324 posts shown.
Angela Wright said:My mother should have been given either Avastin or Erbitux right from the start, and I honestly don't understand why she wasn't. Usually, when dealing with metastatic colorectal cancer, people get Avastin first, and Erbitux doesn't even come into play until the third line of treatment. It seems like they're just following some standard Medicare protocol.
You need to ask about K-RAS testing.
Actually, if you look at the Medicare guidelines—both Avastin and Erbitux are listed for first-line treatment. The distinction lies in the application: Erbitux is typically reserved for patients whose metastases are localized solely in the liver, where surgery might actually be an option to clear the cancer, provided there isn't a KRAS gene mutation present. That’s precisely why that KRAS test is so vital.
Here is the link to the drug formulary:
page 69 - criteria for Erbitux
page 70 - criteria for Avastin
ironsailor22 said:Everything I’ve witnessed just reinforces my belief in how fundamentally broken this entire system is. It makes you realize that if we want to actually combat this kind of institutional rot, we have to unite—because, frankly, in this so-called "democracy" of ours, sheer force of will is often the only thing that moves the needle. But how do we actually achieve that unity? Given the temperament of our people, I honestly don't know. It feels like everything in this country starts and ends with a few brave individuals stepping up, while the masses are only ever stirred into action by a football game, a rock concert, or a big seasonal sale at the mall.
I find myself agreeing with all of that, though I would offer one small correction: it isn't that the advocacy groups aren't doing anything. In fact, the nonprofits and activists are working incredibly hard. I know this firsthand because I collaborate closely with many of them. The real issue lies with the general public, who seem much more interested in sitting at a coffee shop than showing up to support a cause. And don't even get me started on how few patients are willing to speak out publicly. Without that public outcry, the powers that be simply face zero consequences...
As for the host—don't act surprised. She was once a patient herself, but I can almost guarantee she wasn't stuck waiting hours for diagnostic tests like the rest of us... That explains why the segment felt the way it did. We couldn't exactly turn her away, or who knows what kind of fallout we would have faced. At least this way, the true colors of everyone involved were laid bare for all to see.
ironsailor22 said:Regarding the claims you've made in this post, I won't even bother debating them because they simply aren't true. Furthermore, I am all too familiar with the various initiatives taken by both you and other organizations. I’ll take this moment to commend one of your earliest efforts—that petition for equal treatment rights for those suffering from rare diseases. In my view, that was the correct path to take, but since then, you haven't directly challenged the system. You've become just like any other organizer of charity galas or fashion shows, focusing on fundraising rather than actually changing the status quo.
I feel compelled to weigh in here... reading this actually makes my heart ache, because we are out there working—mostly just the three of us—and we only have two hands and two legs each. We have some volunteers and activists who step up occasionally, but this organization is active every single day...
You can find
some of our media appearances here on our YouTube channel, and you can read about our activities and featured projects right here.
I ended up in a heated debate with the official on the show *Open Forum* last year because all treatments for oncology patients were suddenly suspended at the hospital in Reno, and Professor Petković also spoke out publicly. That broadcast actually brought positive results for the Reno hospital, but for us, it resulted in three months of pure hell with the Department.
link 1
link 2
link =63230&tx_ttnews[backPid]=23&cHash=f1ad1cca92']to the Open Forum broadcast.
What you wrote truly stung, and I feel you don't realize how hard these organizations work (and I don't just mean ours), which is why I'm responding. Perhaps we are running out of ideas, or perhaps I just don't know... feel free to join us and suggest, for instance, how we might mobilize a mass patient uprising.
That petition was quite successful, but even then, we couldn't gather more than 50 patients in public spaces. Patients tended to mail their petitions in, while very few showed up at the booths... So, tell me, how exactly is one supposed to organize a patient revolt?
Keith Doyle33 said:Greetings to everyone on the forum. About three and a half months ago, I underwent surgery for a tumor in my mouth—on the left side, right where the hard palate meets the soft palate. It was a low-grade malignant tumor, meaning it doesn't metastasize. I haven't been prescribed any further therapy, and my doctor tells me I am completely cancer-free.
