Posts by Angela Wright

Emily Edwards19 said:It’s just not an option.....😢 They aren't going to mess around with Gamma Knife; it's spread way too much already.......
The next step is heading straight to the tumor institute...

😢 If she had just gone in the moment she noticed those symptoms.

Kate James38 said:What's the cutoff size for Gamma Knife? Is it anything under 1cm?

superoirna said:Usually, Gamma Knife is used for lesions up to 3 mm, while Cyberknife handles up to 4 mm. In my husband's case, they actually passed on the Gamma radiation because his tumor was 3.8 cm. We opted for Cyberknife instead, and everything is looking good—the tumor has already shrunk down to 2.8 cm.

Reach out to her; her husband went abroad for the Cyberknife treatment.

Emily Edwards19 said:The MRI results aren't looking good.
She’s heading to the Mayo Clinic tomorrow to see if they can try Gamma Knife...

I'm just hoping the target is still small enough for the Gamma Knife to work. If it's feasible, I think that could really buy her some precious time.

Interesting read.

fadedtrucker5 said:My fever finally broke after that Voltren shot. Right now, I'm hovering somewhere between 98.6 and 99.7 degrees. Do I still need to be on antibiotics? I'm asking because my doctor can't seem to give me a straight answer on this one. 🙂

That’s probably a reaction you can manage pretty well with some Voltaren. It’s only when that fever climbs north of 101.3 and refuses to budge that you really need to worry. Still, I’d check in with your oncologist just to be safe. That was exactly the advice I got back when my mom was on Temodar.

A fever climbing above 101.3°F that just won't budge even after taking Tylenol—especially in patients currently undergoing chemo—could be a red flag for an infection. It is absolutely critical to get to the hospital immediately to start antibiotics. If that infection takes hold, it can become fatal quite quickly.

Laura Long79 said:So, they’re getting treatment in the city now, coming all the way from the coast. Look, I get it—there are specialists available and she could be sent for a biopsy, but the issue is that she's flat-out refusing to go. It’s frustrating because I can't exactly call her out on it; she's just so incredibly soft and passive. It's like she's never had anyone in her entire life actually tell her the truth straight to her face. Honestly, I'm just left feeling totally bewildered.🤷 I could go visit someone and try to pick their brain, but honestly, I don't see that being effective. It’s hard to offer any real help when the person isn't even willing to understand themselves.🤷

There’s actually a standard practice where you sit down with a psychologist or psychiatrist, and they give you the blueprint—basically coaching you on how to approach her and what specific topics to bring up. It’s incredibly draining and difficult to pull off, but honestly, it might be the only way to handle it. Another option is bringing someone to visit who has actually survived the same diagnosis; seeing a survivor in person tends to lift people's spirits better than anything else.

Laura Long79 said:Hey 🙂

I could really use some advice here:
I’ve basically lived through this nightmare myself—Non-Hodgkin lymphoma involving the appendix, deep in the pelvis and bladder, followed by chemo, six months of being bedridden, sepsis from a poorly cleaned catheter, and even clinical death. I totally get why people are so frustrated with our doctors; between the ruthless money-grabbing, the arrogance, and nurses who act unprofessional and take their own complexes out on patients—though there are plenty of exceptions 🙂 (I only remember the ones worth remembering). It's been ten years since all that. Anyway, I truly wish everyone here a speedy recovery.

But now, I find myself in a spot where a relative has fallen ill. She isn't originally from around here, so I've been visiting frequently, trying my best to stay positive for her. She has uterine cancer that has spread to the colon—it's in a really uncomfortable spot—and she’s undergoing radiation and chemo. Her mental state, though... it's devastating 😢 I honestly don't know how to help anymore. She hasn't slept a wink in three weeks, she's deeply depressed, and she’s essentially preparing everyone for her death. She's a woman in her prime, 53, so we aren't talking about someone just feeling old. No matter how much I try to encourage positivity, it only lasts while I'm sitting right there; the second I leave after an hour, it's the same story. Maybe I've just become hardened because I went through this myself, so I try to point out that spiraling into negativity doesn't help the physical battle—in fact, it probably makes it worse. So, I was thinking about lending her some "optimistic" book about healing or something along those lines to read.
If anyone has a recommendation for a book, or any advice on how to "distract" her, I would be incredibly grateful because I'm completely out of ideas.

