Posts by slyseal28

mellowbison13 said:How can I let a beloved family member, who is seriously ill, know just how much I love and appreciate them—how grateful I am for everything they've given me—without being overly sentimental and making the whole situation about my own grief? And it’s not like I can be there visiting constantly.

The thing is, just like you two, vita-vita and Nancy Hernandez43, we aren't the type of family that’s always coddling each other or constant with the hugs and kisses. We love each other, certainly, but we don't say it out loud. I usually assume everyone else feels it too, but sometimes I wonder if they truly grasp the depth of it. Every family has its own way of showing affection. But right now, I want to make sure my mother feels it. I want her to know she's the queen on her throne, but I don't want her to think we're saying goodbye... because that’s not an option right now; there are still battles to be fought and fights to win. If I were home right now, I’d probably just hold her tight and never let go. But I’m afraid that might actually overwhelm her. Honestly, expressing emotions has always been a struggle for me; I find it much easier to get things down on paper, but even then, I worry a letter might sound too much like a farewell. Goodness, I’ve never quite known how to articulate the way a soul aches.

Check this out for some insight on emotional support...

casualraven24 - I just sent you a PM 🙂

casualraven24 said:slyseal28, thank you—if you could possibly help by asking around, I’d really appreciate it. I have all my lab results right here in my files, so I can bring them along whenever needed. I'm just looking to get a second opinion.

I'll let you know tomorrow once I have a time confirmed for that second opinion.

casualraven24 said:Thanks for the link.

Yeah, she had surgery about three weeks ago—they ended up removing her entire uterus and pretty much everything else they could manage. The complication is that it spread to the ureters, and apparently, they aren't allowed to touch those. All we know for sure is that the most critical areas are drying out (I assume), which should technically be a good thing. However, during our visit to the clinic at Mayo Clinic today, the doctor told us the situation is quite serious. Honestly, the brevity of that explanation left me feeling unsettled, especially considering they had access to a massive pile of previous treatment records from just yesterday. On top of that, we have some connections over at Mayo, but those two sentences she gave us felt... I don't know, a bit thin. I’d really like to get a second opinion. Does anyone have a specialist they can recommend?

Give me until tomorrow to run this by the doctors who have been helping us. I'll get back to you by tomorrow at the latest.

casualraven24 said:My mother was just diagnosed with uterine sarcoma—Stage 3, I believe. She was originally supposed to undergo radiation in Chicago, but it looks like they’re pivoting toward chemotherapy instead. After the medical board met, the doctors issued a rather brief statement:

"Upon reviewing the extensive medical documentation, we recommend chemo via the IA regimen (Ifosfamide + Adriamycin), which can be administered at..."
"Follow-up with a gynecologic oncologist after the second cycle of chemo to assess treatment response."

If anyone wouldn't mind clarifying the situation for me—explaining the condition, the various treatment paths, and so on—I would appreciate it. I've heard that native propolis can be quite beneficial during chemotherapy, as can a healthy diet. I was particularly impressed by what I read on lepina.blog; if it isn't too much trouble, I'd love to get in touch with lepina somehow.

I have also heard about Mr. Domančić and those who follow his methods, as well as a gentleman based in Rome and others. I would be grateful if anyone could describe their experiences with similar approaches.

Does anyone happen to have Mr. Domančić's number or any contact information for anything that might offer even a little bit of help? I honestly don't know where to begin.

Are there any specific details regarding the treatment of this particular sarcoma?

Stay safe, everyone, and I wish you all good health.

You can find more detailed information about uterine sarcoma right here.

Did your mother undergo any surgery? As for Domančić, you'll find much more information over on the alternative medicine sub-forum...

mistyridge5 said:hang in there, everyone...

The link works just fine for me. 🤷

"Patients at the San Francisco Oncology Department waited hours in vain for chemotherapy!"

In short:

"About ten patients at the Mayo Clinic's Oncology Department in San Francisco spent five and a half hours today waiting fruitlessly for medication arriving from Washington, D.C., required for their chemo treatments. In the end, they never even received the drugs; instead, they were simply given a new appointment without any explanation whatsoever.

Given that chemo appointments are scheduled weeks in advance—giving the hospital ample time to coordinate logistics—this kind of conduct by a medical institution toward critically ill people is utterly irresponsible and callous.

We haven't been able to uncover what actually happened, why the necessary therapy supplies weren't secured, or why patients weren't notified promptly, despite numerous calls and hours spent on hold with the San Francisco hospital. We couldn't reach a spokesperson or anyone in the department even after several hours of trying. 'Only the spokesperson can provide information, and he's in a meeting,' we heard repeatedly until the end of the business day, after which the mobile line redirected to a landline that just 'rang into the void.'"

