Posts by ironsailor22

granitepilot48 said:--------------

What’s the best approach? I actually found that information myself on the Medicol website—under their section regarding PET/CT scans and how to prepare for the procedure.
I don't believe in esotericism—that’s the very last thing I’d ever bother reading.
Thank you so much—I'm feeling a little more at peace now.

What you read on the Medicol website isn't nonsense—not by a long shot. These instructions need to be followed. Strict adherence is required. It’s not a coincidence—as wanderingcobra76 explained in such thorough detail earlier.

Linda Williams77 said:Everyone keeps telling me to just stop struggling—to let go—but I can't help wondering if I'm just being selfish. Is that it? Am I just a bad person because I want her by my side for as long as possible? I simply miss everything we used to do... the cooking, the little things she did for my boyfriend so he wouldn't go hungry, even those ridiculous trips to shop for kitchenware...
ps—I feel a little lighter now that I've finally said this.

Of course you aren't a bad or selfish person. Anyone who has walked this path knows that feeling—even when the days only bring more pain and suffering, and you start to think death might be the only relief left—we all wanted the same thing.

Karen Torres42 regarding propolis dosages—standard use is two tablets daily for healthy individuals, though it can scale up to six or more for those dealing with illness. It’s best to split the daily dose into two parts, perhaps taking one about an hour before meals. Starting with massive doses seems pointless to me; my suggestion would be to try 2 x 2 tablets a day first, then monitor whether you actually see any results after a while. Also, skip the pharmacy—it’s significantly cheaper if you just call them to order directly. You'll find their number on their website, and a mail carrier will have it at your door within two or three days.
I believe it helps boost immunity and strengthen the body, but I'm not buying into any "miracle cure" claims. It is just one of many mass-market products sold under the guise that they can slow or stop tumor growth—which feels more like a marketing gimmick than reality. Still, I suppose it might be worth trying if nothing else works—if only for the placebo effect of having actually tried something.

Karen Torres42 said:Does anyone have any advice—any real advice—on how to lift my father's spirits? He’s fallen into a deep hole, even though none of the oncologists have actually sat down to talk with him or us yet. We’re trying to reach a doctor, but we just get bounced from one hospital to another; there's always some bureaucratic hurdle. I'm terrified we won't even make it to treatment, and he's already so mentally fragile. I get this feeling that others around him are just contributing to his exhaustion—as if all these visits are merely a way to say goodbye before the end. And we haven't even had a real conversation with a specialist. Maybe this is the end, but I refuse to give up without a fight—I just don't know how to force him to fight. How do I make him realize he isn't alone in this struggle?
Has anyone used native propolis? Can he take it before he gets official advice from the oncologist, and if so, for how long?
P.S. We don't even know the full extent of the metastases yet. There is some in his shoulder and near the lung lining. He had the primary tumor removed nine years ago.
Thanks for any advice.

Regarding native propolis—you don't need an oncologist's permission for that. It's something anyone can take, healthy or not, since it supports the entire system. My mother used it for a while to help her cope with chemo, though she eventually stopped when things took a turn for the worse and it felt futile.
As for his mental state—don't expect much help from the doctors there. You'll have to be the one to motivate him through sheer willpower and positive energy. I know it's an uphill battle, but you have to try.

Kimberly Wright Asks:
I can’t stand this sickness either—it's absolutely miserable. 🙂
I miss my mother terribly. She’s in my dreams almost every night—it's becoming a routine. I can't shake this constant, nagging thought about everything she had to endure. How much more could one person possibly take? 🙂 🙂 It’s devastating. You have to wonder—how much did she truly want to hold on? It’s just crushing to think about that level of despair—that realization that there was simply no way out and no one could reach her. 🙂

This will haunt me for as long as I live. All those lofty stories about how "no one should die hungry, thirsty, or in pain" are nothing more than empty rhetoric—our healthcare system does absolutely nothing to actually help people. If we have reached a point where individuals are effectively cut off from any meaningful medical care or support, why not just legalize euthanasia? But then again, perhaps that’s asking too much from a system this decayed and hypocritical.

