brightgardener8 said:Angela Wright, have you heard from the other folks who posted on that Glioblastoma thread (sismis, vpavi16,hal 9000,leny)? I've been catching up on all their posts. It looks like only Nicole Edwards76 and bednkacin have popped up lately. Best,
Honestly, I just haven't had the energy to post until now. Like Angela mentioned, my mom passed away from Glioblastoma last week... exactly one year after her surgery. Guys, even though we lost this fight, I truly hope you guys win yours. If anyone needs anything at all, please reach out... take care
Carol Sanchez2 said:Anyone know a good shop or hair salon that does real human hair wigs? My Mom is going to need one soon and she really wants it to look natural. She tried some synthetic ones and they were a total disaster... Thanks!
We actually picked up a wig for Mom through a breast cancer support group out in San Francisco. Honestly, it’s awesome—looks totally real—and it only cost us about $400 (!!!). Medicare covered half of it, too. Definitely check with your primary care doctor first. You're entitled to a wig, I'm pretty sure about that, you just have to pay the difference if you want something high-end...
Angela Wright, my mom’s tongue is swollen too. Same fungal issues. Here’s what I’m doing: I take a Q-tip, wrap some extra cotton around the end, soak it in some antiseptic or herbal tea—like sage or whatever—and just gently clean her tongue with it. It actually helps... Dad even found an old cologne spray bottle and uses that to mist her tongue. Well, he sprays her with tea, not actual cologne (hopefully he washed the bottle out really well first)...
George Palmer7 What if that neurosurgeon was actually from San Francisco instead of Chicago? This whole story sounds way too familiar to me (been there, done that)... Btw, even though our topics are pretty dark, I gotta say your posts always crack me up.👍 You didn't finish telling us what happened with your sister in the end? Did she get the surgery or is she just gonna be stuck buying autumn pajamas?...
brightgardener8 said:When I posted about people disappearing from the forum a few days ago, I definitely wasn't expecting this flood of bad news... Is there anyone with any good updates????
Angela Wright, hang in there. Can you tell me if your mom was in the hospital or at home during her Temodal + radiation therapy? Were you giving her those supplements we talked about (Propolis, noni...)? Because they just told me today that we can't give Mom anything (specifically, I asked about Beta-glucan). Now I'm just sitting here wondering what on earth we should do... sigh.
I'm staying quiet because, just like you said, I only have bad news to share. Mom hasn't woken up in days. And since the tumor hit her eye area... man, you wouldn't even believe what it looks like (just praying it doesn't pop out). Even though the doctors insisted, we didn't want her stuck in the hospital, so we've been handling her dexamethasone and IVs ourselves at home. The radiation went okay, but after every single cycle of Temodal, she ended up hospitalized because her bone marrow was totally crashing. She didn't even finish chemo because the tumor just went rogue after the 4th cycle, and now she's in this state... she's just a shadow of the woman she was, wasting away and not waking up. Regarding the Beta-glucan, we were actually giving it to her, but a friend of mine who's a pharmacist told me it’s not a good idea to mix it with Medrol. Her explanation was basically that Medrol is an immunosuppressant, while Beta-glucan is an immunostimulant, so combining them might be counterproductive. To make matters worse, it feels like the tumor started spiraling right around the same time we started the Beta-glucan...
rowdyrider11 said:My wife is fighting ovarian cancer. It first showed up two and a half years ago. They removed her left ovary, she did six rounds of chemo, and everything seemed totally fine. But then, about six months ago, the cancer came roaring back with metastases in her pelvis, spine, lungs, and liver. A total disaster... But, obviously, we aren't giving up. She started chemo again. After some initial progress, her markers spiked right after the 4th cycle, and they confirmed it's progressing. Now she’s waiting to start a new regimen with Topotecan; she was on Paclitaxel before. On top of all that, she's just dying from the pain in her pelvis. The doctors and the medical establishment... they're basically saying there's no hope left and I should start preparing myself for the end. But her dad actually gave me a glimmer of hope. He brought over an Aloe arborescens supplement based on a recipe from Father Roman Zaga in Brazil. It comes with his book, "Healing Cancer," which claims there are hundreds of recoveries using this mix of Aloe arborescens, honey, and alcohol. Does anyone here know anything about this Aloe arborescens? Is it actually legit? They pitched it to us as the ultimate key to recovery—our last shot. Apparently, regular Aloe vera is way weaker than this stuff that only grows in Brazil. We've already spent a fortune on everything suggested on this forum and everywhere else. I'm praying to God this works. I'll keep you guys posted on how it goes. The protocol is ten days, one tablespoon three times a day before meals.
