Posts by Angela Wright

Grace Ross20 said:Dear Ivanica, thank you so much, truly.
Please, just tell me—what if they tell me this isn't just edema, but that the tumor itself has progressed? I've been reading threads about Glioblastoma and I understand what edema is, but I don't know how to tell if the edema is the issue or the actual tumor itself? If that makes any sense.

P.S. He's currently in oncology at the Mayo Clinic; I'm heading up there after 2:00 PM to talk to the doctor.

Tell them to show you the MRI so they can prove it's nothing more than that. 😉
With edema, it’s a rule: it happens because of the tumor. It doesn't just appear out of thin air. They started radiation, which caused the edema to swell up. They'll likely give him Mannitol and Decadron for sure. And demand a new CT scan at the very least. With a tumor this invasive, progression is inevitable, and the edema growth is just a matter of scale. Regardless, they're going to need imaging; heaven forbid they end up needing a lumbar puncture.
Just so you aren't caught off guard, some patients have a shunt installed—basically a little tube used to drain CSF into the stomach. And that stays in permanently.
Insist on speaking with both the neurologist and the neurosurgeon. This oncologist can't handle this alone right now.

Grace Ross20 said:Dad finally starts his treatment—chemo and radiation—tomorrow.
The thing is, he took a massive dive overnight. He can't even pull on his pants; he’s basically collapsing, can barely speak, and just spends his time cursing everything in sight.
I honestly don't see how someone in this state can handle radiation. Is there any chance he could turn a corner, or should I stop hoping?
I just can't wrap my head around how things went south this fast in only a few days. 😢

Call 911 right now and get him to an emergency neurology ward to stabilize him. The edema caused by the tumor is spiraling out of control, and his intracranial pressure is spiking hard against his brain. If you don't get aggressive anti-edema therapy started immediately, those episodes are going to get worse until he slips into a coma. There is absolutely no way he's ready for radiation; it'll just fuel the swelling and they won't be able to start the treatment.
He needs to be in the hospital ASAP so they can administer IV Mannitol and high doses of Decadron. They might even need to perform a CSF drainage via puncture (it's called stereotactic surgery) if the meds don't do the trick. My mom went through this exact nightmare, and we literally had to get down on our knees and beg the surgeons to do it. She went in on a gurney in a coma and was walking again 30 minutes later. Only then would she have been stable enough for radiation.

Harold Harris8 said:Or maybe someone can point me in the right direction if I can't find this kind of info here?

I remember a woman on this forum whose mother was given only a few months to live due to ovarian cancer back home. They moved her over here to the States, and the woman ended up living another solid 10 years.
Get in touch with the hospital directly via email. Tell them you’re looking into treatment options there and ask exactly what the requirements are. You'll likely need to have all medical records translated into English, but they’ll probably insist on doing their own evaluations anyway—which might include repeating a pathology biopsy. You should be able to pick up the physical copies of those reports from the pathology department at the main hospital.
Good luck!

Grace Ross20 said:It looks like I finally managed to talk him into starting treatment soon.
Now I'm wondering, while he's undergoing treatment, I’m planning to see Dr. Chudy for a second opinion. Does that sequence make sense—chemo plus radiation followed by a potential surgery?
Usually, it’s always surgery first, then chemo and radiation...

They’ll run radiation combined with Temodar for 30 days, followed by a month-long break. After that, they perform a follow-up MRI. If there's a positive response to the therapy, they move on to five cycles of Temodar, taken five days at a time. Temodar is administered orally.
As for whether they'll consider surgery after that follow-up MRI, that will likely be the deciding moment. In that scenario, once the surgery is done, they would continue with the Temodar therapy.
That is the standard protocol for Glioblastoma.

Grace Ross20 said:Alright, I'm seeing Chudy this Tuesday, and the surgery could be an amazing opportunity.
I’m just trying to figure out how the billing works at that clinic in Germany. I see they require some kind of insurance—will my American insurance cover any of this? What are the prices looking like, and is there any way to get financial assistance from anyone?

I hate having to ask all these questions here; it's not because I'm lazy, it's just that finding actual information on any of this is incredibly difficult. If anyone already knows the drill...