Azzura, please accept my deepest condolences. A death this sudden—it’s an extra layer of shock on top of all the existing pain and grief.
My mother fought this for three years, passing away slowly over several months in intense pain. I was living with the daily, inevitable reality of her end... yet even now, four months later, I still can't quite wrap my head around the fact that she's gone. I find myself still waiting for her to walk through the front door.

mistybadger55 said:As promised, here is my mother’s story:

Back in 2005, she noticed a black spot—a mole—on her left lower leg just above the ankle. It wasn't there before; it was about the size of a fingernail. There were several bluish spots surrounding it, but since my mom deals with thrombosis in that leg, she didn't think much of it—it just looked like bulging veins. It wasn't until that spot started bleeding that she went to her GP, who referred her to a dermatologist and eventually to the MD Anderson Cancer Center, where they excised the area. I want to give a shout-out to Dr. NOL there.
When she went in to get her results, the doctor who usually handles her case was away on vacation. He was replaced by another fellow—I don't recall his name yet, but I'll find out and post it—who proved himself to be completely incompetent. He misread the pathology entirely, telling her everything was fine because it was just a balloon nevus (a blister-like mole). Even the dermatologist at the medical center was equally useless; she seemed overly relieved that the results appeared "good."
The only one who showed any actual intelligence was a rural GP who mentioned that the results didn't look right to her.
At the three-month follow-up, Dr. NOL practically grabbed his head when he saw what his colleague had reported... long story short, my mother ended up in surgery. They had to perform a wide excision of the mole along with the surrounding tissue. No signs were found in the lymph nodes under the knee or in the groin. I don't have the paperwork handy, but at that point, it was Stage 1, though they were concerned about several small satellite spots.
Following that, Mom underwent six cycles of DTIC chemotherapy, as they claimed there was no other option. For the next five or six years, she went in for checkups every four months, where they only checked tumor markers—which remained normal. In the meantime, she also dealt with breast cancer, which was caught early and removed along with the lymph nodes; she also underwent targeted radiation for that area. Throughout this whole period, her lower leg continued to deteriorate—spots would appear and disappear, some staying while others vanished. A few months ago, one started bleeding again; we did regular dressings, but it wouldn't heal. Two months ago, she underwent surgery at the medical center to remove the area with wide, deep margins, and they performed a skin graft from her thigh. Despite how horrific it looked, it healed well—which is nothing short of a miracle given her venous thrombosis.
Two weeks ago, Mom felt a lump in her groin—and a few months back, she felt one in her lower back—but she didn't tell anyone at the time.
Diagnosis: lymph node metastases. Tumor markers are normal, and an abdominal CT showed nothing.
Dr. Thomas at the institute has once again prescribed DTIC; he says there are no other choices. She starts June 6th.
So, I know the situation is grim. I know chemotherapy isn't particularly effective, I know there isn't an adequate treatment, and there are no clinical trials available. I'm going to buy her some beta-glucan to hopefully help her endure this—whatever happens, happens.
Any advice or experiences you might have would be welcome.

Your mother's story isn't an exception; it's more of a rule. I know plenty of cases where doctors simply misread a report and caused massive, irreparable damage to a patient. I haven't heard of anyone being held accountable for this in America, which doesn't surprise me—given that hospital directors and heads of health institutions are appointed by the government, political loyalty is the primary criterion, while professionalism is often seen as a nuisance.

Kimberly Wright said:my mother passed away yesterday

My deepest condolences. I know words don't offer much comfort right now.🙂

Kimberly Wright said:😢

I can't find a single redeeming quality in any of this. 🤷
I've run into a mountain of inconsistencies and sheer incompetence throughout this entire ordeal.

1. You can't even get "caregiver leave" to look after a sick parent.
2. At the medical center, if you're picking someone up from chemo or radiation, you’re looking at a minimum two-hour wait.
3. Information regarding diagnoses, treatment plans, or patient rights? You usually pick that up from friends, neighbors, or the internet—unless you happen to know exactly which technical questions to hammer into the doctors or staff.
4. Patient attention seems strictly proportional to the depth of your pockets and how many "gifts" you use to grease the wheels.
5. Despite my mother paying her dues into Medicare and supplemental insurance for years, she isn't receiving adequate palliative care. She was hospitalized for ten days, and even though she was still on antibiotics, they just sent her home. The only other option was a hospital in a small town in Ohio—which I won't even dignify with a comment.
6. As for nursing homes... 🙄 my mother lasted exactly one week in a place that boasts "high-quality service." It was so high-quality that they didn't bother giving her water to drink until 2 PM one day—and keep in mind, she is immobile. They forgot her medication, nobody checked if she had actually eaten anything all day, and they didn't bother changing or washing her once during that entire week.

