work, you need to get one of you in front of an anesthesiologist or an oncologist. Sit them down, lay out exactly what’s happening, and practically beg them to add a recommendation for Durogesic patches to your medical records. You can always scale the dosage up gradually as the pain intensity shifts.

P.S. My primary care doctor is completely incompetent and totally out of her mind. 😳She needs to actually step up and propose a solution. As an activist for cancer patient advocacy groups, I feel like she should have already anticipated this and brought it to the table herself. It is nothing short of inhumane to just leave someone in this position to fend for themselves.😠😠😠

Kevin Garcia12 said:Nene, you totally missed my point—I’m not saying I don't get why your post was such a disaster, that part is crystal clear to me...

Oh, I hear you loud and clear... but hey, what can you do when you're dealing with someone that clueless?☕ Believe it or not, we constantly get hit with these incredibly trivial questions. Instead of just taking care of business immediately, people will spend the entire day blowing up the emergency room line just because they want an injection for their dad every time he feels a little off. They'll drive him halfway across the state just to waste time and money that the healthcare system is already starving for. If this had been handled properly from the jump, the guy would be sitting comfortably at home right now without any pain, not to mention how much money would have stayed out of the system's drain.
Total idiot.😳

Kevin Garcia12 said:I honestly don't get what the issue is 🤷 in this specific situation—every general hospital should basically have a dedicated "pain clinic" staffed with an anesthesiologist who manages chronic pain therapies. If a patient is immobile, their primary care physician just needs to write a referral to that specific clinic and request an ambulance for that day (this really needs to be sorted out at least 3 or 4 days in advance so the drivers can actually organize their schedules properly and we avoid all those headaches with executing the orders)... you can even provide a rough arrival time to the local EMS or medical transport service, and then the ambulance shows up right on time to take the patient to see the anesthesiologist, who then determines the appropriate analgesia and makes sure they get back home safely...

Every single primary care office should know how to handle this without breaking a sweat; I mean, even I know the protocol, and I don't even work in general practice...

As far as the emergency services are concerned, they aren't wrong, except for the fact that aside from providing immediate relief during a crisis, they shouldn't really be handling this long-term. According to current laws, palliative medicine is part of primary care, which means it should be supervised and carried out either by specialized teams (if we even have those available here in the States) or by the patient's own primary care doctor who is responsible for them...

The real problem is that some people with medical degrees are straight-up morons.

An incompetent primary care doctor should have explained this and suggested it to the family themselves, but no—instead, they just made some "smart" observation and told them to take their dad to the hospital. For God's sake, medicine is so easy I could practically practice it myself😳. Just because you and I have some experience doesn't mean everyone else out there knows the drill.

Babyface said:Hey everyone

My dad has bone metastases, and lately, the pain has been unbearable. Our doctor told us we need to get him to the hospital, but we’re stuck—how are you supposed to transport someone who can't even get out of bed using just a regular car? The emergency services offered to send someone over to give him a painkiller injection, but that’s just a drop in the bucket for what he’s going through. Does anyone know if there's medical transport or something similar available on short notice? We can't wait two days to coordinate something. We need someone who can move him while he's lying down, or at least put him in a stretcher to get him moved. My mom mentioned hearing about some kind of association or nonprofit that helps in these exact situations, but she couldn't remember the name... does anyone know anything about this?

Thanks

Here we go. I’ve quoted a plea that perfectly captures a total lack of competence, pure inertia, and—if I dare say—the sheer mental deficiency of a certain primary care physician. This is a textbook case of that specific "phenomenon."☕
In my line of work, I constantly run into people whose GPs are utterly incapable of providing even the most basic information regarding, say, specialized clinics that actually handle these kinds of issues.
It’s pathetic, really. And it isn't a matter of budget constraints or lack of resources; it is purely a matter of individual incompetence.👎👎👎