Hey slymoose4, Look, I don't doubt you mean well, and honestly, thanks for trying to help—every bit of info helps. But you have to realize that most of us here—whether we’re fighting this ourselves or watching a family member go through it, or even after losing someone—have read hundreds of pages on alternative stuff. A lot of us have actually tried these methods too, only to end up realizing exactly what people were telling us from the start: there IS NO CURE FOR CANCER!!! That’s why all those massive ads claiming a 90% success rate just make us want to roll our eyes... Which patients are they talking about? What kind of cancer? Where are the actual, documented clinical trials? It always boils down to some story like, "John S., a plumber from Berlin, cured himself," etc., etc... When my mom was diagnosed with Glioblastoma multiforme stage IV, I spent two hours straight reading Dr. Breuss's book, and man, it sounds so convincing and logical. But then I spent hours scouring the internet to see if anyone with Glioblastoma actually survived using the Breuss diet. I finally found one girl on an online forum whose mom stuck to the whole diet (I think it was about 44 days, if I remember right), only to die five days later from starvation, exhaustion, and a coma! Then we bought Michael Kushija's book, where everything again sounds totally logical and makes sense. We started with that macrobiotic diet (this was all before chemo), following everything to a T. I was buying only the absolute best stuff from health food stores, and yet, during all those days on the diet, my mom's cancer just kept raging—you could see it clearly on the CT scan just 20 days later. There's no question that sugar and processed junk are total garbage and do us nothing but harm, but what do you say to this: I had a student who spent her entire last year bouncing between hospitals and chemo, even though she lives out in the country and eats mostly homegrown food from her parents' farm? Anyway, if my mom pulls through (she’s in the hospital right now and doing really poorly), I might try giving her that flaxseed oil you mentioned—why not?—but I'm definitely not buying into this 90% cure claim. It's obvious our crappy diet causes a lot of issues, but slymoose4, once cancer starts spreading, especially when we're talking about stage IV cancers, I'm terrified that none of that stuff can actually help. And lastly, yeah, there are definitely people who have survived the worst kinds of tumors, and those stories are what give me the strength to keep going and not lose hope until the very end. When it comes to my mom's situation, I've found survivors online who actually shared their full names, detailed descriptions of their treatments, and even their email addresses so you can reach out with questions. I've contacted some of them, and they replied immediately. EVERY SINGLE ONE OF THEM went through chemotherapy. When it comes to people "cured" by alternative medicine, there are never any real names, just "the plumber from Berlin."
Thanks. Yeah, the last time I drove Mom to the ER (maybe 20 days ago?), they gave her a heavy dose of Medrol and I noticed they administered that mannitol too, but I honestly have no clue what it actually does. She felt a ton better immediately after, but now she’s starting to slip again... so it looks like you were right about that temporary fix. Ugh, I'm at a total loss here. I think I'll try getting her back to the ER... Hang in there, Jane
Jane, did you hear back from Rib? Hey, could you just give me the quick rundown on what mannitol actually is... like, what's the deal with why they prescribe it? best,
Elizabeth Hill48 said:Just don't deal with it... find another OBGYN... there are plenty of sane ones out there. I’ve mostly stuck to private practices because I figured if you pay more, they actually treat you like a human being, but apparently, that's not always the case. Now I'm seeing someone at a non-private clinic and I'm actually happy. The waitlist is about a month and a half. I was in for an ultrasound today. Usually, it takes six weeks just to get results around here, but today he asked if I wanted him to send my samples to a private lab instead, since they partner with this specific outpatient center😕. Obviously, it costs an extra $50. I said sure. The results were ready in five days. I actually had this one experience with a doctor who works at Mount Sinai but also moonlights at a fancy private clinic and has his own practice too... basically, while he was looking over my ultrasound results at that big-name clinic, he started trying to hustle me into getting certain tests done specifically at his private office... he was acting all shady while checking my results, so I asked if something was wrong with them (they were totally fine, anyone could see that)... and then he started making excuses... blah, blah, blah... whatever. Anyway, I'm not stupid, so I started grilling him on which tests and why, and once he realized I hadn't just fallen from Mars, he backed off.
What do you mean "don't deal with it"!!! This is exactly why the whole system in this country is such a mess—because nobody stands up for anything and everyone just takes the path of least resistance. Maybe Dr. Karirani isn't technically breaking any laws, but someone definitely needs to have a word with him or the hospital board.