She’s acting like someone at the very end of their life (which is hard, I know, but there are countless cases far more dire than hers), refusing to get out of bed or even take a walk, crying constantly (several times a day, ever since she found out a few months ago), and she can't sleep. To make matters worse, her doctor suggested seeing a psychiatrist, which triggered an even bigger meltdown—she starts sobbing just at the mention of it. Coming from a small town, she seems to think only "crazy people" go to see a shrink. I just don't know what to do. It’s painful to watch a woman destroy herself like this, especially when there might actually be a good outcome ahead if she could just pull it together. If this continues, she’s going to drag me down into depression with her. 😢

Laura Long79, where exactly does the woman live? Here in the States, there are associations that provide psychological support.
Sometimes with people like this, a bit of "shock therapy"—just being brutally honest—actually works. But ideally, you should consult with a psycho-oncologist to get a better grasp of the situation and receive guidance on how to handle her moving forward.
Try to contact Dr. Marijana Braš or Dr. Veljko Đorđević at the Mayo Clinic to set up some consultations regarding this situation.

feralridge3 said:It didn't work because I'm already staring down a second relapse.

So where does that leave you?😢
Did you at least give that alternative route a shot before calling it quits?

Kate James38 said:I get that... I just don't think anything is going to come out of the hospital in Split regarding this. They wouldn't even let me sit down with the head oncology director. They simply don't recognize or accept this kind of off-label use in their practice here...
-it feels like I'm slamming my head against a brick wall...
-I'm going to try reaching out to another clinic out of state on Monday to see if they can offer any recommendations.
-but then I have to restart the whole process with the rib—honestly, I'm not even sure how I'd go about that.
Right now, I'm completely lost on the timeline for what comes after radiation before starting chemo.
-all I know is that it's covered by Medicare for glioblastoma, but the oncologist who wrote the prescription for my brother mentioned that while nobody calls it a miracle cure, it's worth a shot since younger patients with grade 2 and 3 tumors are taking it.
-And why wouldn't they? It makes total sense to me that it shows better results for grades 2 and 3, because if you don't catch it there, you're looking at grade 4 anyway.

You need to go loud. Bring in the journalists, patient advocacy groups, the news—you have to be assertive. But listen, you absolutely must have everything I listed in black and white so you can demand straight answers. Tell them you understand the hospital budget is tight and they can't fund off-label treatments, but make it clear that as a family, you are fully prepared to shoulder the costs yourselves. You have to stay on his toes; that’s just how guys like him operate. Show up every single day until they give you an audience. Be a persistent nuisance. There’s no other way.

I just realized I misspoke earlier:
So, Temodar is approved here in the States for both MF glioblastoma and one other indication, but Medicare only covers it for glioblastoma.

Alright, let’s clear the air here first.
Not every brain tumor is cut from the same cloth, which means treatment protocols vary wildly. Even when dealing with the exact same type of tumor, there's a massive difference between using a drug as a first-line defense versus a second-line option. Plus, you have to account for physician autonomy—doctors have the professional discretion to decide what works best for a specific patient's unique situation.
Regarding Temodar, clinical studies show it hits hardest when paired with radiation, but specifically for MF glioblastoma. While Temodar is FDA-approved and on the standard list for glioblastoma, it isn't registered for other types, like ganglioglioma. Getting a drug registered is a long, grueling marathon run by big pharma companies. Once they get approval for the indications that make them the most money, they rarely bother fighting the uphill battle for other uses, even if there are studies proving it works just as well, if not better. From what I’ve gathered through my contacts with oncologists we work with, it isn't registered for those other indications anywhere in the world. However, that doesn't mean the science isn't there. If studies confirm efficacy for a different indication, doctors can prescribe it "off-label." This is a completely standard and acceptable medical practice worldwide—in fact, that’s exactly what Kate James38 has already secured, and you should view that as a major advantage! In the US, Medicare typically only covers drugs that are officially registered for a specific indication.
The stuff you mentioned about them throwing death rates and side effects in your face? That’s nonsense. It’s just a way to deflect when they're backed into a corner. They don't want to take these cases to a formal review board because they don't want to be held accountable—they'd rather not have to pull funding for treatment out of their own meager hospital budgets. And sure, there are side effects, but they aren't any worse than what you'd see with any other chemo regimen.
In my opinion, the smartest move is to demand a written opinion from Rib regarding the treatment plan, as well as a second opinion from a top-tier global center, something like Dana Farber. Do your own research on the diagnosis; if you find a study confirming efficacy (and there definitely are), print everything out. Take that stack of papers to the clinic and put the pressure on. Don't hold back. Cite the standard practice of off-label usage.
If you still hit a wall after that and feel you need to take more decisive action, reach out to our association so we can map out a strategy.

Unfortunately, Temodar isn't some magic wand that guarantees permanent remission. When a relapse happens, it happens. That’s just the nature of this disease, and frankly, modern medicine hasn't found a definitive answer yet.

