Posts by slyseal28

steelfalcon15 said:The whole point of this movie is how these profiteering vultures run insurance companies. Honestly, I’m convinced the exact same kind of scum pulls the strings at big pharma, too. I still can't wrap my head around how a single medication can cost HALF A MILLION DOLLARS!!! What, are you supposed to sell your house just to survive the treatment?!?! 😲 😲 😲 It's sickening.

Anyway, arguing about it all feels pretty futile at this point. Let's focus on something more productive, like how to actually recover or how to support those close to us. I have an idea for helping people—it's a bit complicated to pull off, and frankly, I don't feel like typing out the whole thing on a public forum. Angela Wright, slyseal28, if you two are interested, shoot me a private message...

I agree—total vultures.🙂

Sent you a PM...

steelfalcon15 said:Angela Wright, have you ever sat down and watched Michael Moore's "Sicko"? If not, I’d honestly suggest you give it a watch—if you don't have a way to see it, just shoot me a DM and I can get a copy over to you...

If memory serves, the documentary focuses on health insurance... though not really on those left out in the cold without coverage, but rather on the people who actually *do* have insurance, only to find out how much the big insurance companies try to screw them over. It’s all that nonsense where they'll cover surgery on one finger but suddenly decide the other one isn't covered...

I'm not quite sure how that ties back into the pharmaceutical companies, though... 😕 — it looks like the conversation drifted in that direction, didn't it?

Ashley Bishop32 said:Hey everyone,
Does anyone have an update on how Dina is doing?

She actually reached out to me yesterday... her blood work is looking pretty grim, and she was barely able to get any words out. She mentioned she was heading to the hospital to get her hemoglobin levels checked. I haven't heard anything since then...

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?

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.

Angela Wright said:...It’s funny how people just keep forwarding things, thinking that by spreading the word they make it bigger and more powerful than cancer itself. It gives them this little sense of personal satisfaction, a feeling that whatever is happening to someone else—someone they know—actually matters...

And that’s exactly how change starts... Sending love your way!

In that spirit, we are calling on everyone to join our final push to collect signatures for the petition regarding expensive medication costs!

The American Medical Association, along with our own association, "For a New Day," will be hosting a final signature drive from December 15th to the 21st at the Mall of America. We are fighting for high-quality treatment for chronic, severe, and rare diseases based on specialist recommendations, fully covered by Medicare.

Throughout the coming week, various participating organizations will be highlighting their specific goals and activities. This includes the "Sanus" group—a support network for parents of children battling cancer—as well as the American Heart Association, the United Spinal Association, the Rain Man foundation, the American Diabetes Association, the local Cancer League, the "All for Her" association for women fighting breast cancer and their families, and our very own "For a New Day."

Visitors can contribute either by signing the petition or by purchasing specific products, where all proceeds will go directly toward supporting these associations.

To keep spirits high, the whole thing will be packed with entertainment featuring several well-known names, such as Luka Nižetić, Vlatka Pokos, the Meritas group, Jelene Radan, Ivana Kindl, Antonija Šol, Remi, and many others, alongside concerts from popular bands. You can check out the full event schedule here.

This petition drive originally kicked off back in July under the initiative of our association, "For a New Day." So far, we’ve gathered over 15,000 signatures—we’re actually closing in on 20,000 now—and this is the final phase before we take these citizen demands and hand them over to the Department of Health and Human Services and Medicare.

The campaign is running under the motto "Together for a Healthier Tomorrow," because a healthier future belongs to every citizen in the US. Beyond that, this week-long effort is meant to spark civic activism and demonstrate what grassroots initiatives can actually achieve. It’s about proving that through collective action, we can improve our lives and work together to force the changes necessary for better healthcare.

cosmiceagle4 said:The cure for cancer is already out there. It’s not some mystery we haven't solved; it’s just a matter of who is willing to admit it.
Honestly, I have to wonder: how much do they actually care about finding a cure for cancer? It’s hard not to be skeptical when you look at the sheer scale of the industry involved.

Honestly, this is incredibly unprofessional of you. I’m almost embarrassed to say it, but those were some seriously foolish remarks.

cosmiceagle4 said:There’s no such thing as an incurable disease. There are only people who refuse to be cured.