The issue, however, is my speech. Even though my doctor promised my voice would return to normal within two or three months, it’s been three and a half months now and things aren't looking great. My voice sounds nasal, almost like I'm constantly talking through my nose. My articulation just isn't what it used to be. I struggle with certain words, get tripped up mid-sentence, and find myself running out of breath when trying to speak longer passages or read aloud. Does anyone have any practical advice? Has anyone dealt with something similar? How does one manage to live and function normally with this kind of speech? How long does it actually take to get back to baseline? And can speech therapy exercises really help, and if so, to what extent? Thanks in advance.
There is an association based in Chicago that primarily supports patients who have lost their natural voices due to surgery, mostly those who have undergone a laryngectomy.
That said, they work closely with speech pathologists, so you should definitely be able to get some solid guidance from them— here is the link
ironsailor22 said:I’m going through this exact nightmare right now with a single parent dealing with bone metastases. Despite the patches, there isn't a single moment free from pain. Nobody in the house sleeps at night, and I’m honestly at a loss for how to help. I end up arguing with our family doctor every single time I ask for stronger patches, but he just refuses to prescribe them. Everyone talks about how pain needs to be managed and how patients shouldn't have to suffer, yet our healthcare system does absolutely nothing. You get the patches and that’s it. Whether they actually work or not seems to be nobody's concern. We’re living in the 21st century, and despite all the scientific miracles and high-tech advancements, people are still dying in agony and misery like it's the Middle Ages.
They tell you that you can live relatively long with bone metastases because the vital organs aren't directly threatened, but this suffering has been dragging on for three years now. It gets worse every single day. I just want this agony to finally end so she never has to feel this pain ever again.
Maybe try reaching out to Dr. Loncar— link to palliative care
He has an email and a cell number, and he works over at the Traumatology Clinic in New York City. To be honest, I've heard from several people that he's excellent...
feralridge3 said:Do I fit in here with my anaplastic ganglioglioma?
Yes, you certainly do. If you're up for it, please join us. 🙂
We will be hosting a meeting for those living with rare tumors and their families at our new location on January 21, 2010, starting at 6:00 PM. The meeting will take place at the Peščenica Health Center, located at 38 Ivanićgradski St.
The meeting is being organized by our partner, the American Association for Rare Diseases. Our primary goal is to bring together everyone affected by rare diseases.
The focus of this gathering will be on coordinating joint initiatives for Rare Disease Day, which is being observed across four major cities: New York City, Miami, Seattle, and Indianapolis. Crucially, we are working on drafting a proposal for the National Rare Disease Plan. We have to fight to ensure that the measures most vital to patients are actually included. I intend to highlight several issues specifically critical to rare tumors: faster diagnostic timelines, improved access to cutting-edge targeted therapies, and participation in clinical trials.
It is vital that you show up. Because let’s face it—if patients don't speak up about these struggles, the healthcare system simply acts as if the problems don't exist.
In the United States, rare diseases are generally defined as those affecting fewer than five individuals per 10,000 citizens. Globally, there are between 5,000 and 7,000 known rare diseases; while each individual condition affects few people, their cumulative impact hits roughly 20 million people across America. However, pinpointing an exact number of sufferers is difficult, largely because many rare conditions are lumped under the broad umbrella of "metabolic and endocrine disorders," and epidemiological data for many of these conditions remains woefully inadequate. Rare tumors account for 30% of all rare diseases, and like other rare conditions, they share a common set of obstacles:
-The inability to secure an accurate diagnosis
-A chronic lack of information
-A deficit in scientific knowledge and research
-Severe social consequences
-A lack of appropriate, high-quality medical care
-Prohibitive costs for the few available medications and therapies
-Gaps in the accessibility of treatment and care—innovative therapies are often distributed unevenly across the country due to delays in pricing negotiations, insurance reimbursement decisions, and a lack of familiarity among physicians, compounded by the fact that there is rarely a consensus on therapeutic recommendations.
Living with a rare disease places a massive burden on the entire family, as finding adequate treatment feels like an uphill battle. These hurdles stem from misdiagnoses, information gaps, insufficient scientific expertise, subpar medical care, social fallout, the high cost of drugs, and systemic failures in accessing necessary treatments. Given this reality, establishing specific public policy at the national level is absolutely essential.