It would be helpful if we could figure out which specific medications were involved. If we're talking about drugs funded directly through hospital budgets (the ones on the standard formulary), then we're likely looking at budget limit issues. They might be dragging their feet just to prevent those costs from hitting this month's balance sheet...

Nancy Hernandez43 said:Just the daily grind... here in San Francisco, though I suspect you'll find the exact same thing happening in just about any major American city.👎

I was digging through some old archives on the Barkun site today—you know how those deep dives go—and I stumbled upon this piece regarding immunotherapy. It’s one of those topics that feels like it’s constantly hovering just out of reach, right on the edge of being a miracle and staying a theory. The article basically breaks down the mechanics of how we're trying to teach the immune system to stop playing nice and start hunting down malignant cells. It’s fascinating, if a bit grim, to think about the sheer complexity of the biological warfare happening inside us. We aren't just talking about "fighting" cancer anymore; we're talking about reprogramming the body's own defense systems to recognize an enemy it previously thought was part of the furniture. It makes you wonder about the pace of progress. We hear these massive headlines about breakthroughs in major research hubs like the Mayo Clinic, but the reality of translating that lab-grown hope into actual, bedside treatment for a regular person in a place like Columbus or San Francisco is a long, grueling road. There’s so much bureaucracy and clinical trial red tape involved that it can feel like we're running a marathon in sand. I remember reading a similar sentiment in *The New York Post* a while back—that sense of cautious optimism clashing with the cold reality of medical limitations. You want to believe the hype, especially when lives are on the line, but a cynical mind (which, admittedly, is my default setting) can't help but look at the gap between a successful study and a standardized cure. Still, looking at the trajectory of immunotherapy, it's hard to argue that we aren't moving in the right direction. It’s just a slow, methodical, and often frustratingly quiet revolution.

The link isn't opening for me either... what exactly am I missing here?

placidheron24 said:It’s a grim thought, isn't it? The idea that chemotherapy might actually claim the lives of twenty-five percent of those it's supposed to be saving. It really makes you stop and wonder about the fine line we walk between life-saving intervention and systemic toxicity. We talk about "fighting" cancer like it's a battlefield, but sometimes it feels more like a scorched-earth policy where the collateral damage is the patient themselves. You have to ask if our current medical standards are truly optimized, or if we're just throwing everything at the wall to see what sticks, even if the cost is far too high.
A recent study involving 600 cancer patients—all of whom passed away within thirty days following their chemotherapy sessions—has yielded some rather grim data. It turns out that in over a quarter of those cases, the chemotherapy itself actually accelerated the patient's death or was the direct cause of it. Now that this has come to light, medical professionals have been called upon to take a long, hard look at their current approaches to chemo treatments. One has to wonder how many more "breakthroughs" we'll have to endure before the industry admits when a standard protocol is failing.
The Special Counsel’s report regarding the patient's outcome and subsequent death states that they would... It’s a heavy subject, but one that warrants some serious contemplation: perhaps it's time for doctors to reconsider the standard approach to chemotherapy—specifically whether we should be looking at reducing dosages or, in certain cases, opting out of the treatment altogether..
The patient group involved in this specific study represents a mere two percent of the 80,000 individuals undergoing chemotherapy annually across the country. It’s important to note that we aren't talking about early-stage cases here; these are all critically ill patients where chemo is largely used as a palliative measure to manage symptoms rather than as a definitive cure. After reviewing the data, the findings are sobering. While 35 percent of these patients received what could be considered adequate care, the study also revealed that in 27 percent of cases, the chemotherapy actually accelerated death or was a contributing factor to it. The sheer toxicity of these treatments can trigger a cascade of complications, the most devastating being a severe infection known as neutropenic sepsis. It makes you wonder how much more transparency we need regarding these outcomes.

I just want to clarify one thing here—most of our doctors aren't exactly handing out prescriptions like candy without a reason or some form of oversight. Every physician we’ve encountered, including those mentioned by our own members, makes it a point to warn about the potential risks involved with any treatment plan. In all my time engaging with this community, I haven't met a single doctor who would dare suggest that chemotherapy or targeted therapies are somehow "risk-free." They know better.

darkmaker70 said:You mention Avastin, but nobody ever even brought that up to my mother...