Kate James38, I'm traveling right now so I'm just tapping away on my phone. As soon as I have my laptop in front of me, I'll get back to you—either later tonight or first thing tomorrow morning.

Kate James38 said:I need some help here. We just went through surgery on June 20th—a resection of the right frontal lobe. The final diagnosis came back as a Grade 2 oligoastrocytoma and a Grade 3 oligodendroglioma. 😢 We went in for the radiation session on August 29th. However, the latest MRI with spectroscopy from eight months ago shows that there’s still some residue present—specifically in the left temporal lobe and the corpus callosum—with measurements reaching about 0.5 mm.
Do I need to schedule another MRI with spectroscopy once the radiation is finished? And if so, should I go straight back to Henry at the Mayo Clinic for the Gamma Knife procedure, or does he need to be cleared by a different neurosurgeon first? We’ve been bouncing between hospitals lately—we're coming from a suburban neighborhood where there isn't an oncology department, and now we're down in Miami for the radiation. It’s my younger brother we're fighting for; he just finished 30g.
I have another question: what’s the standard procedure for getting chemotherapy? Is it just the usual routine, or do they actually send out samples for external testing?
They don't handle things that way in Miami, and honestly, it’s creating a bit of a headache for me. Miami follows a very specific, standard protocol when it comes to prescribing medication, yet the folks over at the Mayo Clinic are already bringing up Temozolomide.
I’m asking for some help here... Honestly, I don't trust much of what they're telling us anymore, especially after all these endless walks we've been taking with my guy while he's so sick. 😢 It’s already been 73 days since radiation therapy actually kicked off—which is way beyond the standard one-month window—and honestly, I just want to get these samples sent off to an outside institute. If anyone out there knows how to make that happen or can point me in the right direction, please let me know. I really need some help here.
In any way possible... 😢(

Henry is a neurosurgeon, and per standard protocol, you’ll need a follow-up MRI with contrast once the radiation is finished. If that scan shows something that needs to be taken out via Gamma Knife, I’d say go for it—don't hesitate. You can also look into CyberKnife out there; it's used for those larger tumors that the Gamma Knife just isn't equipped to handle.
The medical protocols used in Miami are identical to those mandated by Medicare. If doctors in Washington, D.C. recommend Temozolomide as the standard treatment, you can bet the teams in Miami are following that exact same playbook. These tumors tend to be pretty sensitive to radiation, so there’s a real possibility that once the radiation is finished, the lesions won't even show up on scans anymore. Ultimately, the oncologist who referred the patient for radiation is the one running the show—they’re the ones deciding exactly how the rest of the treatment is going to go.
Because determining the exact grade of a brain tumor is notoriously difficult—and since these cases are so rare that even a PhD finding can be misread—I strongly suggest you take action. Go to the pathology department at the hospital where the boy had his surgery and request the tissue samples (the actual microscope slides in the box). Send those over to a world-class center of excellence for a second opinion on the PhD findings. It’s my best advice. Dr. Sidney Farber Check out this institute in the States. You can actually go right onto their website, submit an inquiry, and get a quote for the exact service you need—which isn't even that pricey, usually around $500 depending on the specifics. You just ship the samples via FedEx, and once they finish the analysis, they send everything back to you along with the official report. My advice? Don't just ask them to read the PhD findings. Go a step further and ask for their professional opinion on the treatment plan and if there are any ongoing clinical trials the kid could join. They are incredibly thorough.

Nicholas Wright56 said:The only thing that really confused me was when I saw my gynecologist regarding a breast ultrasound—I honestly thought that would fall under gynecology, but she mentioned that the referral actually has to come from a primary care doctor, and she also suggested it's best to have one for the first time once you're over 35.

It’s probably the same way for hormone testing; I don't think a general practitioner can order those, so it would likely have to be a specialist like a gynecologist...

So, I guess that's just how the whole process functions.

An OBGYN isn't exactly the authority on early detection and breast cancer prevention. Ultrasounds are recommended starting in your 20s, and you should be getting one every single year! Just get them done and have your GP write the referrals for it.

As for the hormone testing... honestly, I don't see why a family practitioner wouldn't be able to handle that. 🤷I just don't get it.

Nicholas Wright56 said:I suppose everyone’s experience varies depending on their specific healthcare providers... In my case, my dentist referred me directly to a periodontist rather than just a general practitioner. I once tried to see a specialist through Medicare by acting a bit hurried—you know, pretending I was in a massive rush—but that didn't quite work out as I had hoped. It seems like you can get whatever you need through private practice, though of course, that comes with the usual out-of-pocket costs.

