Support resources for families dealing with cancer and other serious illnesses

Angela Wright said:Regarding metastasis... My mother is entitled to receive Sutent. Nexavar has shown impressive efficacy in treating metastatic kidney cancer and is currently covered by the Social Security Administration for that specific indication. Don't let your doctor brush you off—insist on getting a straight answer regarding Sutent! This medication is incredibly expensive, and based on our experience working with advocacy groups, we've concluded that people are being misled when it comes to starting treatments involving high-cost drugs funded by hospital budgets.
My mother needs an urgent consultation with a neurosurgeon, backed by her MRI or CT scans, to determine if her brain tumor is even operable. Regardless of the surgical outcome, radiation therapy is definitely going to be necessary.

When it comes to Macrobiotics and noni, I can tell you from my mother's personal experience that it's nothing more than... It’s nothing but pure torture—a complete waste of money that ends up spiking your liver enzymes because of Noni.
Eating healthy isn't just a suggestion—it's a necessity. You really have to stick to a solid recommendation. The Mediterranean diet is overrated. People act like eating olive oil and feta makes them immortal, but honestly, it’s just another wellness trend being sold to us as some kind of magic bullet.That means you're looking at a diet heavy on fruits, vegetables, poultry, and fish.

Thanks... I honestly don't see how we can effectively insist on getting that medication.
Should I start with a urologist, an oncologist, or just head straight to my primary care physician?
Is Sutent taken orally?
My doctor mentioned chemo... so, are cytostatics actually administered in the form of chemotherapy?
My sister and I are insisting on a biopsy. It’s not just a formality—there is a massive difference between dealing with a brand-new primary tumor and managing something else entirely, especially once you start factoring in chemotherapy.

It’s pure irony—this person spent their entire life eating healthy, loading up on fish and leafy greens, sticking to light meals, and never once touched a cigarette or a drink...
Macrobiotics is my personal beacon of hope for her, intended to serve as a complement to conventional medicine.

I’m honestly feeling pretty overwhelmed right now. I'm 39 years old and about to have my third child, which means I just don't have the energy to dive in and help out like I used to. To make matters worse, I am the spitting image of my mother—it's like I was copy-pasted from her. It makes me wonder if I'll even be able to get this baby on their feet if I inherited all her genetic quirks.
Pure chaos in my soul.

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.

Thanks so much for all the input!

She’s still stuck in Urology, and despite everything, things are moving at a snail's pace.
I spent most of today digging into this, and honestly, I think expecting the hospital board to approve the exact same medication is a total illusion. I already know of three different people whose stories hit the news because, even with a diagnosis identical to my mom's, the medication was denied—simply because the monthly cost sits somewhere between $48,000 and $18333.
The oncologists signed off on it, but the board blocked it.
In reality, the drug was available to Račan—may he rest in peace—and who knows if anyone else actually got access.
We’re going to try every avenue, but...

It wasn't a brain stroke; I'm almost certain of that. The incident was mild, showing weak progression, but it's been constantly present.
I'm hoping they’ll perform a CT scan, though even that remains up in the air despite our constant insistence.
We still don't know for sure if we're dealing with metastases.

I am completely disgusted by their attitude toward the patient and her family. To have a doctor openly discuss metastases right in front of my mother, despite us explicitly begging him not to, is unacceptable. Then there's the condescension—insinuating we only secured a bed in Urology through "connections," or implying she isn't "their type" of patient... it's infuriating. Over the next few days, we’re going to try to get a meeting with a different, more senior physician to summarize the situation and decide on next steps. It is frankly pathetic that someone is supposed to be consulting with us while they're just grabbing coffee from a machine in the hallway. On top of that, the doctor doesn't even have the physical chest and abdominal CT scans with contrast (which allegedly showed metastasis) in his hands; apparently, he just took the radiologist's word for it verbally.

The real struggle is that I am powerless due to my own health issues, leaving my husband and the nurses to try and navigate this together during their breaks, which only makes an already impossible situation even harder.

First off, my apologies to the admins for posting in this thread; I couldn't find a single one that actually fits what I'm looking for.
I need someone with medical expertise to explain the concept of a sterile diet regarding leukemia. It doesn't need to be an essay—just a brief, comprehensive overview. Feel free to DM me if that's easier. Thanks.