They really ought to have a much deeper understanding of the pathology... If you're comfortable, feel free to send over the medical records; we can run them by the specialists we consult for second opinions. Once we have the full picture, we'll be able to determine whether Avastin is actually necessary in this case or not...

cosmicviper76 said:My dad is being treated for colon cancer with liver metastases, but he hasn't been prescribed Avastin. Is there anything we can actually do about this?

Look, just send over his medical records so we can figure out why they didn't go with Avastin. Try to scan everything you have and shoot it over to my email.

Melissa Moore39 said:Has anyone here dealt with lymph node tumors, or had a loved one go through it? I’m just looking for any advice, some comfort, or even just someone to talk to...

There are plenty of people on our forum who have walked a similar path, so I’d really suggest checking out those threads.

You might also want to reach out to leukemia and lymphoma support organizations, as they often host their own forums too.

darkmaker70 said:My mom was diagnosed with colon cancer last spring. She went through surgery pretty quickly after that, and it went well—they performed a resection to remove that section of her bowel. The biopsy came back as Dukes C.

She completed seven cycles of chemo and twenty-five radiation treatments. All things considered, the side effects weren't quite as terrifying as we had anticipated, though she did lose quite a bit of weight and struggled with digestive issues (constant diarrhea).

Right now, she’s following her oncologist's follow-up protocol—lung RTG, abdominal ultrasound, cardiac catheterization, and tumor markers—and so far, everything looks clear.

BUT, what I’m really trying to figure out—and I’m hoping someone here can give me a straight answer—is whether there is a specific test that can definitively show what those tumor cells are doing. Is it actually dormant, or is it potentially spreading? And where would one even go to get such a scan?

I apologize in advance if this has already been covered extensively here; I just haven't had the bandwidth to read through every single thread since I have a little one at home and very little free time.

A PET/CT scan. If your mother hasn't had one yet, you should definitely ask her oncologist to recommend it. You can find more information about PET/CT scans here.

If you or someone close to you is currently battling colorectal cancer, I want you to pay very close attention if you’ve been recommended for Avastin. Here’s the reality of how things work in our healthcare system: Avastin isn't classified under those high-cost outpatient drug lists; instead, it’s categorized on the hospital administration list. In theory, this means the burden of the cost falls directly on the hospital's budget rather than the patient's pocket. Unfortunately, what actually happens is that patients are often denied this specific treatment simply because the hospitals are facing budget shortfalls.

They tell patients there is a shortage or that the medication is unavailable... but let's be honest, that’s rarely the truth. The medicine is sitting there on the shelf; the hospitals just can't afford to foot the bill right now. If you have been told that you can't access Avastin at this moment, please reach out and let me know.

Our association is proud to be part of the "Together Against Cancer" public awareness campaign, running from February 6th through February 20th, 2009. We’ll have a booth set up at the Smithsonian Institution (right here in Washington, D.C.) this coming Saturday, February 14th, and Sunday, February 15th, between 10:00 AM and 1:00 PM.

We won't just be sitting behind a table; we'll have actual physicians on hand to give presentations regarding cancer, the diagnostic process, and current treatment options. This is a chance for you to ask those pointed questions—the ones you might feel too intimidated to bring up during a rushed hospital consultation.

On Saturday, Dr. Duke will be joining us. His expertise lies in the more complex territory of rare tumors, specifically sarcomas and melanomas.

Then on Sunday, we'll be joined by a specialist from Mercy Hospital who focuses on digestive tract, head and neck, and CNS tumors. She'll also be covering the nuances of tumor markers and the various side effects associated with treatment.

Please, do stop by. It would be good to see some friendly faces there.

Jamie Rivera78 said:To be precise, Sutent stops cancer growth for an average of eight months. That’s just the reality. And since we’re talking about averages, you have to assume that in certain cases, the results might even be better.

And honestly, nobody was claiming otherwise... For some, it might extend life by six months; for others, maybe two years; and for some, unfortunately, it won't work at all.

Jamie Rivera78 said:Why shouldn't we talk about Dr. Simoncini's method? Or combined MMS Therapy? Don't wait for a hundred clinical trials before you even bring it up. If you wait for that, you'll be waiting forever. Quite simply, nobody wants to fund it because treating people that way is far too cheap, making it unprofitable for Big Pharma. (Sadly, they’d much rather you have to sell your house just to afford a monthly dose, stripping you down to nothing in those final months of life.) Why shouldn't all options be laid out for the patients?

I've read about MMS, and frankly, I think it's terrifying that you're spreading misinformation to people, suggesting it can cure almost any ailment.

I'll just quote one sentence that perfectly encapsulates my stance on MMS: "I wouldn't go near that stuff without a hazmat suit, a gas mask, and oxygen tanks!!!"