If you aren't sure whether you are dealing with a rare tumor, please reach out to us.
ironsailor22 said:Since things are rarely ever as straightforward as they seem around here, let me offer some verified info just in case anyone needs it.
On another forum, I stumbled upon a post claiming that the American Hospice Friends Association provides all necessary oncology care equipment for free—all you had to do was call them, show up with an original and a copy of the medical history, and present an ID.
I actually followed those instructions, only to find out it’s completely inaccurate and the process isn't nearly that simple.
First, the patient has to be officially admitted to hospice. Then, you have to coordinate a home visit with a doctor, and only after that assessment can the doctor determine if the requested medical aids are actually necessary. And keep in mind, this specific service only applies to patients in the terminal phase within the Washington, D.C. area.
That information might have been valid a year ago. I know because I personally called them regarding someone needing an oxygen concentrator. It’s possible they’re struggling with staffing shortages or budget constraints, given that they operate as a non-profit, much like our own association. That text was originally written by a volunteer working there at the time.
In any case, it’s a good thing you spoke up about the change; it’ll help prevent others from being misled...
Matthew Taylor6 said:slyseal28, thanks to you as well. I honestly can't say who you think I'm writing this for. Regardless, I wish nothing but the absolute best for you, that person in your life, and your whole family.
I actually started posting here because of my husband. Through this community, I met Angela Wright and a few others, and together we founded an Association called For a New Day, dedicated to those battling cancer, along with their families and friends. We do our best to support people who find themselves walking the same difficult path we did; we try to push for systemic changes and spread vital information for patients and their loved ones. It's a constant effort, really... and we just hold onto the hope that some things will actually change for the better.
Matthew Taylor6 said:I just can't face treatment anymore. The idea of dragging myself to hospitals feels impossible. I have zero drive left to push through this. I’ve even started skipping my meds because I simply don't have the energy to care. It’s only when the pain hits a level that becomes truly unbearable that I make a quiet promise to myself to try and manage things before everything spirals even further out of control.
My family... they don't know. Honestly, I can't find a single good reason to tell them, let alone figure out how to actually say it.
We were actually discussing the choice to stop treatment at our support group recently... and we all agreed that walking away is a valid decision that every patient has the right to make. We also agreed that you can't judge anyone unless you've walked a mile in their shoes...
That said, I still firmly believe—deep down—that there is value in fighting until the very end, both for your own sake and for the people who love you and rely on you.
And besides, you never, ever know what might happen next...
Take a look at this link
It might actually be worth reaching out to the support group...
Maria Fox said:I also have a suggestion for the association: maybe it would be helpful to have a single, centralized list of all the facilities that actually have this kind of equipment available.
I searched through your website, but I couldn't find anything listed there.
That’s a great suggestion, truly, but we’re a pretty small group and quite frankly, we just can't keep up with everything on our own... if you wouldn't mind putting that list together yourself, we would be more than happy to publish it for everyone. 🙂
Aaron Hill44 said:Does anyone honestly believe that hospital administrators don't know how long people are waiting for radiation, surgery, or basic screenings!?! It’s a fallacy to claim the issue is just patients being too timid to complain. The problem is significantly larger, and its name is a corrupt system.
I filed my complaints both verbally and in writing regarding my radiation appointment, and it was all for nothing. The only explanation I received was that I had to wait because there were "more urgent cases." And I waited three months. Three months! Just think about that.
The waiting lists exist precisely so the healthcare system can operate on a basis of bribes and various "connections." If you have the right contact, you can get any exam done immediately without a single day of delay; if you have the cash, you simply go private. Everyone knows how the game is played.
On one hand, we are stuck with a corrupt system, and on the other, we have patients trying to navigate it, along with an increasing number of advocacy groups that are powerless to change anything meaningful—in fact, their very existence seems to inadvertently uphold the status quo.
Things will only continue to deteriorate until the entire system eventually collapses under its own weight. Until then, it’s every man for himself.
