Posts by neonpanther12

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?

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?

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!🙂

Angela Wright said:So, just like I mentioned to you on PMU, but now I'm saying it for everyone else too...

It’s most likely a matter of getting Sutent covered. We were actually discussing this in our association yesterday, and we’re sending out an urgent inquiry today to find out exactly when Sutent will finally be added to the Medicare formulary. We’re also planning to take this issue back to the press—likely CNN—so keep an eye out.
We keep hearing from people who have been paying out of pocket for months now; they've practically liquidated their entire life savings just to stay afloat. It’s high time people got some sort of timeline so they can actually plan for the future. You can't just skip doses; continuity is everything here. If you break the cycle, the treatment loses its edge, and the response just isn't there.

Angela Wright said:Because we’re all living through such an incredibly brutal stretch—not just those battling illness, but their families and everyone close to them who gets dragged into the fray—and because our society lacks the psychological support systems we desperately need, I decided to start this forum. I’ve been caught in the middle of this storm myself, so I figured we could create a space where those of us who have been there, or are currently navigating it, can offer some semblance of advice and solidarity.

Feel free to drop a post here. I promise I'll always be around to reply, offer a suggestion, or at the very least, just sit in the trenches with you. Sometimes the weight of watching someone else fight is even heavier than the battle itself.

Personally, I’ve walked through hell, and I’m still walking through it. It’s a path no one should ever have to navigate alone.

Sending big hugs to everyone.