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.

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.

Angela Wright said:Listen, dear.
My association just pulled off a major win through relentless lobbying and by having our members stand up and speak out about metastatic kidney cancer. We actually pressured the Secretary of Health to get the drug added to the coverage list. The folks who went on the news have already received their treatment, and in practice, it’s being prescribed. The real headache now involves patients who were previously stuck choosing between Nexavar and Sutent as their second-line option. Back then, insurance wouldn't cover either, so people had to pay out of pocket. Since Nexavar was slightly cheaper, a lot of patients opted for that one. Now that Sutent is finally on the approved list but Nexavar isn't, everyone wants to switch over to Sutent—but they can't because of rigid treatment protocols and sheer administrative stupidity.
If you want answers, demand everything in writing. Ask specifically about Sutent, and if they try to dodge the question or refuse to provide it, don't back down—insist they put in writing exactly which medical reasons are preventing them from giving it to you.
A CT scan is an emergency, period. This should have been handled days ago. Get her to the ER immediately and tell the neurologists she’s experiencing focal deficits—tell them you're terrified she'll suffer permanent damage and that there's a lesion on her brain. Once they hear that, they'll run an emergency CT right away. If there’s a tumor in the brain, you have to tackle it immediately. These things progress fast, regardless of whether she's showing any specific neurological deficits right now. The brain is the command center for every single organ in the body; if that growth hits a vital center, everything goes downhill fast.
I told you all to reach out if you hit a wall.
Don't get me wrong, but if you actually want to be of any real help, the family needs to step up, get organized, and stay informed. I realize you feel like you're at your most helpless right now, but everyone else needs to start pulling their weight and coordinating properly.

Once again, thanks—you really are a walking encyclopedia.
A CT scan was performed this morning.
She’s still hospitalized over in urology.
The info you shared about Sutent is incredibly valuable to me, gold.

We honestly couldn't pull off anything more organized than what we managed to put together here.
The family is fractured; my father passed away a long time ago, and my sister is struggling just to keep her head above water while raising a sick child. Despite all the hard work, they simply can't do any better than this.
The absolute worst part of this whole ordeal is the medical runaround. They just sent me home from the ER only to tell me, "Fine, come back in a week with your GI results, a bone scan, a renal ultrasound with color Doppler, and an endocrine evaluation." It's exhausting.
We went ahead and did the ultrasound with color Doppler privately—it was a bit of a process since we had to be so specific with the requests. We also managed to get a scintigraphy scheduled through a dear friend who pulled some serious strings at Mayo Clinic; I’m almost embarrassed to admit that, but they got us in the very first slot once the Isofarm arrived (and God knows how long you usually have to wait for those scans). They even lined up an endocrinologist for us.
The endocrinologist and the professor responsible for reading those skeletal scans were busy making excuses, claiming the tests hadn't been performed at Rebro yet—even though it’s their own patient! In the end, the family had to take matters into their own hands, pulling strings and using private connections just to get things sorted out at a different major hospital.
What can I even say? Even my urologist was stunned by how quickly we pulled this off—my husband and sister both felt like he actually expected us to fail. Honestly, I just sit here wondering where I would be right now if we lived out in some rural backwater where nothing ever gets resolved, still stuck waiting outside some tiny local clinic.

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!
😉

Angela Wright said:It’s a relief that everything worked out. If her diagnosis is indeed kidney cancer with metastasis, she is absolutely entitled to Sutent. If they try to deny her that treatment, demand a definitive explanation, in writing. If you run into any trouble at all, make sure to let me know so we can go after them with everything we've got!
😉

Seeing how selflessly you give yourself to complete strangers makes me wonder—why is it that the best people, people like you, always seem to face the worst? I honestly don't know if there will ever come a day when I stop believing in some kind of cosmic justice.
Thank you from the bottom of my heart.

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

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.

Is it actually true that you can't be prescribed Sutent if there are brain metastases present?

briskbison27 said:Is it actually true that you can't get Sutent if there are brain metastases present?