Medicare will cover the treatment, but only if you can get three of our local doctors to sign off stating that it's absolutely necessary and that we simply can't perform it here in the States. Those opinions then go before a Medicare board for approval or denial. It's a whole process, and honestly, most people end up paying for everything out of pocket first and then waiting to get reimbursed by Medicare later.
In reality, getting that covered is a massive uphill battle. Plan on having to fund this yourself. You might want to look into humanitarian aid or try asking them for a discount. It's a fight.

Look, regarding radiation—once you get it done, that’s pretty much it. With Glioblastoma, the protocol is standard and basically identical everywhere, unless you're looking at proton therapy or maybe Gamma Knife/CyberKnife, provided the tumor size and location actually allow for it.
The entire head gets irradiated to hit that maximum dose.
When it comes to Glioblastoma, the best prognosis goes to those who undergo surgery. People who manage to survive long-term do so by living from one checkup to the next, getting an MRI every four months. The second there's any sign of recurrence, they go back in for surgery. That’s how they manage to pull through for years.
I would push for Munich and start radiation simultaneously—hopefully fast, God willing. Time is a luxury we don't have.

Terry Lopez18, you need to toughen up. God knows I get how you feel, but you have to steel yourself and deal with this whole load of crap that comes with a diagnosis. Stand your ground every time someone gets rude and shut them down properly. It’s actually quite satisfying when you’re one step ahead of them; like when a colleague tries to patronize you and you just crack back that you're a fashion designer, like me, for example. 😂 I’ve constantly fought back against more medical staff, and quite successfully too. One nurse at the Mayo Clinic once took issue with me because I was the only one in the entire hospital holding the keys to the oncology pharmacy; she ended up leaving for Cathedral Hill early because she had a mass to attend to, while my old man had missed his dose of Temodar for the next morning, so he had to rush out at dawn just to make sure she took her meds on time.
And then there was the one on her ward who gave me a series of Mannitol concentrations that were totally off from what was prescribed, and then proceeded to lecture me like I was an idiot, claiming that 20% Mannitol in a 1L bag was the same as 40% in a 0.5L bag (I'm calculating the concentration in my head right now, I don't remember the exact numbers, but the logic is obvious).
Then there’s the outpatient clinic located in a basement—you're sitting there dealing with a diagnosis like this, and every few minutes they wheel someone covered in a sheet past you on their way to the pathology department from oncology. It’s incredibly tasteless.
Honestly, I could write a book about it.

Grace Ross20 said:Henry did the assessment at the Mayo Clinic. He was assigned to Dr. Mishir Krpan, who claims she signed off on everything and the medication is ready, but things have stalled at the radiology department.
They keep blowing me off, telling me there are over 90 people ahead of us and that children are waiting too. Honestly, that sounds terrifying. I respect everyone else's struggles, but I highly doubt there are actually that many emergencies equal to my Dad's situation right now. Most of those people have already had surgery and are just waiting for radiation, but he hasn't even started treatment yet.

Thanks, I’m going to look into that clinic in Germany.

It’s the truth—there’s a chronic shortage of equipment, and the stuff they do have breaks down constantly.
The real problem is that hundreds of people are suffering and nothing is being done about it! It’s been like this for years!

Like I said before, if you want anything concrete, you’re going to have to look outside the country.

By the way, look up proton beam therapy. There’s a clinic affiliated with the Technical University of Munich that actually uses this equipment and performs the treatment. I’ve shared their contact info on the forum a few times before, but I’ve lost track of those specific posts. Just try searching online or digging through this thread and the Glioblastoma thread.
Honestly, if you aren't using those more advanced methods, treating Glioblastoma here feels incredibly basic—especially when surgery isn't an option. It basically boils down to a desperate attempt to slow things down for maybe six months at most.
I’m telling you this straight, no sugarcoating.
You need to go looking for help elsewhere—look into specialized centers and clinical trials.
If you need a hand with the research or searching online, just let me know.

Grace Ross20 said:Dad hasn't had surgery because the tumor is in a tricky spot, so I honestly don't get why it's been over a month since the Glioblastoma was diagnosed and he still hasn't received any actual help :/

You aren't starting a revolution here. His situation is urgent. Talk to the oncologist first and ask them how to push for more aggressive action and what the deal is with the Temodar I mentioned earlier.
Who performed the surgical assessment and where?

