#1601 ·
Amanda Murphy62 said:If that experienced doctor actually said that, he belongs in a psych ward... quit talking nonsense.
Why😕? It worked for some people, but you still need medication therapy to back it up.
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Support resources for families dealing with cancer and other serious illnesses
Support resources for families dealing with cancer and other serious illnesses
Started by casualpanther1 · · 👁 35 views · 1.9K replies
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Why😕? It worked for some people, but you still need medication therapy to back it up.
#1602 ·
Susan Ruiz76 said:Dear neonpanther12, look, I honestly don't have a clue—at least not beyond what actually bit me and what I took the time to dig into thoroughly. My husband was on Tarcev—another incredibly pricey medication—it sits around $6.75 (cheaper than Sutent), and we kept buying it until the Secretary of Health stepped in and declared that anyone who truly needs these high-cost drugs has a right to them. Well, we ended up handing the hospital director the actual findings from an oncology board meeting where they stated, quite literally, "...continue Tarcev..." It’s simple, really. When a whole panel of specialists agrees that continuing with Tarcev is the path forward, our hospital's board didn't have much of a choice. They had zero grounds to deny us, and within 24 hours, the medicine was waiting for us at the hospital pharmacy. Of course, we handed over every scrap of paperwork and filled out all the necessary forms—but that’s minor stuff. The real nightmare wasn't the bureaucracy; it was counting the massive amounts of money we were burning through for so long.😠
So, what should you and your family do? Demand that the doctor puts it in writing—specifically stating that Sutent is the recommended treatment. If that recommendation is there, nobody can tell you no.
Secondly—when you mention the big hospital and that "expensive machine," you're likely talking about a PET scan. I know plenty of people who received that scan through insurance, and frankly, they needed it. And they weren't stuck on a waiting list forever either. We also asked the oncologist if it made sense for us to go ahead and pay for that scan ourselves; however, he told us—and we trust his word—that in my husband's specific case, it wouldn't change anything. He has a clearly diagnosed primary tumor being treated according to standard medical protocols that yield the best results. If you spend a little time reading the posts here, you'll see that PET scan results aren't always crystal clear, nor do they always provide the most definitive answers.
Good luck!🙂
Thanks so much for the advice. Also, if anyone knows, my mom needs to start taking Sutent soon—what kind of side effects should we expect? Wishing you ALL THE BEST.🙂
#1603 ·
Amanda Murphy62 said:If that doctor actually said that, they belong in an asylum... quit talking nonsense..
On top of everything else he was doing for treatment, my husband was eating a few slices of bacon every single day. People say that stuff is actually good for your lungs. We didn't lose anything by doing it. Honestly, maybe it even helped him..
#1604 ·
casualrider21 said:Yeah, we paid full price because we went private at Vinogradska Hospital. Since we aren't covered by Medicare and didn't have the patience to deal with the local commission approvals here, we just bit the bullet.
It’s actually a decent tool. People say it’s super reliable—one scan and you’ve got the whole picture. It shows you every single change and maps out exactly where everything is sitting.
Before that, we went through a ton of different tests, and the PET CT basically confirmed the same stuff, though unfortunately, it even "added" a few more spots for metastases.
Try to get a referral for a PET CT if you can. It saves you from doing a million little individual scans.
Hang in there!
My husband ended up getting his PET scan done at Medkol Clinic over at Vinogradska Hospital using a referral. He didn't pay a dime. Personally, I can't tell you how reliable it is, though, because the report didn't even mention the primary disease he was being scanned for—instead, they were describing his vocal cords, like, clusters on the vocal cords. The doctor from Jordan told us that was just damage to the vocal cords from the bronchoscopy. So, the PET scan told us absolutely nothing about the actual illness.
Next week, my husband has a follow-up appointment at Jordan. We'll see what the doctor has to say then. Since he's been dealing with pain in his hips and pelvis, he had an X-ray. The X-ray results say he needs a scintigraphy. I actually suggested that to his doctor a while back because of the bone pain, but he wouldn't listen. He thinks it's all in his head!! But it's real physical pain—we can only take the edge off slightly with a Durogestic 50 patch and some Tramadol or Ibuprofen... We'll just have to see what comes of this next visit.
#1605 ·
Lisa White54 said:My husband went for a PET scan at the Medkol Clinic located within Vinogradska Hospital, all covered by Medicare. He didn't pay a dime. Personally, I can't say how reliable the results were, because the report didn't even address the primary illness he was being scanned for; instead, they focused entirely on his vocal cords—specifically, some nodules. The doctor from Jordan said this was likely just damage to the vocal cords caused by the bronchoscopy. So, we learned absolutely nothing about the actual disease from the PET scan.