Regrettably, it’s the truth:

Sutent is indicated for first-line monotherapy in patients with metastatic clear cell renal cell carcinoma. The specific criteria for its use are quite rigid: an ECOG performance status of 0-1, no presence of CNS metastases, AST and ALT levels under three times the upper limit of normal, and creatinine clearance within twice the upper limit of normal. Treatment typically kicks off at 50 mg per day. After two cycles, a mandatory clinical and diagnostic review is required to evaluate both the tumor response and how well the patient is tolerating the drug. You can only continue treatment if there's a positive response—meaning complete remission, partial remission, or stable disease—until the disease progresses. In practice, this treatment is approved by the insurance provider upon the recommendation of the Hospital Formulary Committee, following a proposal from either an internist oncologist or a radiation oncology specialist.

slyseal28 said:unfortunately, it's the truth:

Sutent is prescribed as first-line monotherapy for metastatic clear cell renal cell carcinoma. Application criteria include an ECOG score of 0-1, absence of CNS metastases, AST and ALT levels under 3x the upper limit of normal, and creatinine clearance within 2x the upper limit of normal. Treatment starts at 50 mg/day. After two treatment cycles, a mandatory clinical and diagnostic evaluation is required to assess tumor response and treatment tolerance. Continued treatment is permitted only if there is a positive tumor response—meaning complete remission, partial remission, or stable disease—until the point of disease progression. This treatment is approved by the FDA upon recommendation from the Hospital Formulary Committee, following a proposal from either an internist oncologist or a radiation oncology specialist.

😢
Thanks.
The oncologist visited today.
We're waiting on the brain CT.
I'm terrified the results won't be good—she's dragging one leg, and there's this reflex where her hand moves whenever she moves her leg.
Does this mean if there are brain metastases, it's game over?
And everyone keeps acting surprised that after nine years, metastases have finally appeared; they act like it’s some stroke of bad luck.
Sometimes, life just hands you a losing hand.😢

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.

Angela Wright said:We’ll just have to wait and see. If there is a target on the brain, that’s what needs treating.
Unfortunately, once someone is diagnosed with cancer, there are zero guarantees that it won't come back.

The oncologist did her rounds yesterday, and Mom has an appointment at the clinic this Thursday at noon.
Without us even asking, they immediately suggested Sutent—but only if there aren't any metastases in the brain, so we're currently waiting on the CT scan results.

It is absolutely true that a recurrence is always a possibility for oncology patients; because of that, I am convinced that treating the disease at any stage requires a radical overhaul of all those lifestyle factors that might have triggered or fueled the illness.
I read somewhere once that genetics loads the gun, but everything else—the stress, the diet—is what actually pulls the trigger.

Thanks, everyone. I'll keep you posted.
We're praying for a good CT scan, though deep down, I'm not holding my breath.😢

Can someone please explain why a patient would be given 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 the purpose of those specific injections, and his response was basically telling us that we don't need to know.😕What kind of medical answer is that? Is a doctor actually allowed to dodge a direct question and refuse to provide an explanation like that?🤷

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.☕

Angela Wright said:I’ve never even heard of Dermazin injections.😕😕😕Look, I know Dermazin is a silver ion ointment designed to speed up healing for burns and wounds. But there's a catch: you can't use it on radiation burns. Period.
I think you’ve mixed up your terms regarding Dexamethasone. Dexamethasone is a corticosteroid. It's administered during radiation therapy specifically to prevent the edema that occurs as a side effect of the treatment.
Next time a doctor tries to brush you off by claiming you don't need to know certain details, shut that down immediately. Remind them that the Patient Bill of Rights exists for a reason. It’s very clear: a physician is legally obligated to provide patients with every single piece of information regarding their treatment. Period.☕

Thanks for the response. 🙂
It sounded off to me too when my mom mentioned Dermazin. It’s entirely possible she misheard my uncle, who was just passing along what the doctor said. I told her that when she heads to the doctor's office with Grandma tomorrow, she needs to confirm the exact name. She also needs to be firm—remind the doctor that he is obligated to provide a clear answer.

There are several metastases throughout the brain.
They’re seeing an oncologist right now.
I think this is the end of the road.
And it’s just plain unfair.
We buried one parent back in '93.
A niece had a tumor surgically removed in 2007.
Goddammit, life is just unjust.
Some people get nothing, while others lose everything.

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.