Grace Ross20 said:Can someone please tell me how long your loved ones had to wait for radiation and chemo? Here at the Mayo Clinic, they’re telling me four to six weeks, but I honestly don't know if my Dad has that kind of time. He's getting worse every single day. 😢

Sorry, I can't seem to track down your first post right now... Has Dad had surgery yet? If he has, you really need to wait at least a month between the operation and starting radiation.
Unfortunately, waiting around for radiation is just the reality of the system—it’s been this way for decades. They keep feeding us this line about "triage" where patients like your Dad are supposed to be prioritized, but you should realistically expect him to get his turn within a month. Even so, don't just sit there. You need to consult with his oncologist immediately to see if they should jump straight to Temodar if the wait for radiation drags on. The thing is, Temodar works best when it's paired with radiation. You have to be assertive here. Try being polite first—talk to the clinic director—but if that doesn't work, go straight to the doctor. Tell them you’re going to the media because they haven't taken action. Remind them that we've seen a massive revolution in cancer treatment over the last 20 years, and they shouldn't just sit back and watch people get written off because they failed to start treatment on time.
In that case, I'll reach out and hit you with more details once I have them.

Susan Barnes82 said:They wouldn't operate on my Dad... three massive lesions on the liver... not even Ms. Jadrijevic could change their minds. He cried; he was terrified, just like a little kid. He hadn't even retired yet. In the end, that "inoperable" diagnosis turned out to be a blessing in disguise. He lived for three more years with incredible quality by following the Johanna Budwig diet, even though he used to live for meat and cooked food. He bet everything on life and got three years in return. He wanted more, but the disease wouldn't allow it. I’ll remember him as a fighter—as a man who truly savored a sunset, a good Western, or the sound of a great sirtaki.

I am so sorry, Tyler Rogers3. What you wrote is exactly what haunts me. My mother lived a short life, but she lived it well. There are people who crawl to 100 years old only to die alone and forgotten, never having actually *seen* a sunset or truly *heard* music, even if they spent a thousand days watching and listening.
May they rest in peace in that better place we all hope for.
And you? You will be okay, even if things are never the same again. You will find strength. Let him go with peace in your heart.

neoncyclist792 said:She didn't wake up this morning.

I am so incredibly sorry. Hang in there and stay strong.

neoncyclist792 said:It’s been about three or four months since I was on here looking for advice for my father-in-law. Sadly, he passed away just two months after his diagnosis. Now, here I am again, unfortunately too late for any meaningful advice. I’m sitting by my sister's bedside right now, just watching her breathe. Her diagnosis came in a month ago—bronchial cancer with metastases in the brain, lungs, and bones. She’s been at Rockefeller for about 20 days now. At first, she had periods where she was awake for an hour or two, but for the last three days, she’s been sleeping constantly; they’re ramping up the morphine. They say she isn't in pain, that her heart is strong and she’s fighting, but she's struggling. Today she ran a fever, and her hands have started to swell a bit. The doctors won't give us a prognosis. How much longer can someone stay in this state? It is absolutely devastating to watch someone so young go through this.

I am so incredibly sorry. 😢
She’s facing one of the most brutal diagnoses out there, mainly because by the time it’s actually detected, it has usually already sprinted ahead. People sometimes call it the "100-day cancer" because that’s often the average survival window.
She is definitely in the terminal phase, and she won't be able to hold on like this for much longer. We’re talking weeks, maybe even days. Eventually, the light just goes out. Just be there for her as much as humanly possible. Talk to her about the beautiful memories you all shared. Tell her how much she means to you, tell her you love her, and reassure her that everything is okay—tell her she’ll be okay so she doesn't have to be afraid.
I am wishing peace to you, to her, and to everyone surrounding her.

Rachel Williams said:Dear Angela Wright, I don't post much here, but I read this place religiously. You actually shared something similar with someone else once before, and I remember reading it back when my mom was first diagnosed with Stage IV metastatic lung adenocarcinoma two years ago. It was incredibly hard to wrap my head around and actually put into practice at first, but now, more than two years later, I can honestly say this is some of the best advice anyone can give in these situations. Thank you for writing all this out for us and answering our questions, even though this whole thing became your personal reality a long time ago.