Next week, my husband has a follow-up appointment in Jordan. We'll see what the doctor has to say then. Since he’s been dealing with hip and pelvic pain, he had an X-ray. The X-ray report suggests he needs a bone scan. I actually suggested a bone scan to his doctor a while ago because of the bone pain, but he wouldn't listen. He thinks it's all psychological!! But it's physical pain, which only gets slightly better with a Durogestic 50 patch combined with Tramal or Ibuprofen... We'll see what he says now.
Lisa, don't let them brush you off regarding the bone scan. Start looking right now for the nearest facility where you can get it done, because the wait times are incredibly long. In Indianapolis, we were met with a lot of understanding, and once the oncologist recommended the test, 👍 we managed to get it done within eight days. If you explain your husband's diagnosis clearly and make a sincere plea, they usually help you out—especially if you mention he needs it for a follow-up next week. Good luck!🙂
#1606 ·
Amanda Murphy62 said:If that experienced doctor actually said that... honestly, someone needs to check them—maybe they belong in a psych ward if that's their take... don't be so intense...
But why, for heaven's sake?!
I mean, everyone keeps talking about how helpful this is for blood counts—specifically for the white blood cell levels...
It's just that doctors usually don't recommend anything at all—they just tell you everything will fix itself naturally...
Personally, I think getting some kind of advice like that is way better than being left with nothing at all ☕
And I really do think that the steak (without onions!) helped my mom improve her blood work 🤷
Good luck to everyone with your follow-ups, the tests, and the whole fight!!!!! 🙏
#1607 ·
..White blood cell counts can spike during chemo exclusively due to non-specific triggers if there's an actual medical indication for it, and that’s entirely up to the doctor to decide... everything else is just hearsay. There isn't some magic machine that jumpstarts bone marrow, and no specific food is going to force your body to crank out extra leukocytes or platelets on demand. It’s unfortunate, but that's the reality. Doctors are right when they say the blood counts will recover on their own; that’s just how the natural cycle of chemotherapy works. The treatment suppresses the counts, then after a while, they bounce back. As for those people preaching miracle cures, I'd suggest they spend a day shadowing a hematology department at a place like Mayo Clinic. If they actually do, maybe they should try asking the hematologists who are already exhausted from hearing about "miracle drinks" every single day.
#1608 ·
Maria Fox said:I mean, seriously, what gives?!
Everyone’s out here claiming this stuff is great for your blood counts—specifically the white cell count
But you know how doctors are. They won't suggest anything; they just sit there telling you everything will magically fix itself
If you ask me, I'd rather take that kind of blunt advice than be left totally hanging with nothing at all ☕
And honestly, I'm pretty sure my mom eating bacon (without onions) actually helped bump up her blood work. 🤷
Good luck to everyone dealing with checkups, scans, and the whole fight!!!!! 🙏
The sad truth is, both chemo and greasy bacon really tank your body's pH levels, which isn't exactly helping the healing process.
#1609 ·
Man, so many people, so many different stories. Honestly, I'll take all the experiences and advice I can get.
My dad's first round of chemo absolutely trashed his white blood cell count. He barely made it through.
I truly believe "old school" remedies actually work. People have been drinking beet juice since forever just to boost their blood counts—it’s a thing for a reason, right? Going natural and safe is going to show results. Food is everything. 😉
Look, it's true that white blood cells eventually bounce back on their own, but that takes time, and waiting means delaying the next treatment... Speaking from experience, my dad could barely handle the second round because even though his counts went up a tiny bit after the first one, they were still basically bottomed out.
So we pulled out all the stops, started doing everything possible, and now his blood counts are fine—treatments are staying right on schedule.😉
And don't even get me started on the doctors. They pretty much write you off immediately, so what's the point of even talking to them? They brush off any alternative approach, let alone actually recommending one or letting you consult with them about it.
I mean, whatever, they just learned everything from textbooks... there's no room for stuff like bacon or beets in their world...😁 😉
Anyway, hang in there, everyone!
Later, casualrider21!
My dad's first round of chemo absolutely trashed his white blood cell count. He barely made it through.
I truly believe "old school" remedies actually work. People have been drinking beet juice since forever just to boost their blood counts—it’s a thing for a reason, right? Going natural and safe is going to show results. Food is everything. 😉
Look, it's true that white blood cells eventually bounce back on their own, but that takes time, and waiting means delaying the next treatment... Speaking from experience, my dad could barely handle the second round because even though his counts went up a tiny bit after the first one, they were still basically bottomed out.
