Posts by Angela Wright

Noah Gomez3 said:I find myself wondering all the time—there are people who pass away when they truly deserve to live, and then there are those who walk around breathing every day but really deserve to die. It’s a famous quote or something, I don't know who said it.😢

Look, everyone lives and everyone dies. It isn't some cosmic meritocracy based on who's good or bad; it’s just the raw nature of existence and everything that comes along with it.

loneridge80 said:I just don't get Ivana. If Dr. Mlikotic says she’s my choice—and she is, since my entire family sees him—then who exactly at the Social Security Administration is qualified to step in and tell me otherwise?

Honestly, I wouldn't know... my guess is they have these specific quotas in place, and if one facility hits its limit while another is sitting around short on patients, they just shuffle people over there to balance things out.
Go ahead and file a formal complaint. Lean hard on your right to choose your own doctor—you shouldn't be forced to settle for some random practitioner you’ve never even heard of. It makes zero sense to just hand you a stranger and call it a day. You should also reach out to Dr. Mlikotic and get his take on how to handle this situation.
Don't back down—get on the phones and start dialing right now!

loneridge80 said:My dear Angela Wright

My sister is in the ER right now because she took a turn for the worse and can barely stay upright. They’ve already started her on an IV—the exact one her primary care doctor insisted she didn't need—and she's headed for an emergency cranial CT scan with contrast.

We already filed the paperwork to switch her over to a different specialist (right in her own neighborhood!!), but that request is still stuck somewhere within Medicare or whatever bureaucracy they call it, and nothing has been resolved yet.

It’s enough to drive you insane!!!

Ugh...😢
Alright, let's take a breath and try to be rational here.
Your sister is in the hospital, and they are going to stabilize her. She collapsed because of the edema. They’ll likely give her Manit and dexamethasone. I suspect they’ll want to run more imaging immediately. Since Manit and steroids kick in fast, her condition should start improving shortly. They might even implant that pump I mentioned to you before. Make sure you ask about everything—write down every single question at home before you get there!
You absolutely have to call Medicare. Demand to speak with someone who can actually tell you the status of that transfer request. We are talking about a critically ill person who cannot afford to wait while her current doctor fails to provide adequate care. Tell them the advocacy group advised you to call personally; there’s no point in us trying to navigate this mess when you need to make it clear that you intend to file a formal complaint against the physician.
And file that report against the doctor! I know you don't have the energy for it right now, but if you don't, she'll just keep taking it out on the next cancer patient who walks through that door.

loneridge80 said:Listen, Angela Wright,

I actually took your advice and sent my niece to see her primary care physician. I’d heard some rumors about this doctor before, but this latest stunt is just beyond the pale.

The doctor told her she could get an IV infusion once her chemo is finished?! As if she needs that right now—I have no idea what kind of logic she used to reach that conclusion since she hasn't even seen the patient! And then, if she really wants help, she suggested going to a local Community Health Center in her neighborhood?! As if she can just wander around dragging all those medical files from place to place.

It gets worse. This same doctor looked at the lumps on her back and dismissed them as nothing more than fatty tissue that any surgeon could just snip out—even though they were actually melanoma metastases. When she was dealing with constant vomiting, the doctor brushed it off as a simple bacterial issue, leaving her to suffer through two months of nausea until she finally went to a private specialist for a real exam.

What kind of doctor is this? What kind of person prays to the same God as her?!

I feel like this is headed for a disaster because I am honestly at my wit's end.

File a complaint with the Social Security Administration. Send a formal letter to Dr. Mary Hrastinski (Supervision and Oversight) at Margaretska 3, or via fax at 01/4806 308. Make sure you include the doctor's full name, the name of the clinic where she works, and provide a brief, clear explanation of exactly what happened and all the ways she failed your sister.
I just got off the phone with Medicare, and they were incredibly helpful; they genuinely care about providing quality service to us, so they will definitely take this seriously.
Now, just go find a different primary care physician and transfer your sister over to them. You'll get the necessary paperwork to fill out, and once that's done, you won't ever have to deal with that woman again—not even a word or a look—because the transfer is handled through the system.
Stop letting this eat at you. Just get it done.

