Posts by briskbison27

I don't know..
that whole theory about bacteria seems like the most realistic scenario to me.

I’m reporting this, and honestly, I’m not feeling it either.
It’s especially bad when my husband is nearby; they just swarm him.
His skin tends to be much more damp than mine.
I barely sweat, and my skin is naturally quite dry.
As for health and getting bitten—my mother was quite sickly during her life, and mosquitoes used to go absolutely crazy for her.😕

The heartburn and the sheer clumsiness—basically just feeling sluggish because of this belly—is what gets to me most.
Normally, I’m out there running around like a superhero, but right now, I feel more like a slow-moving elephant.

But if we're being honest, the absolute worst part of this pregnancy is the nausea and vomiting.

That's, you know, the ultimate gut punch.

She was prescribed Dexamethasone to help reduce the brain swelling.
She thinks it's Sutent. Honestly, she just isn't someone who can handle the full truth.
Regarding the brain metastases, we've reached an agreement with the oncologist that we’ll take until the next appointment to decide whether or not to proceed with radiation.
Those kidney tumor metastases aren't going anywhere; they're just going to shrink.
Sutent is off the table because it causes the blood vessels at the tumor site to rupture and bleed, which is a risk we absolutely cannot take.
Is there anything else we can do?
She came home from the hospital in a terrible mental state, but she's doing better now.

If we tell her about the brain situation and she starts radiation, that’s essentially the beginning of the end.

I'm at a loss for what comes next.

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.

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.😢

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.😢

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

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?

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.

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.

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.

I need some help here, please!

My mother had surgery for kidney cancer back in 2001.
For the last few months, she hasn't been feeling well, though she kept fighting us on seeing a doctor.
The current situation: there's a mass on her remaining kidney—they aren't sure yet if it's a new primary tumor or a metastasis—plus there are metastases in her lungs and likely in her brain, given the neurological issues she's having with one arm and leg.
Subjectively, she isn't in pain and seems to be doing relatively well.
The attending physician is young and seems completely disinterested; we’re planning to push for a consultation with a more senior doctor instead.
It looks like she'll be discharged from the hospital soon, pending further tests like a brain CT (though I honestly don't see the point?) and a biopsy of the kidney mass to determine if it's primary or secondary.

I have a few questions, if anyone can offer some guidance:

1. Should we agree to oncological treatment? (I'm a layman, but my understanding is that chemotherapy isn't very effective for kidney cancer.)

2. Should we insist on cytostatics, which are supposedly the only somewhat effective option?

3. Or should we refuse everything and switch her to an exclusively Macrobiotics diet while she still has the strength, perhaps supplemented with Noni juice?

Keep in mind she is 64 years old and has diabetes.
Psychologically, she has the temperament to actually stick to an alternative diet.

Of course a test can come back positive when there’s absolutely no pregnancy involved:

if you were on hormone therapy and ended up with a false alarm
if you're dealing with a chemical pregnancy
if it's an ectopic pregnancy
hCG acts as a tumor marker—God forbid, but that happens sometimes too

She mentioned earlier that the doctors at Mayo Clinic couldn't figure out why her hCG was positive despite not being pregnant. Well, look at Marko Strahija (the swimmer)—he tested positive on a doping test, but the reality was he actually had testicular cancer.

Your situation is genuinely baffling; having a minimal blood level while the urine test stays positive is weird, since those usually only trigger at much higher concentrations.

Carol Thomas52 said:Exactly! Thanks, 🙂

And what do I get out of this?
You’ll get a kick in the teeth..🙂
Nooo... even better—you'll be too slow to dodge it.😁

Carol Thomas52 said:My cycle consistently runs longer than the standard 28 days—I’m looking at anywhere from 28 to 33. It feels like I'm constantly waiting for something that's overdue...

You aren't pregnant, so rest easy.
There will come a day when you'll be praying for the exact opposite.👍

Carol Thomas52 said:I need some serious advice here, please!!!!!
So, my boyfriend finished inside me on January 31st, but my period actually started back on January 27th—which would have been day five of my cycle.
What are the actual odds of me being pregnant right now???
It’s been about 15 days since that potential conception window. Is it even worth using a pregnancy test at this stage, or will it just be a waste of money?!!

Thanks

It's always possible, obviously, though the odds are slim—if your cycles are regular and follow a predictable pattern, I wouldn't call them significant.👍
We've all dealt with these same anxieties at some point, so try not to worry too much.
If you really want certainty, get a blood test for beta HCG; that's the only way to know for sure this early.
The hormone doesn't show up in urine until later.

Elizabeth Gonzalez55 said:Hi everyone,

I wanted to share a quick update—for those following our fight against melanoma, or if anyone ever wonders if Stage IV can actually be fought:

One year after the diagnosis, the scans are still clear. Our next check-up isn't for another six months. So far, so good. We’re feeling hopeful and satisfied, but the battle continues!

I read this thread regularly and am sending positive energy to all of you. Hang in there!

Julia🎉
I'm rarely on here, but whenever I drop in, I look for news on how you two (is it three now?) are doing. Sending big kisses and nothing but good vibes!🙂

Elizabeth Gonzalez55 said:As for whether everything mentioned above actually worked, we won't know for sure until the follow-up PET/CT scan at the beginning of February. He's feeling pretty confident that the results will be positive. :-)

What else is there to say? It comes down to sheer strength, willpower, energy, and love.
Hang in there.

Angela Wright said:Honestly, I am so happy I could cry!

B R A V O!!!!
Have you ever considered channeling all that incredible energy and enthusiasm of yours into a permanent fight for life and justice?
Because, frankly, you’re a natural at it.