I didn't say the administrators aren't aware. However, you have to file those complaints to create a paper trail, ensuring there is proof of whether the delay in radiation is actually justified. You should have sent correspondence to the department head, the director, the Secretary of Health and Human Services, and even the media. Waiting three months for radiation is catastrophic, but try doing a quick search on news portals—you'll see how little coverage this issue actually gets. Far too little.
As for the advocacy groups, saying they support the status quo is a pretty harsh thing to say. The real issue is that many patients join these organizations but never actually participate. Our group is run by just three dedicated activists, with a few members chipping in occasionally. But when we organize a rally or a booth—how many people show up? A shameful amount. And I’m not just talking about the patients themselves, whose absences are often understandably due to illness or treatment; I am talking about their families and friends. Where are they when it matters???
Angela Wright said:My dear, what you’re saying there is only partially correct.
The real issue here lies with the people who stay silent, lurking in the shadows and complaining anonymously. They seem to operate under this unspoken assumption that non-profits—which, let’s be honest, are usually just a tiny handful of dedicated enthusiasts and tireless fighters—should step up and fight their battles for them. It’s almost as if they expect these organizations to champion their rights while simultaneously demanding total anonymity. When activists actually try to identify who is being affected to build a real case, these people want to remain ghosts. It’s a frustrating dynamic to navigate.
Given the sheer inertia of patients today, all this talk about "rights" feels utterly hollow. Things aren't just stagnating; they're deteriorating by the day. People sit comfortably in their warm homes, lulled into a false sense of security by the grey monotony of their own lives, essentially waiting for someone else to step up and fight their battles for them. But that’s not how the world works. You don't win wars by sitting on the sidelines, and you certainly don't solve problems by letting others take the hits. In this life, nothing is ever truly guaranteed—not even our most fundamental human rights. Those things don't exist as permanent fixtures; they only exist because we show up every single day to fight for them.
And from that, I dare to conclude that... We have exactly the kind of healthcare system, the kind of Secretary, and the kind of administration we deserve—the very one our own attitudes and apathy have allowed to take root.
I find myself agreeing. In our experience over the last month or so, we’ve had families calling us up, desperate because they're being told they have to wait indefinitely for radiation treatments, asking if there's any way we can step in and help. It’s heartbreaking. When we suggest that they either need to file a formal grievance or go straight to the Chief of Oncology at the MD Anderson Cancer Center to demand answers, they just shut down. They retreat. Honestly, what are we even supposed to do? I feel like I’ve become numb to the whole thing by now, and that realization is absolutely terrifying. 👎
Maria Fox said:The question—I’m hoping someone can help me sort this out
My mother needs a mammogram, an ultrasound, and an abdominal ultrasound. She's currently undergoing treatment at a major cancer center (for colon cancer) and does most of her testing there.
She's supposed to have a mammogram every year, but when she tried to schedule it, they told her it was too early. Now that she's actually showed up, they're telling her there are no openings until next year, even though her follow-up should be in November.
What I really need to know is where else in Washington, D.C. can we get a mammogram and ultrasound covered by Medicare?
We already called:
Nemetov, Diagnostic Institute 2000, and the Johns Hopkins equivalent—all denied.
We couldn't get through to Mayo Clinic, Mount Sinai, or St. Jude's (just a secretary picks up).
When we call around, they just tell us to show up with a referral and they'll "see if there's space."😕
If I were in your shoes, I'd call the Department of Health and Human Services and lodge a complaint about their useless hotline. They love to talk big about how people shouldn't have to wait for screenings and how healthcare reform isn't affecting accessibility...
It also wouldn't hurt to register through their centralized scheduling system.
Robin Martinez712 said:I figured I’d jump in here and share my own story too.
About three and a half years ago, I had surgery for colon cancer. Despite all the screenings, things were missed, my colon perforated, and I ended up fighting sepsis.
The initial surgery went okay, but because of the sepsis, the wound opened up, leaving me with five long months of healing involving dressing changes every other day. After that, I went through six cycles of chemo, which I actually handled quite well.
Now, some metastases have shown up in my liver. Fortunately, they’re small and, according to my surgeon, still operable. Does anyone have recommendations for specific drugs or types of chemotherapy I should discuss with my doctors once this next surgery is behind me?