Michelle Fisher said:Starting my first round of DTIC chemo—whatever that actually means. 😕The other two know exactly what's going on, and she’s certain she didn't receive it. What’s the actual difference here?

The key thing to wrap your head around is that we're talking about biologics here—these aren't your standard, old-school chemotherapy drugs.

dustymarlin10 said:I’m with you on that, obviously... But if you’re going to threaten to go to the press, you need some heavy-hitting organization backing you up—something like yours—where people actually listen when they speak.
An individual standing alone doesn't stand a chance against the machine.

Check out this association

and this one-this group is even more active, though they aren't really big on social media

dustymarlin10 said:You usually won't see your discharge papers until about ten days after you've actually left the hospital. Pretty much. The discharge date listed on my hospital paperwork is a complete lie—it’s dated two or three days after I actually walked out those doors.
How do you actually prove someone wrong?
Besides, there's no way they’re being so incredibly careless that they'd actually charge a bedridden patient a West Coast management fee. They go through the motions of selecting "assessments" or "monitoring" sessions, or they pick out medications that a patient actually needs but never receives. Take my own situation, for example: I didn't want any pain meds after my meniscus surgery—so who’s to blame when they still billed me for them like clockwork?
They say it’s hard to fight battles when you're up against someone with horns. I know people can be spineless—just like you always say—but it isn't all that simple. Trying to wage war against an entire system as a single individual is a grueling, almost impossible task. Especially when you consider how the vultures in power always look out for their own.
Associations like yours are making massive strides. Having direct access to the media and possessing a loud enough voice to actually stand up for the little guy is a game-changer.
Honestly, people working in those kinds of associations should be handed Nobel Prizes just for dealing with the madness.

It’s obvious. You can see exactly how they messed up over there. 😁
Look, if you can secure a court order, everything becomes trackable. You can find the paper trail. For instance, you’ve got family members who can serve as witnesses—people who can swear under oath that you left on a specific date, that they picked you up, and that they drove you straight home. On top of that, I’d bet my life that their billing records will show a charge dated exactly when you physically walked out of those hospital doors.
It doesn't matter what kind of nonsense they try to list on your final paycheck or how long they drag their feet before handing over your severance papers—which, by the way, isn't even standard practice everywhere—there are certain things they simply cannot prove. And let me tell you, threatening to take them to the press is a massive mistake on their part. It’s a move that will backfire spectacularly on the executive suite, especially now that everyone is starting to label them as nothing more than puppets for Big Pharma.
A collection of individuals forms the backbone of a functional system—civil society. It’s designed to be a powerhouse that drives progress through organizations like ours. But honestly, most Americans still don't quite grasp how this works. Because people don't understand the value of organized advocacy, associations find themselves struggling to fight battles using nothing but hearsay and rumors. It’s like trying to win a gunfight with empty casings; it's useless, and it keeps us all stuck exactly where we started.😳

ruggedeagle95 said:Can someone tell me if it's actually possible to "catch" some kind of sickness? I’m incredibly sensitive about hygiene, and it really gets under my skin when my brother spends all day playing outside and then comes inside without washing his hands, only to start messing with my makeup, hairbrushes, and stuff. I'm worried I might pick up some nasty bug... maybe it sounds silly, but it doesn't feel that way to me.🤷

You absolutely can.😳
Hepatitis A is no joke—it's literally nicknamed the "dirty hands" disease. And honestly, there's a whole laundry list of other things you could pick up.
You need to get that kid under control. Grab him some hand sanitizer from a CVS or something; maybe if it's right there, he'll actually bother using it.
In the meantime, just wash your own hands more often until he grows up a bit.

dustymarlin10 said:Angela, I am right there with you.
The real issue is whether pushing back actually yields any results—I mean, how do you prove they didn't just withhold it?
And how can I prove that my pain meds weren't actually administered, but somehow just vanished into thin air?
I tried filing a formal complaint regarding the bill (not paying out of pocket, obviously, but through my Medicare coverage), but it was a total dead end.