So we pulled out all the stops, started doing everything possible, and now his blood counts are fine—treatments are staying right on schedule.😉
And don't even get me started on the doctors. They pretty much write you off immediately, so what's the point of even talking to them? They brush off any alternative approach, let alone actually recommending one or letting you consult with them about it.
I mean, whatever, they just learned everything from textbooks... there's no room for stuff like bacon or beets in their world...😁 😉
Anyway, hang in there, everyone!
Later, casualrider21!
#1610 ·
I’m honestly glad someone finally opened up a thread about this kind of thing...
My dad was diagnosed with kidney cancer just about a month ago, though looking back, the whole thing was a total fluke. The doctors are telling us everything looks fine right now—that it’s localized and hasn't spread anywhere—because we caught it purely by accident. He was seeing a cardiologist who ordered a CT scan of his kidneys, they spotted something suspicious on the imaging, sent him for follow-up tests, and boom, there it was...
Anyway, he went in for surgery about ten days ago to have the kidney removed, and they actually cleared him to come home after just five days. He’s still in that slow recovery phase, but I’m holding out hope that everything stays on track. We’re currently playing the waiting game for the pathology reports on the surrounding tissue; those should be in about two weeks, and hopefully, that’ll be the end of it, especially since the surgeons mentioned they didn't see any signs of spread while they were actually in there removing the kidney...
I was wondering, though, for someone his age—he’s 52—how long does a full recovery typically take after a major procedure like a nephrectomy? And thank God that with kidney cancer, you don't have to deal with the nightmare of chemotherapy...
One more thing... if they managed to get it all out and it truly hasn't metastasized (which is what everything points to), does he actually have better odds than someone who wasn't even diagnosed in the first place when it comes to the risk of it ever coming back somewhere else?
My dad was diagnosed with kidney cancer just about a month ago, though looking back, the whole thing was a total fluke. The doctors are telling us everything looks fine right now—that it’s localized and hasn't spread anywhere—because we caught it purely by accident. He was seeing a cardiologist who ordered a CT scan of his kidneys, they spotted something suspicious on the imaging, sent him for follow-up tests, and boom, there it was...
Anyway, he went in for surgery about ten days ago to have the kidney removed, and they actually cleared him to come home after just five days. He’s still in that slow recovery phase, but I’m holding out hope that everything stays on track. We’re currently playing the waiting game for the pathology reports on the surrounding tissue; those should be in about two weeks, and hopefully, that’ll be the end of it, especially since the surgeons mentioned they didn't see any signs of spread while they were actually in there removing the kidney...
I was wondering, though, for someone his age—he’s 52—how long does a full recovery typically take after a major procedure like a nephrectomy? And thank God that with kidney cancer, you don't have to deal with the nightmare of chemotherapy...
One more thing... if they managed to get it all out and it truly hasn't metastasized (which is what everything points to), does he actually have better odds than someone who wasn't even diagnosed in the first place when it comes to the risk of it ever coming back somewhere else?
#1611 ·
Carol Cook58 said:... and thank God there's no chemotherapy for kidney cancer...
One more thing... if everything was successfully removed and there hasn't been any metastasis (which seems to be the case here), does he actually have better odds than someone who was never diagnosed at all? I mean, is there still a risk of it coming back somewhere else?
The reality is that chemotherapy is largely ineffective for kidney cancer; instead, they turn to immunotherapy. Some of the drugs that have shown actual promise include Sutent, Nexavar, Avastin, and Torisel.
Out of those four, only two are currently approved here in the States (Sutent and Avastin), but even then, neither is covered by Medicare for this specific diagnosis.
Right now, there’s a massive struggle to get Sutent added to the Medicare coverage list, mostly because the price tag is astronomical—anywhere from $37,000 to $18333 depending on the dosage.
#1612 ·
slyseal28 said:When you're dealing with kidney cancer, chemo is basically useless; you have to go the immunotherapy route instead. The heavy hitters that actually show results are Sutent, Nexavar, Avastin, and Torisel.
Out of those four, only two are even approved here in the States (Sutent and Avastin), but even then, neither one is covered by Medicare for kidney cancer.
Right now, there's this massive fight going on just to get Sutent added to the Medicare coverage list, because we're talking about a price tag anywhere from $37,000 to $18333 depending on the dosage.
All they gave him was some Novocef to swallow... and that's it. They basically told him to just rest, stay hydrated, and call it a day. What are those drugs you mentioned even for? Look, I don't care about the cost—I just want him to recover, no matter what I have to do to make it happen.
#1613 ·
Can someone please give me some advice here? I’m feeling a bit lost.