Statements like that are bordering on pure insanity. 🙂

cosmiceagle4 said:Here is the link to that Chinese study:
http://www.scribd.com/share/upload/5...vcd8dqq41b4q1i
Here is what my diet looks like lately:
http://www.scribd.com/share/upload/5...ldfh0tpcqg4ur0

Ty, those links you sent aren't working. I tried clicking through, but none of those pages featuring your "miraculous discoveries" actually load.

brightgardener8 said:Dear friends,
Over these last 20 months spent on these forums, I’ve found it incredibly difficult to read when you all lose your loved ones. I truly understood that pain, knowing that eventually, I would be standing right where you are now.
My mother passed away yesterday. 🙂
She suffered for far too long, so in a way, there is a small sense of relief knowing her struggle is finally over.
I sincerely hope she is in a better place now.

Nothing will ever feel quite the same without her.

I wish you all strength as you navigate your own hardest battles in life.

Dear, please accept my deepest condolences. We are all standing right here with you.

Grace Fowler said:My dear friends—and I say "dear" because you truly are—I’m checking in with what might be the most difficult news I’ve ever had to share here.
The PET scan results were devastating. It’s showing an overwhelming number of positive lymph nodes, scattered everywhere from my neck down to my pelvis. It’s just... it's awful. The biopsy on the neck node confirmed the scan's findings: we're looking at adenocarcinoma. On the one silver lining side of things, the stent placement in my right kidney was successful, which opens up the possibility of systemic chemotherapy to try and get this under control. If I sound heavy-hearted, please don't take it personally; my will to live remains incredibly STRONG, and I am not throwing in the towel. I’m heading to a tumor board meeting at the oncology center in a few days to map out our next moves.
PLEASE, MY FRIENDS, when you read this, don't let it weigh you down. Instead, please just cross your fingers and think, YOU CAN DO THIS, DIANA!!!
Your support and good vibes mean the world to me.
Sending hugs,
Diana!!

Dear Diana, we are going to get through this together. Please reach out once you can so we can send that PET scan over for a second opinion!

Our association will be hosting a booth over at Malla Avenue tomorrow and the day after, running from 10:00 AM until 9:00 PM. We’ll be out there spreading the word about our knowledge against cancer project and gathering signatures for our petition.

If you happen to be in the area, please do swing by. It would mean a lot if you could support us 🙂

Angela Wright said:Just hit up Google and search for specialized clinics that actually deal with these kinds of issues. Once you track them down, send over copies of all the test results and ask for a second opinion. It’s rarely free, but it shouldn't be so expensive that it breaks the bank. You can handle the whole thing via email.
From what I've seen through indirect experience, there's almost always a way out for people who have been deemed "hopeless." Unfortunately, here in the States, doctors often give up on patients if they don't see an immediate path to a permanent cure, which is a fundamentally flawed approach. The goal should be to buy time, especially since so many promising drugs are just sitting there waiting for the green light for clinical application.

For instance: The Dana-Farber Cancer Institute in Boston has a portal specifically for getting a second opinion. It costs about $500, and they provide you with several different treatment options.
The link is right here.

feralcobra92 said:Does nobody here know anything? You're all constantly immersed in this topic! Come on, people, react. People actually asked me to post this question on the forum, and now I have nothing to tell them.

The whole situation regarding expensive medications is a nightmare. Back in September, the Department of Health and Human Services announced that every patient would receive their therapy. But here’s the catch: any drugs not covered by the Social Security Administration are being dumped onto the hospitals. And let's be honest, those hospitals are broke. The Secretary essentially just offloaded the responsibility onto the medical centers.

If you want my advice, go to the media. It’s really the only way to prove that patients' rights are being trampled upon.

The specialists aren't the ones at fault here. They’re literally being threatened with termination if they prescribe an expensive therapy that isn't on the Social Security Administration's approved list. If you need contacts for journalists, just let me know—I can pass them along.

You can read the open letter we sent to the Department of Health and Human Services and the press over on the Association's website.

Just so everyone is in the loop—the Healthcare Coalition along with our own Association have sent an open letter to the Secretary of the Department of Health and Human Services, as well as all the major news outlets, regarding the skyrocketing costs of medication and our formal petition.

You can read the full thing right here.

Lisa White54 said:We haven't actually gone looking for a second opinion. Honestly, I don't even know where I would go, or if there would be any point, because everywhere we turn—no matter what kind of search we run—they just demand old medical records. My husband has been undergoing treatment for four years now, so saying I don't have documentation feels impossible. In fact, all I really have are discharge summaries, and even those are pretty sparse. During his last PET scan at our local general hospital, he didn't bring anything except his most recent discharge letter. And then they attacked him for it! He’s quite sharp-tongued, so he shot back: "What exactly are you doing, transcribing? Just write down what you see!"
In response to that, they opened fire on him, eventually trying to convince him that he was just *so* incredibly sick. It sent him straight into a depression; he spent ten days stuck in bed, spiraling, wondering why they were telling him things were so dire. It took everything I had to calm him down.
So, I'm honestly lost as to what the right way to handle this is.
We’re going to undergo a laryngoscopy exam, and we'll just see what happens. Until then, may God help us.