It is a disgrace that palliative care has been virtually erased from our healthcare system, leaving terminal patients to be entirely dependent on their families. Managing pain, administering IVs, providing necessary equipment like medical beds, transport carts, or anti-decubitus mattresses—these are things home care simply cannot handle.
The home health service is an absolute farce. We had a visiting nurse who was essentially a contractor for a private clinic in the suburbs. All she did was wipe my mother's face and hands with a wet cloth. When I insisted on an IV because Mom hadn't eaten or drunk anything for days, she just waved me off dismissively. And when my poor mother was hiccuping incessantly day and night due to electrolyte imbalances, the nurse just forced a couple of ounces of fluid into her mouth via syringe and called it a day. In short: zero meaningful help from such a disorganized home care setup.
In America, there isn't a single private institution that provides quality care for patients in this condition. Even though prices for nursing homes range from five or six thousand dollars up to ten thousand at the first private hospice in a suburb outside of New Jersey, unfortunately, there is no oversight regarding the quality of service or staff expertise. They can do whatever they want. In fact, by stripping us of the right to a dignified death, the state has essentially allowed these facilities to enrich themselves—which, frankly, is the only thing about this whole situation that seems to be working efficiently.

Chloe Sullivan17 said:My mom just got home from the hospital because my grandmother ended up back there again. Both of us are left feeling pretty confused by the diagnostic report 😕—so if anyone can help clarify things, I’d really appreciate it. 🙂

If someone is diagnosed with metastases on both the right and left sides of the brain, causing swelling on one side—is that how it works? Is it actually possible for metastases on one side to recede or disappear while the other side remains swollen and shows no visible signs of metastasis?

Currently, none of the results (including the MRI) show any tumors or metastases, yet the doctors are insisting it could still have been metastatic disease, even if it isn't showing up on the scans.

It's difficult to give a definitive answer to your question. What I do know is that micrometastases exist—the kind that current diagnostic tools simply can't detect. Because of that, no one can say for certain whether they are present or not. My advice? You really need to hash this out directly with the doctors.

stormynomad20 said:So, my mother passed away today. Even though I’m not much of a believer, I hope her soul has found some peace.

My deepest condolences. Her struggles are over—may there be some comfort in knowing she is finally at rest.

Angela Wright, I am so incredibly sorry to hear that. Sending you and the little ones nothing but strength and good vibes—fingers crossed for a really speedy recovery.

slyseal28 said:What you wrote actually stung—I think you’re missing just how much these advocacy groups are doing (and not just ours), so I felt compelled to respond.

It’s clear I missed quite a bit, so to correct my own oversight, I sat down to watch the program Open.
I realize CNN is a major network, but it was frankly unprofessional to frame a show like this by pitting you—as the sole representative for patients (with the occasional nod from John Doe)—against four unscrupulous, dishonest, and hypocritical bureaucrats and politicians. They spent the whole time pivoting away from the actual topic, essentially creating a smokescreen to mask their own incompetence and lack of accountability. Meanwhile, the Secretary keeps cutting you off relentlessly, refusing to let you even present an argument. His lack of basic decorum isn't surprising, but what *is* shocking is the host; despite being personally connected to the subject after her own recent cancer battle, she showed zero empathy, denying you the right to a final word. In the end, the episode served its purpose perfectly: it barely mentioned patient rights, instead choosing to lionize the Secretary and the Director—who should probably be applauded for "solving" a crisis they manufactured themselves.
Watching all of this only reinforced my belief in how rotten the system truly is. It proves why we need to unite our forces against this mess—because in this supposed democracy of ours, organized pressure is the only way to get anything done. How one actually achieves that kind of unity, given the temperament of Americans, is anyone's guess. It seems everything here starts and ends with a few brave individuals, while the masses are only moved by football games, rock concerts, or seasonal clearance sales.

redridge13 Asks:
I have one "legal" question—though I suspect this thread is actually the best place to pose it. 🤷

Have any of you actually tapped into your PTO to care for a seriously ill family member? And more importantly—what kind of "proof" did your employer demand regarding the illness or your relationship to them?

Issues like this are supposed to be governed by a collective bargaining agreement—though, frankly, I haven’t heard of a single one that actually lays out those specific terms. Usually, you just get a few days off for things like a death in the family or moving house; some companies might even throw in time for continuing education, but that’s about the extent of it. Beyond that, an employer has to be a signatory to a collective bargaining agreement to begin with—which, unfortunately, describes a huge portion of employers here in America.