I suppose I was sent on quite a bit of a wild goose chase regarding my referrals initially. My primary care physician provided me with a referral for a surgeon, but they wouldn't actually let me schedule an appointment because they felt she couldn't pinpoint the exact issue without an internist's input first. So, I had to get a referral for an internist instead, and after bouncing around between different offices for a while, I finally managed to see the surgeon. I guess I definitely took the long way around getting there!

That's just how the system works here.
Whether it's a dentist, a gynecologist, or a family practitioner, they all fall under primary care. By any shred of common sense, it should make sense for a dentist to write referrals for dental work, a gynecologist for OBGYN issues, and for everything else, you go to your GP.

Nicholas Wright56 said:Just to make sure I've summarized this correctly—if I were looking to get a second opinion from a different dentist, I would need to request that referral from my current dentist rather than my primary care doctor... that is what I was trying to clarify regarding dental services.

In this country, your primary care physician handles all the referrals for specialist exams, like if you need to see someone at a dental school clinic. If you just want a second opinion from another dentist, it usually doesn't require much more than an exam and maybe some X-rays, which you probably already have.
Michael Bennett recently ran into issues because his regular doctor was on vacation and the covering physician was only seeing emergencies. He just walked into a different dentist's office, they gave him a standard exam, and told him what they thought. No referral required.

wearymaker592 said:I can't speak to how things work in other countries, but finding a second opinion online isn't an issue—there are plenty of websites available for that.

Actually, it’s not that simple, because more often than not, you need direct communication with your attending physician. Getting a Second opinion isn't as effortless as people make it out to be. It usually involves repeating a whole battery of tests, demanding meticulously translated medical records, and so on.
You have to distinguish between someone just giving advice and providing a formal Second opinion. A Second opinion is a legitimate medical service—and quite often an entire package of services—that comes with its own price tag.

Patients certainly have the right to seek a second opinion, but there’s no legal definition for what actually constitutes one—so, just like the doctor mentioned, Medicare doesn't officially cover it.
That said, nobody is stopping her from writing a referral to a specialist at whatever facility the patient chooses. It doesn't strictly need to be labeled "second opinion" on the paperwork. Honestly, it all comes down to being resourceful and having a little bit of goodwill.

Emily Edwards19 said:I was over at a friend's place earlier, and honestly, she’s in a really rough spot. This headache just won't quit—it's been constant for seven or eight days now. She’s going through a mountain of medication, but nothing seems to be touching the pain. She spends most of her time lying down, mostly keeping her eyes squeezed shut because that’s the only way to get any relief. Despite all that, she keeps saying "thank God" and stays positive, so we spent quite a bit of time just talking. It’s tough to watch, though; she has to force herself to eat, someone basically has to feed her, and she can't even make it to the bathroom on her own.
I’ll be heading over to see her tomorrow, too.

So, I've got blood work scheduled for this Thursday, and then the brain MRI is happening on Friday.
Her oncologist mentioned that they might try using Gamma Knife to deal with the issue in her brain... so now she’s holding onto a bit of hope.
Basically, all she wants is for that headache to stop. That's her absolute priority right now... she says if this doesn't let up, she isn't going to make it to the finish line.
I’m really hoping they can pull off something positive for her during this week in Washington, D.C.!🙂

Forgive my choice of words, but that oncologist is an absolute powerhouse!🙂
Your friend’s headache isn't just a random pain; it's happening because she has edema—basically, a buildup of cerebrospinal fluid that's putting direct pressure on her brain, causing that intracranial pressure. To get that pressure down and actually kill the pain, the only way out is through therapy using Mannitol and a corticosteroid like Dexamethasone. Even an oncologist knows that all too well. Let’s just hope things don't take a turn for the worse before Friday, because if she gets too unstable for an MRI, we're stuck. Honestly, it’s a real possibility. When my mom started dealing with those headaches, they didn't let up for three straight weeks. Then, out of nowhere, one side of her mouth just dropped—looking exactly like a stroke—and she started dragging her leg whenever she tried to walk.
Normally, you handle situations like this by jumping in the car and rushing someone straight to the ER at a major neurological center. That’s where they can run a CT scan and even an MRI immediately to figure out what's going on. And just get rid of that pain once and for all! Tell her straight: she has the power to end this pain right now if she actually decides to take action.
And for heaven's sake, why are we even talking about the Gamma Knife yet? She doesn't even know if there's a target to hit! If she does find one, every single day counts. Listen, we’re talking about a difference of just a few millimeters here—but in the world of Gamma Knife, those tiny fractions change everything when it comes to how effectively they can actually fix the problem.