Physically and mentally, I'm holding steady. I'm certainly not thrilled about heading back under the knife, but I refuse to let this little, sneaky bastard break me.
I'm based out of Indianapolis, and I’m more than willing to help—whether it's just talking things through or any other way I can manage—to anyone who might need a bit of support.
Let's take this thing down
you'll find a bit more information here...
briskbison27 said:She was given Dexamethasone to reduce the brain swelling.
She thinks it’s Sutent. Honestly, she isn't really someone you can count on for the unvarnished truth right now.
Regarding the brain metastases, we've reached an agreement with the oncologist to take some time before the next appointment to decide whether or not to proceed with radiation.
The kidney tumor metastases aren't going away; they're just going to shrivel up.
Sutent is off the table because it causes the blood vessels near the tumors to rupture and bleed, which is a risk we simply cannot take.
Is there anything else we can even do at this stage?
She came home from the hospital in a terrible mental state, though she seems stable for the moment.
If we tell her the full extent of what's happening with her brain and she decides to go through with radiation, it feels like the beginning of the end.
I'm at a loss for what comes next.
Actually, it might be worth reaching out to a psycho-oncologist. Our friends over at the Food pantry have access to specialists like that, much like the folks at the All for Her association.
briskbison27 said:Is it actually true that you can't get Sutent if there are brain metastases present?
Regrettably, it’s the truth:
Sutent is indicated for first-line monotherapy in patients with metastatic clear cell renal cell carcinoma. The specific criteria for its use are quite rigid: an ECOG performance status of 0-1, no presence of CNS metastases, AST and ALT levels under three times the upper limit of normal, and creatinine clearance within twice the upper limit of normal. Treatment typically kicks off at 50 mg per day. After two cycles, a mandatory clinical and diagnostic review is required to evaluate both the tumor response and how well the patient is tolerating the drug. You can only continue treatment if there's a positive response—meaning complete remission, partial remission, or stable disease—until the disease progresses. In practice, this treatment is approved by the insurance provider upon the recommendation of the Hospital Formulary Committee, following a proposal from either an internist oncologist or a radiation oncology specialist.
Jonathan Sanchez3 said:I called a private medical transport service to check prices, for example, from Thorn to Rib......$87
Our doctor isn't incompetent at all; she’s actually quite excellent... My dad has been on patches since they found bone metastases... Currently, his dose has been at 125 mg over the last few days... On top of that, he's taking Ketoral... He was also given Sevredol, but it made him feel terrible—he couldn't breathe properly, it felt heavy in his lungs... Yesterday, our doctor even gave him 600 mg of Brufen, but after taking it, the pain didn't subside at all... So we eventually put him in the car and drove him to the ER at Rib, where they just left him sitting in a wheelchair in some little room, in agony, for a good hour. After that, they finally gave him two doses of morphine and Tramal... Even then, he said the pain wasn't letting up, so once we got home, I gave him more Brufen and Ketoral... Only then did he start feeling better... Today he can actually walk, whereas yesterday morning he couldn't even move in bed... We went to see the oncologist today to try and get him admitted for hospital care and palliative radiation therapy... But his regular oncologist isn't there, and the doctor covering for her was just dismissive... They told us to have him contact his own doctor on Monday... but then they mentioned she doesn't return until June 1st... so we're stuck waiting until she gets back.
Today, the infusion from yesterday and the morphine seem to be working, but tomorrow or the day after, when that wears off, the whole cycle will just repeat itself... and I honestly don't know how to help him through any of this.
Try calling one of the pain management clinics. In my experience, a specialist anesthesiologist might be able to provide much better relief. You can find a list of clinics, including their addresses and contact information, at this link.
I’m inclined to agree with gentletiger46 🙂.
Nancy Hernandez43—you’re comparing grassroots "right to the city" movements to patient advocacy groups! It’s a complete false equivalence. Believe me, if patients or their families actually stood up and publicly backed these patient advocacy organizations, the entire landscape would shift overnight. Look at what happened when we had just one patient with enough backbone to speak up, paired with a single doctor, and managed to force an increase in limits and one-time financial aid for the oncology department in San Francisco. If that can happen, it proves that real change is possible, even in the middle of a recession.