Angela Wright Asks:
Since I represent an association of this kind, I will respond specifically to your bolded point:
It’s because people like you stay silent—refusing to stand behind these "aggressive" outbursts. We were branded a scandalous association, a mere "mercenary for Big Pharma," time and again, simply because we lobbied for the right to access the best available therapies for specific diagnoses. Usually, the patients—or rather, their family members—just kept quiet to avoid making waves. People need to grasp that an association is made up of civil society; and civil society consists of all those "little guys" being trampled by the system. An association is an organization—a channel—that uses its structure to facilitate the realization of rights and actual change.
That’s just the mindset we have here. Once a situation blows over, people rarely step up to help someone else facing the exact same struggle—mostly because they figure if nobody was there for them when they were down, why should they bother being there for anyone else?
Just me and my own. Three. To my active colleagues—and by the way, I’ve been stuck in the hospital for two months now with my preemie, handing out brochures to oncology patients even though my own ordeal ended a long time ago—you intergalactic fools... it's clear we are nothing more than a passive, inert mass of people in their eyes. A bunch of slugs, essentially.
Here is the link to our association's site—feel free to reach out with suggestions on how we should proceed, sign up, and help organize some actual, concrete action. My colleagues and I are waiting for you—and believe me, we’re eager to get moving.
Regarding the Hospice situation—you seem to be misinformed. Opening a facility like that isn't just about laying bricks. You have to actually educate the people who will staff a palliative care unit. Palliative medicine is its own distinct medical specialty—just like curative or preventive medicine—and a mere medical degree isn't enough; you need specific specialization. That is the absolute prerequisite for establishing such an institution. Buying land and building a house? That’s the easy part. You can secure funding for construction through various grants, but expertise—that's something you actually have to acquire.

First off— Angela Wright Congratulations on the little one—wishing you both a smooth trip back home as soon as possible!
Regarding the claims you made in this post—I won't even bother debating them, as they simply aren't true.
I am all too familiar with the tactics used by you and various other advocacy groups. I’ll take this moment to commend one of your earliest efforts—that petition demanding equal treatment rights for those suffering from rare diseases. In my view, that was the right direction. However, since then, you haven't truly challenged the system itself. You have simply become like every other organizer out there—hosting galas and fashion shows to raise funds rather than actually working to change the status quo.
When it comes to hospice care, I happen to be far too well-informed to sit through any fairy tales regarding specialization requirements for these facilities. Seriously—what kind of palliative medicine credentials does the staff actually hold at that private hospice in Villi Brezovica, or even in various sanatoriums and nursing homes? Who exactly issued their operating licenses? And why has a major hospital in Chicago repeatedly backed out of converting a wing into a dedicated hospice unit? Furthermore, why does Medicare hire people from private sanatoriums for home healthcare—people who can barely manage half the job they are being handsomely paid to do?
It’s obvious to everyone here what’s actually going on.

Kimberly Wright said:By what standard does my mother have less right to that bed—to having this suffering eased—than anyone else? Hasn't she paid her share into the healthcare system just like everyone else? Shouldn't help be available when it's actually needed? Why is it acceptable to provide aid to addicts, yet not to terminal patients? Who even has the authority to decide whose health deserves care and whose doesn't?
It’s appalling. 🤮
I am telling you, Mom isn't eating because of the pain—no one can eat. In the 21st century, my mother is going to die of malnutrition. 😢

Right now, we are combining Durogesic patches, Tramadol drops, and once a day a home health nurse comes to give her a Tramal injection. That Tramal is the only thing still somewhat managing the pain. But I can see from the last few days that even that isn't enough anymore, and there is simply no option for a nurse to visit twice a day.
Where do we go from here? 🤷

Those are exactly the questions someone in this country ought to be answering!
Of course, those responsible for our healthcare system—and indeed the entire nation—have brought us to this state, and they choose to play dumb and deaf. I fail to understand why none of the major patient advocacy groups are reacting or launching a more aggressive campaign to correct this disgrace. It seems obvious they’ve become too comfortable within the system; they benefit from the status quo more than anyone else.
All this talk about hospice has resulted in nothing more than opening a center at the Mayo Clinic designed to train medical staff, while providing zero actual relief to terminal patients. And all of that happened merely to satisfy a requirement for joining the European Union. It is a disgrace that we have private hospice facilities charging $110 per day, while the government is incapable of opening a single public hospice in the entire country.
Since it feels like everyone in this country just does whatever they want, I couldn't even get a nurse to come for my mother's Tramal injections; I had to call emergency services and argue with them just to get them to show up and do something. When the pain spikes, they are the only option left—and they have to respond, regardless of how hard they try to brush you off over the phone.

stormynomad20 said:Zlatica, I just wanted to ask—did your mother have metastases only in her bones, or did it spread elsewhere eventually?