What kind of diet are we looking at for someone dealing with pancreatic cancer? I already know the drill about avoiding heavy, fatty foods—that's a given. But what else? What am I missing?
What kind of diet are we looking at for someone dealing with pancreatic cancer? I already know the drill about avoiding heavy, fatty foods—that's a given. But what else? What am I missing?
#1614 ·
Amanda Murphy62 said:..during chemo, white blood cell counts can only be bumped up if there's a specific medical reason for it—and that's entirely up to the doctor to decide... everything else is just hearsay... I mean, there isn't some machine that can jumpstart your bone marrow, nor does any specific food have the power to make the marrow produce extra leukocytes or platelets on command... unfortunately, that's just how it works... doctors are actually right when they say things will stabilize on their own—that's just the natural cycle during chemo therapy... it knocks the marrow down, then after a while, it recovers... honestly, for those people talking about "miracle cures," I'd suggest they spend a day shadowing a hematology ward at a major hospital... maybe if they did, they'd ask the actual hematologists who are probably already exhausted from hearing about all these magical tonics...
Of course, everything else is just talk
but if it isn't hurting the body—and the doctor specifically said she could eat bacon, provided it's in normal amounts and won't cause issues—then I don't see why they shouldn't give it a shot? 🤷
The hematologist mentioned he couldn't confirm that it helps, but he also said it wouldn't hurt, so... why not?!
I really feel like natural things, like bacon or beets, aren't going to damage the system, and if it actually makes a difference, well, nobody would be happier than me... 🙏
@Rachel Chase80/">@@Rachel Chase80 - here is the link; it's in English, so I'm not sure if it'll be helpful for you, but I hope it is 🙂
http://www.cancerhelp.org.uk/help/default.asp?page=3120
#1615 ·
Carol Cook58 said:I’m actually glad this topic was brought up...
My dad was diagnosed with kidney cancer just a month ago. The doctors told him everything looks "fine" regarding the cancer itself—that it's well-encapsulated and hasn't metastasized anywhere. It was all caught purely by accident. His cardiologist suggested a renal CT scan, they spotted something on the imaging, and suddenly he was being sent off for more tests... and there it was, carcinoma.
Anyway, he had surgery ten days ago to have the kidney removed, and they discharged him after five days. He’s still in recovery, but I’m holding onto hope that everything will turn out alright. We're waiting on the pathology reports for the surrounding tissue; those should arrive in about two weeks. Once we have those, hopefully, it's all over. Even his surgeons mentioned that during the procedure, they didn't see any signs of spread while they were removing the kidney...
I'm wondering, following a procedure like this—specifically a nephrectomy—how long does full recovery actually take? He's 52... and thank God that for kidney cancer, chemotherapy isn't always the standard path...
One more thing... if everything was successfully removed and there's no metastasis (which seems to be the case), does he have better odds than someone who wasn't caught early? Does the risk of it returning elsewhere decrease significantly?
Hey. My mother went through a nearly identical situation. Her kidney cancer was discovered completely by chance. They removed the kidney, and everything seemed to go perfectly at first. But then, six months later, she went in for a routine checkup and, unfortunately, found that metastases had appeared in her liver and lungs. This disease is incredibly insidious; it hides until it's ready to strike. Right now, we're fighting to get her access to Sutent, which is highly effective, but sadly, chemo isn't doing much at this stage. And Sutent is expensive—it costs a fortune every month. $16000 I don't mean to weigh you down with my story; just hang in there and keep your chin up. I just wanted to emphasize one thing: make sure she goes to EVERY SINGLE appointment and follow-up. No skipping.
Wishing you all the best, and I truly hope everything turns out okay. 👍👍👍
#1616 ·
Carol Cook58 said:All they gave him was some Novocef to take... and that was it. They just told him to rest, stay hydrated, and call it a day. What are those drugs you listed even for? Look, price doesn't matter to me—I just want him to get better, even if I don't know what I did wrong.
When it comes to kidney cancer, our doctors have to keep their mouths shut because if they prescribe those specific meds, the hospital has to foot the bill from its own budget. If those budgets hit the red, the Secretary of Health goes after the hospital directors. Get it?
http://www.javno.com/us/article.php?id=224915
http://www.javno.com/us/article.php?id=20066
Nonocef is an antibiotic.
Based on the last updates we had before New Year's Day, Sutent should be added to the Medicare coverage list soon. The only question left is when that actually happens...🤷
#1617 ·
Angela Wright said:When it comes to kidney cancer, our doctors are basically being forced into silence. If they prescribe these specific drugs, the cost hits the hospital's internal budget directly. And if those budgets get blown, the Department of Health pulls the hospital directors' heads off. You see where this is going?