There is such a thing as a discharge summary which everyone must receive when leaving a hospital, and it details every single thing that happened during a patient's stay. If a person is mobile, it’s pretty hard for the hospital to justify the bill when the records don't show a nurse had to help them to the bathroom, or that they needed an ingrown toenail treated, or provided urine samples for testing, and so on.
Believe me, if you push the right buttons, you absolutely get results. The problem is that people have no backbone; instead of fighting, they just head home to cry and moan about how the whole system is a complete disaster.
There are a few people on this forum who can testify to their own battles. Casey Palmer5, for instance, though her situation was much more grueling.

Michelle Fisher said:It looks like there actually is a However, from what I can tell, they aren't enrolling anyone who has already undergone chemotherapy 😢 I'm guessing they're being pretty rigid about those requirements. That said, I'll definitely have my mom give them a call to see if they can make an exception. You never know 🤷

I have no idea how I missed that 🤷

Regarding the part in bold—did she receive chemo, or was it Alpha or Interleukin 2?
There’s a massive difference!

dustymarlin10 said:I went through the exact same thing when I had meniscus surgery.
The bill was packed with so many painkillers they practically wanted me on a constant drip of narcotics. On top of that, they listed diagnostic tests that never actually happened.
In my book, a bill like that boils down to two things: hospital staff pocketing meds (on a smaller scale) and the hospital itself inflating costs just to squeeze more money out of Medicare.

There couldn't be a truer statement. When you look at that gray area where they charge for vague assessments of a patient's psych-social or motor skills—basically billing for how many times they wiped someone's ass—you're looking at a massive slush fund used to plug budget holes. They use those funds to charge for everything under the sun: from toilet paper, needles, and gloves to salaries, and especially those astronomical cancer drugs that can run tens of thousands of dollars per dose for something like colon cancer, which apparently is everywhere, "thank God."
I get why they'd try to screw over Medicare when that's the entity forcing their hand, but man, screwing over the actual people paying into the system who know damn well what was or wasn't done is a different story. 🙄
If I were them, I’d lean on them hard. And if that fails, I'd call them out for being cowards who won't stand up to such a rigged system. If they want to whine about it, they can go ahead and cry until tomorrow morning. 😳

Michelle Fisher said:That’s basically where my head is at too. I mentioned him to my mom, and she said she’d actually heard of him before—apparently, my grandmother left quite a little fortune behind with him when she passed from stomach cancer, and he didn't do a single thing to help her.

What’s your take on immunotherapy over in Germany? From what I can gather, they’re a fully registered medical institution there...

And thank you so much for that detailed breakdown on preventative screenings. I’m sure it’ll be helpful for more than just me.

I know someone who tried that immunotherapy route, but it didn't exactly yield the results they were hoping for. That said, there are zero guarantees in this business. It's worth a shot if you want.
If I were in your shoes, I would put all my energy into looking into clinical trials.
Click here to see which studies are currently open for malignant melanoma. If you manage to get enrolled, the pharmaceutical company picks up the tab for the treatment, and if the drug proves effective, they usually keep providing it even after the study wraps up.
You can track all the active studies in America here
. Right now, there aren't any open trials recruiting new melanoma patients here in the States.

Did you get an official termination letter?
It needs to include a complete breakdown of everything you were responsible for.
Get yourself a solid lawyer and have them draft a formal notice to the hospital—ideally someone who specializes in medical malpractice or healthcare law—and let's see how quickly this gets resolved.
I actually know someone who won't even take a meeting until they've seen the memorandum in their hands.

Michelle Fisher said:Hi everyone!

My mother has been fighting metastatic melanoma for years now. I brought this up in another thread here, and one member suggested I look into immunotherapy options in Germany on this specific thread and that I should definitely get my mom in front of Dr. Soltysik. This thread is massive, but I know every single day counts, so please—if you can answer a few questions or just point me toward a helpful link, I’d really appreciate it.