To get a second opinion, you need to have your discharge papers, X-rays, CT scans, or PET scans ready. By law, the hospital is required to provide you with all your medical documentation. If they refuse to hand it over, reach out to the Jedro Association and we will try to intervene. And if you want us to help you coordinate getting a second opinion, please let us know.

If I can offer one piece of advice from my own experience: ALWAYS, and I mean always, seek a second, or even a third, opinion.

Susan Ruiz76 said:I honestly can’t tell if I completely missed that article (that notice from the Social Security Administration) or if it hasn't even been released yet🤷? It’s really starting to get under my skin what they might write; the Secretary promised the moon and stars, but unfortunately, the reality on the ground is waaaaaaaaaay, waaaaaaaaaay different. Even though all the hospital directors received memos from the Social Security Administration (or so they claim at the FDA) warning them that hospital boards must approve requests for drugs not yet on the approved list—provided it's medically necessary to save a patient's life—they are all playing incredibly dumb. And where does that leave us? Right back where we started. They just pass the buck from one hospital to another. Is it even financially sound for one single regional medical center to shoulder the entire burden of every oncology patient in their region? Or shouldn't these drugs be approved at the expense of the local municipal hospitals? That way, the cost of expensive medications would be distributed more fairly based on where the patients actually live.

Well, of course the practice is different. That is exactly what we are fighting against. We receive calls and emails every single day from people who aren't getting their therapy on time. The issue is that most people are afraid to go public. It seems like the problems only get resolved once they hit the headlines. I just hope that some people—at least a few of them—will finally wake up soon.

Friends, we wanted to send out a quick reminder about the upcoming Terry Fox Run 2008. It’s happening on September 28th, 2008, at the Jarun waterfront in Washington, D.C. We’ll start gathering around 2:00 PM, with the actual race kicking off at 4:00 PM. This year’s charity effort is being put together by MPG LLC, the Embassy of Canada, the American Cancer Society, Chicago Holding, and the Esplanada Hotel. They are working hand-in-hand with our own "For a New Day" Association—made up of patients, families, and friends—to invite local businesses and citizens to get involved. Whether you want to run, walk, bike, skate, make a donation beforehand, or even volunteer on the day itself, every bit of support counts. To keep spirits high, the wonderful humanitarian Sonja Šarunić will be hosting the festivities.

The afternoon kicks off at 2:00 PM with a big concert featuring Luka Nižetić. Right at the start, attendees will have the chance to win some great prizes through trivia questions—including two bicycles that you can actually use to jump straight into the race.

The official opening ceremony is set for 3:30 PM, featuring opening remarks from our organizers and sponsors, followed by the start of the race at 4:00 PM sharp. After a few surprises during the first half of the event, once the runners, cyclists, and skaters have headed out, we’ll have plenty of music to keep the crowd energized. You can look forward to performances by Branko Bogunović - PIF, the B2 Blues Band, the funky rock outfit Pokus, and the pop group En Faca coming all the way from Rijeka.

Once the race wraps up, the fun continues with a raffle where you can win a cell phone, various gear, and other prizes. The charity stalls and the En Faca concert will stay active until about 6:30 PM.

You can find more details regarding the full schedule here.

So please, do come along!

Melissa Stewart said:Ewing's
The unnamed patient received his first round of chemo from the 16th to the 18th; Etoposide, Holoxan, Doxorubicin, and Uromitexan. He actually handled it fairly well. For the first two days, he felt fine and was even eating. By the third day, he only managed breakfast. No vomiting, just some mild nausea. After that third day, he started eating slowly again, though he has to be extremely careful with his diet because his stomach is giving him trouble.
His next session is scheduled for October 9th.
However, I saw our unnamed doctor today, and he mentioned that this is just the standard treatment available here in the States. He suggested hyperthermia therapy—using high temperatures to make the tumor more unstable—which could then be paired with biological chemotherapy and immunotherapy.
Since we have relatives in Chicago, he suggested looking into options in Philadelphia or New York City.
We’ll know more once we call to arrange the specific meal plan, the "supplements" for immune support, and the planned therapy protocol.
The CT scan noted that a Color Doppler should be performed due to potential thrombosis, but they didn't do it at the hospital, so he said it needs to be done urgently. They also need prothrombin time, activated partial thromboplastin time, clotting time, and D-dimer tests.
He's worried about possible micrometastases, so we need to get those results immediately.
He's baffled as to why they suggested scintigraphy, which isn't even reliable, instead of a PET/CT.
But of course, why bother spending the money when he has plenty of time? It’s as if they didn't care how much they were screwing him over in the first place (I honestly can't believe they didn't suspect a tumor earlier, given he couldn't sleep at night from the pain, yet they treated him completely incorrectly).
Our local experts... I feel like killing them!
So, what now?
My sister stayed behind in New York City because he told her they want everything written down as soon as possible so we can come in and finalize the details.