The real issue here is that the directive from the Secretary of Health is technically intended for rare diseases—but kidney cancer isn't exactly a rarity. To make matters worse, when the Secretary responds to patients, he never explicitly admits that these drugs can't be covered by the hospital's fund. In fact, he goes as far as saying that if a hospital board approves the medication, the patient should be able to get it. But then the hospitals just shrug their shoulders and claim there’s simply no money left, effectively sidestepping the mandate entirely. But let's look at the bigger picture, because this is where it gets truly grim. Our healthcare system is essentially offering patients a treatment that has a measly 5% efficacy rate, while medications like >, >, and > can offer up to 60%. Here’s the kicker, though: these advanced drugs aren't typically a "cure"; they are about extending life. And that is exactly where the bureaucratic trap lies. Under the guise of "budgetary constraints," bureaucrats are playing God, deciding whether it's more "cost-effective" to fund a cure or merely buy someone a little more time. That mindset has to change. Who gave them the right to decide how much longer a human being gets to live?
#1618 ·
slyseal28 said:The crux of the matter is this: that directive from the Secretary basically targets rare diseases, but kidney carcinomas don't fall under that umbrella. It’s not a rarity issue; it’s a systemic one. To make matters worse, when the Secretary responds to patients, he never explicitly clarifies that the medication can't actually be covered by hospital budgets. In fact, he goes as far as saying that if a hospital board approves it, then yes, the patient gets it. But the hospitals? They just point to empty coffers and distance themselves from the directive entirely. It’s a classic bureaucratic shell game. And here is the real tragedy: our healthcare system offers patients a drug with maybe a 5% efficacy rate, while options like Sutent—or even Nexavar and Torisel—can hit up to 60%. But there's a catch, isn't there? These drugs aren't typically a "cure"; they are about extending life. And that is where the gears grind to a halt. Because of this supposed "shortage" of funds, bureaucrats end up playing God, deciding whether it's more "cost-effective" to fund a cure or just buy someone a little more time. That mindset has to shift. Who gave them the right to decide how much time anyone gets left?
I am with you on every single point. I truly hope things change, because honestly, WHO ELSE BUT GOD'S WILL HAS THE RIGHT TO DECIDE HOW LONG A PERSON LIVES? 👍👍👍
#1619 ·
neonpanther12 said:Hey, my mom went through the exact same thing. They stumbled upon kidney cancer by total accident, so they just took the whole kidney out and everything seemed fine at first. But then, six months later, she goes in for a routine checkup and—bam—metastases showed up in her liver and lungs. This disease is just sneaky like that, it plays games with you. Right now we’re fighting to get her on Sutent because it’s actually effective, but unfortunately, the chemo isn't doing squat at this stage, and Sutent is pricey enough to cost a fortune every month. $16000 I didn't mean to bring you down, just stay strong and keep hoping, but I really wanted to emphasize that you need to show up to EVERY SINGLE appointment if they call you in for follow-ups.
WISHING YOU THE BEST AND HOPING EVERYTHING TURNS OUT OKAY 👍👍 👍
God dammit... I am so sorry...
But I honestly don't get it. This is all pretty new to me, so maybe I'm missing something, but shouldn't they have spotted those metastases during the initial CT scan of the kidney and the other tests? They even sent him to get his lungs scanned before the surgery and everything looked totally clear. To me, it sounds like he was in a good spot—the doctors told us it was well-contained and localized, and the surgeon said there was zero chance it had spread. It was tucked away in some part of the kidney near where there aren't many other organs or whatever. Look, I'm just a layman when it comes to all this medical stuff... 😉
#1620 ·
neonpanther12 said:Hey, look, my mom went through the exact same thing. It was totally out of nowhere—they found kidney cancer, they took the kidney out, and everything seemed like it was going great. But then, six months later, she goes in for a routine checkup and boom, metastases showed up in her liver and lungs. That’s just how this nasty disease operates; it hides until it's ready to strike. Right now, we're fighting an uphill battle trying to get her on Sutent because it's supposed to be incredible, but the problem is the chemo isn't doing squat at this stage, and Sutent is expensive enough to cost a fortune every month $16000 I don't mean to bring you down, seriously, just hang in there and try to stay hopeful, but what I'm trying to say is that you need to show up to EVERY SINGLE APPOINTMENT if they call you in for follow-ups
STAY STRONG, I'M PULLING FOR YOU AND HOPING EVERYTHING TURNS OUT OKAY 👍👍👍
So, about that Sutent drug you mentioned—how does it actually work? Like, does it shrink the cancer, kill it off, or just stop it from spreading further?
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