Our association promotes alternative treatments—not outright charlatanism. My faith in medicine remains strong, and as long as I have even an ounce of common sense left in my head, I am going to trust doctors first and foremost.
As for the exorbitant cost of medication—that is an entirely different issue and a separate battle altogether. That is precisely why we fight to get these drugs added to the insurance formulary.

Jamie Rivera78 said:http://www.wddty.com/033638003695753...on-t-work.html

Here is some info regarding Sutent:
http://www.kidneycancerresource.com/index.php/Sutent

I’m certainly not trying to undermine the work of the association, but I believe the full truth needs to be out there. To be blunt, Sutent doesn't "cure" anything; at best, it might extend life by a few months. And even that isn't a settled fact. From what I hear, the side effects are quite severe. I'm not sure that's what patients are actually signing up for. It seems to be a similar story with Tarceva.
So, while Sutent and Tarceva undoubtedly work in certain cases, whether they truly extend life is debatable. To me, the cost-to-benefit ratio just looks unfavorable.

To be specific—our association has never once claimed that Sutent or Tarceva are cures. We speak strictly about extending life. You mentioned "a few months"... but you aren't seeing the whole picture. People who have reached out to us have provided their own medical documentation proving that Sutent has been incredibly effective for them. Initially, many of these individuals were buying Sutent on their own, through various means... One woman who appeared with us on a show even sold her house to afford it... Her tumor shrank by as much as 80%... Most of them eventually had to stop taking the medication simply because they ran out of money... Most were forced into a 3-4 month hiatus... During that time, the tumors began growing again... Those same people continued to fundraise for the medicine, and once they raised enough, they resumed treatment. And then, the tumor growth would stabilize again...

It's clear you haven't followed the complete narrative regarding Sutent.

As for the side effects—yes, serious side effects can occur, much like with other targeted therapies. They are far from harmless, certainly. And frankly, I don't recall anyone in our association ever claiming that Sutent or Tarceva were without side effects.
What people like you fail to grasp is that those fighting for these drugs are actually fighting for just a little more time with their loved ones.

For some patients, these drugs will work, at least for a while... For others, unfortunately, they won't... That is the risk the patients themselves take. And what the rest of us, who stand by them, should be doing is supporting them and encouraging them in their difficult struggle.

Angela Wright said:Someone posted a link here on our forum, so I figured I'd drop it here too:
http://blip.tv/file/1735979

I’m not impressed. If anything, I’m disappointed.

My take on why cancer treatment is more successful in certain countries is this: first off, it comes down to the availability of new targeted therapies and access to clinical trials, which offer a fighting chance at extending life for those facing incurable or severe diseases. For a year now, I've been trying to get my pigeon into a study, and I haven't given up yet...

As for the claim that heart cancer doesn't exist—that's nonsense. Of course heart cancer exists (though it's rare)—after all, the heart is primarily a muscle.

But what bothers me most is the assertion that cancer starts in the mind! Good grief, people, it isn't just the elderly who get sick after working for a hundred years and stressing over trivialities! Children, young adults, and seniors all get cancer! It has nothing to do with your mindset... If it did, you could just think your way out of it.

rapidfalcon13 said:Dear friends of this forum,

Today, our dear Dina9 has gone to the angels 😢... and I know that, because she truly was one🙂. She closed those sad eyes of hers (in recent times) and went to be with her father—that’s how she used to say it, that her dad was waiting for her, even though she still found the strength to keep fighting... until today.

I just have to get this out there... 😢
My dearest D... I am going to miss you so much. I'll miss all your beautiful words, all your dreams, and that incredible optimism you held onto despite the sea of bad things surrounding you... It’s hard, and my heart truly aches... I love you so much, and I mean it sincerely...

Our dear Dina... damn this disease... I love you so much. Thank you for the beautiful words of support and love you gave me every single time I felt like I was sinking... PDT_Love_06

I believe you’re in a more beautiful place now, waiting for us... and when we meet again, we’ll grab a coffee together and enjoy a really strong one.

Who missed last week's broadcast of America Live? It featured an incredible lineup of journalists (Zuber, Nađvinski, Sever, and Mikleušević) sitting down with some truly courageous patients to discuss the reality of Sutent. you can catch the replay right here.

The program is broken up into five segments, but trust me, it’s well worth your time. Even Professor Ivan Đikić stepped up during the show to offer his support to those fighting these illnesses.

We have to keep pushing forward—not just for Sutent, but to ensure future life-saving medications actually make it to the people who need them.