Thank you. You have no idea how much that means to me. I’m still trying to find meaning in everything my mother went through, no matter how strange or senseless it might seem to others. I suppose I’ll keep doing that until the day I die. I jump in and out of all sorts of things in life—most interests fade fast—but this thread I started nearly ten years ago is probably the most constant thing I have left. If nothing else, I stick with it out of pure habit.
If I’ve managed to ease even a fraction of the pain that tore me apart, then it means the world to me.

I get the picture. But if there's one thing I've learned from our story, it's that trying to prep for everything in advance never actually yields results. Honestly, all it does is drain you mentally and emotionally. The best approach is to just deal with things as they unfold, adapt on the fly, and try to maintain some level of inner peace. Respect Dad's decisions. It’s incredibly important to him that he maintains his integrity at this stage, and that's likely what keeps him going.
As for the procedure itself, if it wasn't a viable option for him, they wouldn't have even suggested it. He has a massive chance at extending a high-quality life, and it's honestly encouraging that the doctors haven't given up on him—believe me, if they were going to pull the plug for pragmatic reasons, they would have done it by now. Clearly, they see it as "worth the investment" to put in the effort because they truly see room for improvement.
I’d lean toward being optimistic; after all, whatever happens, only God knows.

Dana Martin87 said:Has anyone here actually dealt with this type of surgery before?

My Dad is scheduled for this exact procedure in just a few days... 😢

I don't have firsthand experience, but I know the late Victor was supposed to go through this based on his posts here, though his overall condition was just too poor at the time.
Honestly, I don't see any downside here, and there's a massive potential upside. If it were me—or heaven forbid, someone close to me—facing this stage of the disease, I’d take that leap without a second thought.
There's also another similar approach involving nanoparticles injected via a glucose contrast solution before being placed in an MRI machine. Under the intense magnetic field, those nanoparticles heat up significantly. Since tumors aggressively pull in glucose, they basically suck the particles right in, and the cells get targeted and literally scorched.
In France, doctors are already using this method to treat brain tumors that were previously considered inoperable.

Grace Ross20 said:Does anyone know for sure which immune boosters are safe to take during chemo and radiation?
My Dad's glioblastoma is inoperable, so this is his treatment plan.
Also, does anyone know if surgery becomes an option if the tumor shrinks due to therapy?
I’d ask the doctors, but trying to pull information out of them feels like pulling teeth...

When you're right in the middle of active treatment, the smartest move is actually to take nothing at all. A lot of these "immune boosters" are essentially heavy-duty antioxidants that mop up free radicals. Here’s the catch: chemo is specifically designed to use those very same free radicals to attack the malignant cells. If you neutralize them with supplements, you might actually be sabotaging the effectiveness of the treatment. Between cycles of Temodar, however, you can definitely use immune boosters to help rebuild and prep the body for the next round. It's best to get these from a pharmacy. Think things like beta-glucan, aloe, or native propolis—but don't overdo it. Stick to no more than three, and make sure they complement each other rather than conflicting. You want a consistent regimen, not a revolving door of different pills. Stick to one strategy for as long as possible.
Go grab the book "Fighting Cancer" by David Servan Schreiber from Planetopia. I can't recommend it enough. He dealt with the exact same diagnosis for nearly 20 years, and he lays out every crucial aspect of the fight, focusing heavily on nutrition, lifestyle, and how to choose supplements wisely.
EDIT: Just realized you already have the book. Stick to the advice inside. Sadly, I didn't get my hands on it until after we lost the battle. I had to learn many of those lessons the hard way. For me, that book is the Holy Bible for fighting cancer.

Nah. Given enough time, it’ll likely just bubble up to the surface on its own.

Let's just hope that the surgery actually managed to get everything out.

Grace Ross20 said:Angela, from what I gathered, you mentioned once that you regret your mom choosing an alternative route instead of sticking to the standard surgery plus chemo/radiation combo.
Which method did you guys actually try, and if you had the chance, what would you do differently now?

I’d insist on a re-operation once the recurrence hits. She initially turned down radiation and chemo right after the first surgery. That was her choice. But when the recurrence showed up right along the surgical incision, they refused to operate again, claiming she had rejected oncological treatment, so they wouldn't—or couldn't—operate a second time. They should have done it, and honestly, she really should have just accepted the radiation and Temodar after that first surgery.
She went to see a bioenergetic healer instead.