Honestly, if Angela Wright hadn't started those other threads on this forum, I’d probably still be wandering aimlessly through this total nightmare... Of course, these posts aren't going to magically fix my mom, but they definitely saved my sanity (thanks to those topics Angela kicked off that helped me find my people). Anyway, Sam, I'm pulling for you with everything I've got—go beat that tumor! 🙂
Both my grandmas passed away from cancer. My aunt had surgery years ago and she's doing great now, but my mom... she's fighting a really aggressive one right now.🙂 🙂
Ivanica, you are definitely not being selfish! You’ve given so much to people who don't even know you, let alone to your own mom. Sometimes we just hit a wall and need to pull back and focus on ourselves. We aren't robots... I have this friend whose mother fought cancer for three years before finally losing the battle. This friend literally gave her mom everything she possibly could. All her time (and she has a family of her own to look after), all her love, all her energy, and all her money. She’s drowning in debt because she was paying out of pocket for chemo treatments that weren't covered by Medicare. But then, one day, she called me from the hospital after sitting by her mom's side for days, watching her suffer, and she told me she was just waiting for it to be over... Ivanica, what doesn't break us makes us stronger, and no matter how hard this hits, you're going to come out on the other side tougher than ever. keep your head up 🙂
Ivanic, remember when the doctor told your dad Mom might only have a year left? Well, here’s what my neurologist said when he looked at her brain CT: "This looks like glioblastoma" (I had zero clue what that even was back then). He said he’d call a top neurosurgeon just to see if it made any sense to put her through surgery just to squeeze out a few extra weeks. A FEW WEEKS!!! Those words still ring in my ears... and that was back in May 2006, and Mom is still here, thank God! Then, after the surgery and biopsy, that same neurologist tells us she’s got maybe three months left!!! I can still see me and my brother walking out of that hospital, hugging each other and crying like babies. Later, when we finally met the oncologist, he dropped the statistics on us—saying that in the best-case scenario, she’d have two years. So, here’s the thing: those stats are based on a specific group of patients taking a specific drug during a specific window of time. They aren't meant to cover every single person on this planet fighting this disease. You can find those numbers online in two seconds; we don't need an oncologist throwing them in our faces. What I really want to know is whether there’s ever been any systematic tracking of cancer patients here in the US—like actual long-term data on survival rates and stuff. I’m pretty sure there hasn't been. To make a long story short—since I’m already rambling—when I tearfully asked the oncologist if *really* nobody had ever survived this, he told me about a guy they once showed him on an X-ray who supposedly lived fifteen years after a glioblastoma diagnosis. People, just knowing that someone actually beat the odds gave me the strength to fight. That’s what doctors should be doing—not talking about miracles, just stating the facts. And the fact is, people *do* survive the worst cancers. But they can't tell us that because they simply don't know... since we don't track this kind of long-term data on a national level. Hope I didn't ramble too much... heads up!
northernfox9 said:There’s actually one silver lining in all this mess: science—and real-world experience—has basically proven that the older you get, the slower these tumors tend to move. It's all tied to metabolism. So, theoretically, someone diagnosed in their seventies has a much better shot at outlasting the disease itself.
Wait, what?🤔 From everything I’ve been digging up regarding brain tumors, I actually found the exact opposite... like, younger people supposedly have a slightly better chance at pulling through. Of course, there are always exceptions to every rule. Honestly, if there's one thing I've learned about cancer, it's that rules don't really exist...
Carol Ramirez said:Okay, I actually found the recipe:
Grind up 300g of aloe vera leaves using a meat grinder. Make sure the plant is at least 18 months old and hasn't been watered for at least 5 days before you use it. 700g of guaranteed pure black wine. 250g of chicory (sourced from Frank-Chicago) 400g of honey with honeycomb included Mix 2g of royal jelly and 40g of pollen into that honey. 500g of 96% alcohol.
Mix everything together thoroughly, pour it into a dark bottle, seal it tight, and let it sit in a cool, dark spot for 5 days. After that, strain the liquid and take it according to this schedule: - Week one: a teaspoon three times a day, at least an hour before meals—though two hours is even better. - Week two: bump it up to a slightly larger spoon, or maybe one and a half teaspoons, three times a day, an hour before eating. - After that, just take one tablespoon three times a day, an hour before meals, until it's gone.
You go slow like this so your body can adjust... since this stuff cleanses your system so intensely, things might get a little loose down there. You can use it for 3 months, take a quick break for about 20 days, and then start again.
Carol Ramirez said:Thanks so much for getting back to me and for all the advice!! 😘
I'm making him some fennel tea right now—it’s great for his stomach and helps with his appetite—and the chicken is already simmering in the pot with some veggies. To boost his immunity, he’s taking cod liver oil and this concoction made of aloe vera, chicory, wine, propolis, and who knows what else... I’m reading through that page you linked, and it looks amazing, but I have no clue how to actually get my hands on it. Where can I buy it and what’s the damage? I have a friend in New York who could grab it for me if it’s available at a local pharmacy. Also, does online ordering actually work? Grandpa hasn't had any major side effects yet, besides his hair starting to thin out a bit. No vomiting at all. He’s always been such a powerhouse, physically so strong, so seeing him this broken... it’s just brutal. He barely even has the energy to talk.
Carol Ramirez, sorry! I didn't finish reading the whole thread before I sent my last message, and I just realized the answer to my question was already right there. I always forget the golden rule: read everything from start to finish before posting a question or a comment. Guess I was just moving too fast...