Dear, as far as I know, there is no scientific evidence that sarcomas can be successfully treated with homeopathy. If such evidence does exist—please, for heaven's sake, send it our way.

Sarcomas are rare tumors that are best handled surgically. However, because they lack specific markers, they are very often diagnosed late, which usually means they are already quite large. When my husband was diagnosed, his was 20 cm and located in the mediastinum. Some sarcomas are, thank God, chemosensitive and can be managed with chemotherapy, while others respond to radiation.

Some sarcomas are so incredibly stubborn that they don't respond to anything... We are still waiting for the right targeted drugs that can truly block their growth. From all over the world, we hear that clinical trials for these new anti-tumor drugs are underway. Some are currently in phase 2 or 3 trials.

Specifically regarding Ewing's sarcomas, our professor here is seeing very promising results, so please don't lose hope. Try to follow the oncologist's advice. The side effects of chemotherapy are what they are... You just have to find a way to deal with them.

For blood counts, Neurobion forte capsules (Vitamin B) are excellent; they cost about $43 and you don't need a prescription.
If he is suffering from intense pain—you MUST request pain management. Pain CAN be managed. My husband went through horrific pain. He literally couldn't stay in bed for a month. He couldn't even stretch out. On top of that, he was as stubborn as a mule and wouldn't even consider Tramal or similar medications...

Now he's taking Tramal, 100mg three times a day (I think), and the pain has vanished.

Ultimately, you have to make the decision and try to act according to your conscience. What matters most is that you believe in what you're doing.

Maria Jones40 said:It’s not that doctors are dragging their feet on administering therapy; for the most part, it’s Medicare that’s the bottleneck, and honestly, the physicians aren't to blame for that. Medicare writes the rules, and if you don't follow them to the letter, you’re going to get hit first by the head of the Mayo Clinic, then by colleagues from the "opposing camp." They’ll even threaten that you’ll end up footing the bill yourself. People just don't realize the precarious position these practicing doctors are actually in. It’s all about "who has your back" if you want any semblance of leniency. Lately, though, it feels like Medicare's stance has softened slightly—or maybe it's just my perception—but they remain incredibly rigid.

I’m going to be a little blunt here, so please excuse me in advance. My Pigeon would put it this way: "It isn't just a mess; the dog took a massive dump right in the middle of the room!"

For a treatment to even be approved by Medicare, a doctor has to officially prescribe it. Of course, because of the very reasons you mentioned, some physicians simply don't dare prescribe expensive medications, even though doing so flies in the face of the Hippocratic Oath they swore to uphold.

So why on earth don't these doctors take a stand? Why don't they raise their voices and say, "We can't go on like this"? Patients are being denied life-saving therapy because of budget shortages, flawed legislation, and various other systemic failures. Why don't they stand up? Why are they staying silent like cowards?

There isn't a single patient out there who wouldn't stand up for their doctors. Our society is unfortunately saturated with cowards and sycophants who feel entitled to dictate the fates of others, which is why we find ourselves in this position—because the rest of us have remained nothing more than obedient sheep. Forgive me once again; I truly don't mean to offend anyone. It’s just that I am utterly fed up with this silence, both from the medical community and from the patients themselves.

Maria Jones40 said:Regarding the Anne Frank Foundation, you’re absolutely right. By the time it actually becomes fully functional in ten years—assuming that even happens—those who were potential donors will be a decade older and much sicker. On top of that, a huge number of people who enthusiastically signed up as potential donors will likely back out due to fear and uncertainty. It’s just like the situation with organ donor cards. People sign them without really grasping the implications, only to change their minds almost immediately. For America, it would be far more cost-effective to refer rare disease patients—those for whom transplants are impossible within our local clinics—to specialized centers abroad where it can be done with minimal complications and maximum expertise. The funds already collected, and those planned for collection, could instead be invested into improving the standards of care for hematology patients across our regional hospitals. Just look at the conditions in Rebarski's hematology department; the facilities there are catastrophic for such patients. That is where the money needs to go—so that people feel treated like human beings rather than paupers.