It was breast cancer that metastasized solely to the bone. By the time the diagnosis was even made, there were already metastases on the ribs—but as the illness progressed, they spread throughout the entire skeleton. She underwent palliative radiation; for about a month, the pain was somewhat managed, but then it returned with even greater intensity. In the end, it was absolute hell—for her, and for us. She became delirious, hallucinating and screaming from the pain... and there was nothing I could do except pray for her suffering to finally come to an end.

Lisa White54—this whole business with the patches isn't making sense to me either, since I had to return mine to the clinic myself.
When you get a prescription for patches, they hand over two copies—one goes to the pharmacy and the other to the police. They record your ID number on it, which essentially makes whoever picks them up legally responsible for how they're used—or misused. It really makes me wonder: what exactly does the clinic do with returned patches, and who are they actually giving them to?!?

stormynomad20 said:Six years ago, my mother was diagnosed with uterine sarcoma. She underwent surgery followed by chemotherapy, which seemed to work—she stayed in remission for about a year and a half. Then, the back pain returned, leading to more surgery and radiation treatments.
Since then, she’s dealt with excruciating leg pain, which we managed temporarily through homeopathic remedies. She also has a large growth on her head—which her doctor claims isn't concerning—and another on her sternum. About two years ago, before we turned to homeopathy, the doctor gave us a terminal diagnosis. To manage the pain, she used Durogesic patches, but they caused terrible vomiting (though a homeopathic remedy eventually helped stabilize that during the worst period). In the meantime, she underwent another round of radiation. While the constant leg pain and numbness fluctuated, everything took a sharp downward turn after New Year's. A poor-quality X-ray revealed metastases in her spine and neck. For about six months now, she has been in unbearable pain; she has almost no mobility and requires significant assistance from my father and me just to get to the bathroom (she uses a tripod cane). Her right arm hurts, and she is completely exhausted. Her condition deteriorates daily—she even transitioned to adult diapers today. The doctor gently suggested we are reaching the end, though I suspect he missed the mark on the initial terminal prognosis since he wouldn't give us a specific timeline. We consulted a physiatrist who told us her spine is in worse condition than anything he's ever seen. Her primary doctor has essentially given up on both her and us. We have a visiting nurse helping, and my partner's mother has been a hero assisting us. Meanwhile, my father and I are at our breaking point—he’s lost 15 pounds in eighteen months, and I'm working while he is unemployed. My mother’s mental state is dire; she just wants it to be over. She stays bedridden with agonizing back pain—likely metastases in her pelvis and hip as well. I don't know if other vital organs are involved because the doctor refuses to run further tests; he only checked her bloodwork, which looks fine, suggesting a potential chemo round—though he admitted to the nurse he fears it might kill her. Aside from that, she's relatively stable. Does anyone know of a cream to help with the sores from being bedridden? What comes next? How much time is left? Wishing everyone luck in their own battles.

I understand you far too well; I went through something very similar with my mother recently.
She had bone metastases that were incredibly painful, and watching her suffer without being able to help drove me to despair. Everyone just sent me running in circles, yet no one did anything concrete to actually assist her. I am bitter and angry at a healthcare system where patients like this are left to fend for themselves alongside their families. No one should have to die in such agony when modern medicine clearly has the tools to prevent it—it's just that nobody seems to care. It's appalling.
You didn't mention what she's taking for the pain now; my mother was on Durogesic patches the entire time, and the pain remained horrific. From the sudden decline to the end, it was only about two months for her, and it was pure agony.
I wish your mother minimal pain and suffering, and I wish you and your father immense courage and strength. Hang in there.

Robert Grant84 said:That was well said... but did he actually provide any help, or was his presence simply incidental to the situation?

Yes, he helped immensely—I'll carry the memory of his warmth and humanity with me for as long as I live. For my mother, it was a blessing, truly.