1) What does immunotherapy cost in Germany? I realize there isn't a simple answer since it depends on so many variables, but I need at least a rough ballpark so I know what we're looking at.

2) If I understood correctly, the immunotherapy cycle lasts three weeks. Where is the patient expected to stay during that time? Are they admitted to a hospital, or am I responsible for finding local accommodations?

3) I'm having a hard time figuring out what kind of practice Dr. Soltysik actually runs. Is he a private general practitioner or something else? If so, what kind of price range are we talking about?

I hope I've grasped the basics correctly. I'm praying there's a kind soul out there who can provide some foundational info so I have a starting point for my research. I have to present a fully fleshed-out plan to my mother, otherwise she won't even consider it. It looks like she's starting to lose her will to fight. 😢

Feel free to shoot me a PM if that's easier...

To be perfectly blunt, I haven't had a single shred of positive experience with any "alternative" practitioners.
The fact that Dr. Soltysik isn't registered with any official medical boards speaks volumes on its own. In the US, you cannot legally practice medicine unless you are a registered healthcare provider. Anyone operating outside those regulations is breaking the law.

Michelle Fisher said:I have one more question, separate from my mom's melanoma. This might be off-topic, but I feel like I'll get the most sensible answers here. I think most people fighting cancer wish they had caught it earlier. For healthy people, what screenings, how often, and where do you recommend we go for preventative checkups? I feel like everyone is a bit smarter about this now because of everything we've been through...

Unfortunately, you can't prevent or catch every single type of malignancy early. That's just reality. However, the vast majority of common cancers actually *can* be prevented or detected while they are still manageable.
Colorectal cancer—anyone over 50 absolutely needs to get a stool test. You don't need to see blood with the naked eye for there to be an issue. Also, anyone dealing with hemorrhoids really ought to get checked out with a colonoscopy, since those issues can sometimes mask or lead to tumors.
Breast cancer—start doing monthly self-exams in your 20s. Get an ultrasound once a year, and once you hit 45, move to an annual mammogram.
Cervical cancer—an annual visit to the gynecologist is non-negotiable, including Pap smears and any necessary swabs.
Lung cancer—smokers between the ages of 40 and 60 should undergo chest X-rays, spirometry, sputum cytology to look for early changes in the bronchial mucosa, and carbon monoxide testing via peripheral blood. (In many parts of the US, these types of screenings are organized through public health initiatives).
Prostate cancer—men over 50 should include a digital rectal exam as part of their regular physical.
Stomach and esophageal cancer—people who suffer from chronic acid reflux (GERD), Helicobacter pylori infections, heartburn, or gastritis should definitely schedule a gastroscopy.
Melanoma—keep a close eye on your moles; if you notice anything weird, see a doctor immediately. People with fair skin should also schedule periodic dermatologist visits, coordinated through their primary care physician.
Testicular cancer—perform regular self-exams and report any unusual lumps to a doctor right away.

Most of these screenings are covered by insurance, and for colorectal and breast cancer specifically, there are ongoing national prevention and screening programs active across the US.
Your primary care physician is your best resource for all this info, as are various cancer advocacy organizations.

Susan Hayes25 said:Angela, what you’ve accomplished—and what you continue to do—is honestly breathtaking. I find it hard to put into words. Even though we haven't actually met, I think about you often because everything you've built and everything you still do is just so incredibly special. Seriously, hats off to you. I catch myself wondering if I’d ever have the strength to start an initiative like yours, especially since there’s nothing like it here—no support networks, no specialized counseling centers (when I tried looking into things, they just pointed me toward standard CBT), but nobody is actually tackling this specific issue head-on. Honestly? I don't think I'd have the stamina for it. At night, I can't even fall asleep because I'm so chronically exhausted. My head throbbed from pure fatigue, so I end up taking a natural sleep aid, then some Advil for the pain, and finally Lexapro just so I can pass out enough to wake up the next morning for our radiation appointments. I used to think I was a strong person, but lately, it feels like I don't even have enough energy left for myself (though I always have enough for my mom). But you? You consistently find the strength to offer kind words, recommendations, advice for all of us, and to keep this association going... I truly admire you, and I know I'm certainly not the only one who feels grateful.