I disagree with you. I believe in the strength of foundations and in the people who have pledged to help the sick. It seems to me you are overlooking the power of civil society, which has actually begun to develop quite a bit recently. Civil society will play a pivotal role in matters like this. This is something our country has historically lacked. The Anne Frank Foundation is one of the few civil institutions that has accomplished so much in such a short window, which is why I think it’s unfair to slap the "failed project" label on them. That is simply my view.

I honestly believe our collective responsibility is to teach our children that projects like this deserve our full support—that’s where our real strength lies.

Maria Jones40 said:Eventually, when I actually find a spare moment in my schedule, I intend to lay out a documented list of all the insults that have been hurled my way so far. Once I’ve laid them all out, everything will finally be properly contextualized and argued.

Could you please lay out those insults you keep mentioning? I’m serious. And let me ask you one more time: what is the proper way to handle doctors and the heads of oncology departments who drag their feet when it comes to approving treatments? I actually have a folder of email correspondence I could send over—it’s a collection of exchanges I've had with several critically ill patients who were ultimately denied the care they needed.

My husband happens to be one of those lucky individuals who caught a break with some truly exceptional doctors. However, we’ve both been firsthand witnesses to far too many stories from patients who simply didn't have that same stroke of luck.

Maria Jones40 said:Just a quick observation regarding the Ana Rukavina foundation—it feels like just another rushed project that’s destined to fizzle out here in America. I honestly don't see enough capital being raised to make a dent, nor do I expect those individuals who were supposedly "tested" to step up when actual, concrete help is requested. For them, this was likely nothing more than a momentary surge of passion, a fleeting impulse that won't stand the test of time. Furthermore, this specific model of charitable transparency is becoming increasingly obsolete. By the time a banking system or a structured fund actually becomes fully operational in ten years, the method itself will be outdated. It’s shaping up to be yet another failed initiative. I truly wish I were being pessimistic for no reason, but we'll see how it all unfolds.

What you’re saying is honestly pretty chilling. How can you be so certain that individuals won't respond to treatment? Is that just a gut feeling you're leaning on, or do you actually have hard evidence to back up such a heavy claim? And frankly, where exactly is this type of transplantation being abandoned? If these methods are being phased out, I’d love to see some specifics. Could you point us toward any actual clinics in the States that are still utilizing these newer techniques?

Maria Jones40 said:Being sharp in practice means exactly what you're describing, but that isn't just an issue within this specific field. The entire country is structured this way; money, arrogance, and sheer rudeness are prioritized, while actual knowledge, hard work, and genuine effort aren't even considered desirable categories anymore.

My husband and I have been fortunate with our doctors—everything from primary care physicians and oncologists to cardiologists, surgeons, and even the young residents... Truly. However, we did run into a Chief of Oncology who refused to approve a third line of chemotherapy for metastatic soft tissue sarcoma simply because of the cost. He claimed there were no more viable therapies left for my husband. Now, to be fair, this was a treatment registered here in the States, but not specifically for this indication. That said, globally, it is standard practice for treating these severe illnesses. It isn't a magic bullet, and it certainly won't cure my husband, but let’s be honest: those breakthrough drugs that could actually stop this damn disease don't exist yet. But abroad, they don't just wash their hands of patients like this; they provide treatment, even if it's just palliative. This particular chief was against it due to budget constraints and some friction with our attending physician—a conflict we actually learned about through entirely objective sources. What I'm trying to say is—unfortunately, there are doctors out there who simply do not do their jobs well. There are doctors who lack even the most basic level of human communication with their patients.

And of course, there are patients who are difficult. They can be truly terrible... But when a doctor makes a mistake, the consequences are fatal.

In our association alone, over the last three months, about ten people have reached out because they were denied both treatment and information. It is absolutely unacceptable.

Our organization didn't start out looking to tear these doctors down; our goal is patient education. We try to inform patients about their rights and help them secure second opinions from renowned international clinics, so they can make informed decisions regarding their right to treatment alongside us.

We even encounter situations where patients who obtain a second opinion are still denied therapy, often through bureaucratic stalling tactics meant to delay approval. So, I ask you—how should one deal with doctors like that?

Finally—we make it a point to praise the doctors who treat patients with dignity and humanity. We try to support them by empowering patients through education. And I believe we have already made quite a significant impact.