Honey, I didn't start this whole movement by myself. I'm just one small cog in a much larger machine that has finally started moving and changing things.
No one expects a single person to carry the entire weight on their shoulders, but someone has to step up and lead the charge. Try finding some like-minded people to rally behind; that's always the best way to start.

Susan Hayes25 said:But here’s the real kicker: how am I supposed to trust someone who clearly has no clue what they're doing? They don't seem to know the dosages, the timing, when to start, or how long the treatment should last—they just act like none of it matters. It feels like they're making every decision on the fly, and I'm left wondering how I can possibly trust them or what my next move should be. And if I try to get a second opinion from another oncologist, it feels like the whole medical establishment will just turn on me... I honestly don't know what to do.

Total lack of competence and professionalism. Switch doctors immediately.
It’s obviously a brain tumor we're talking about.
All I can say is that right now, I am incredibly grateful for Milinović and for an American healthcare system where Vincristine and CCNU therapy are available as second-line treatments after Temozolomide is used first.
Dear Susan, unfortunately, the mess you've run into is exactly why we need organized civil society groups. That’s why I decided to start this association by posting on this very thread, building it alongside other forum members. Honestly, it was the best and craziest thing I’ve ever done for myself—and I say that without any false modesty—but also for my country and the people living in it.
I really hope someone finds that same spark of defiance and strength in our neighboring nations.

Nancy Ward16 said:I’ve actually been lurking on these forums for two years, but I never quite found the nerve to jump in and post. My husband was battling kidney cancer, and during his surgery, they discovered metastases in his lungs. In an instant, my entire world just collapsed because, up until that moment, he had been the picture of health. We managed to get him access to Sutent, even though it wasn't officially on the approved list yet, and we fought with everything we had until last year, about nine months ago, when the drug just stopped working. It started with fluid in the lungs and ended with tumors in the brain. On February 12th, my love passed away—he was only 42. We tried everything: macrobiotics, bioenergy healers, Megamin, countless supplements, seeing specialists at Mayo Clinic, you name it—but nothing worked. The disease was simply more powerful than he was, and he was a truly strong, positive man right until the very end. I just want to say that none of it mattered; I'm angry at Sutent and I'm angry at everything else, because the suffering was just too much for him and for all of us. Please forgive the long post; I just felt this overwhelming need to tell someone.

Dear Nancy Ward16,
I know the pain is unbearable, and that anger is just as heavy... unfortunately, as you said yourself, the disease was simply stronger. All we can do is try to adapt to this new reality, accept the facts, and somehow find a way to move forward. It’s incredibly hard, I know, but there isn't any other way.
If you are living in Washington, D.C., I would strongly suggest looking into grief support groups through the Krijesnica counseling center. It might help you process everything tearing at your heart right now so you can eventually begin to heal.

However, I don't want to discourage anyone with your experience, because
there are people who have seen real improvements and extended lives thanks to Sutent. There is a woman who led the charge to get Sutent listed on the approved medication registry, and she is living a very high-quality life today. Sutnet worked exceptionally well for her—so much so that her metastases actually regressed.
Sadly, it works for some and not for others. We are still just stumbling around in the foyer of individualized cancer therapy. One day—not far off in the future—every single person will have their own tailored treatment: a specific protocol, custom dosages, everything customized to the individual.

Nancy Hernandez43 said:Thanks, I'll try to be more specific once my PET/CT results come back.

Just a heads up, PET scans can throw false positives when it comes to those little nodules, so if anything shows up, they’ll probably jump straight to a biopsy first.

"Transferring" medical records is just standard procedure now because every single bit of patient data is digitized.
All you really have to do is visit your new doctor and fill out an intake form. Once they submit the request through the system, your digital file moves from your old doctor's database straight into theirs.
The days of physically lugging paper files from one clinic to another are dead and gone.

casualorca25, I don't think there are any actual hurdles left, other than your new doctor being too slammed with appointments to let you switch your primary care physician whenever you feel like it.