Huge thanks to everyone who helped us navigate the medical system and understand our rights regarding patient suffering. I truly appreciate you all. I see new people joining this forum and reading this thread, and honestly, it breaks my heart. It’s sad because it means there are always new people facing this reality. But, if you or someone in your family is dealing with a tumor, cancer, or anything similar, I think coming here is the right move. Personally, I’ve learned things here I never would have found elsewhere, and more importantly, I found support. I finally got answers to questions that were eating at me. What mattered most was talking to people who actually *get it*—people who understand that messy mix of emotions, fears, restlessness, pain, helplessness, and doubt. My dad is currently undergoing radiation and chemo every six weeks. He’s handling it remarkably well; no nausea or major side effects from the chemo, and knock on wood, his appetite is great. He’s constantly asking what we brought him to eat when we visit, and he’s always asking for cigarettes because he’s such a heavy smoker... just always asking for his smokes and a cappuccino... that's my guy! The other day, I actually had a good laugh. I gave him a kiss on the head and said, "You're my favorite, Dad," and he just looks at me and goes: "Well, how many others do you have for me to be the favorite?" He’s always loved to joke around. Even now, he hasn't lost that sense of humor or his positive outlook, which is absolutely vital.
I want to tell everyone—since I see so many people writing about it—don't get bogged down by medical prognoses or doctors' assumptions about how much time someone has left. Every person is an individual. Every case is different, even if the diagnosis looks the same on paper; you can't just put people into neat little boxes. Those prognoses can be incredibly counterproductive because they can strip away a person's will to keep fighting. This thread is proof that so many people defy those doctor's predictions. Let them be our hope, our faith, and our inspiration to keep pushing forward.
Best wishes to everyone. Stay brave and take on the new day!
Listen, everyone, Does anyone know if my father is legally entitled to an escort in the ambulance when he’s being transferred from one facility to another? He’s immobile—his entire left side is paralyzed—so common sense tells me he should have medical staff accompanying him. It feels completely unacceptable to do otherwise. What if he has a crisis during the trip? The problem is, I haven't received a single straight answer from his doctors or any medical professionals. I’ve had to hunt everything down myself on this Forum or through Google. Once I actually armed myself with some facts, the doctors started getting annoyed with me, which is ridiculous. If anyone knows the specific laws regarding our rights here, please let me know. Everyone I talk to says something different... Last time they moved him from one hospital to another, they tried to deny him an escort altogether. I had to make a massive scene right there in the hallway before they finally agreed to do it properly.
cosmicsurfer7 said:Thanks. It looks like you've been searching everywhere for answers too. Maybe Rife's generator helped him, but did you ever try giving him papaya capsules? Here’s the situation: no surgery yet. They’re using radiation and chemo to shrink things down first, then hopefully surgery in phase two. If you don't mind me asking, what was the protocol for your father? When did he start his regimen, and how does it actually work?
He didn't use papaya capsules—honestly, we'd never even heard of them. He is currently taking Cat's Claw (Uncaria tomentosa), shark cartilage, and various vitamins and minerals to boost his immunity and circulation. As for his condition, things aren't great right now. We're waiting on radiation, which was finally scheduled after the machine in Indianapolis was out of order for so long. He isn't in any shape to travel to Washington, D.C., and he's also undergoing chemo every six weeks. It's tough, but it will get better. Check your PM.
My dad has always had a massive sense of humor; he's always been the life of the party and such a cheerful soul. Even now, with everything he's going through, he's cracking jokes and making us laugh... he just keeps everyone around him uplifted. He gives me so much energy and puts a smile back on my face. He reminds me that life really is about the little things, and that no matter how hard it gets, we can always find a reason to smile for our loved ones because they deserve it. If he can find a way to laugh like that while being this sick, I can certainly do a hundred times more for him.
Amanda Miller69, that is wonderful news! Just keep pushing forward!
cosmicsurfer7 said:Good day, everyone! To avoid any useless arguments here, please just head over to www.rosorifeterapija.com where you can find info on PAPAYA tablets—it actually makes a lot of sense.... I recall hearing about those tablets in unofficial medical circles before. Also, it doesn't hurt to search Google for ESSIAC; it might help. I'm still struggling to track down people dealing with Grade II brain astrocytomas....! Kisses to all, stay strong. We're stronger together!!!
I see this page covers quite a bit regarding Rife's generator. My dad used one, and personally, I believe it helped him significantly. However, he wasn't always consistent with its use. The real issue with all these alternative options—as someone else on this forum already pointed out—is that there isn't an "alternative oncologist" who can look at the specific disease, condition, etc., and dictate what works for whom, how long to take it, the intensity, or what to strictly avoid. Instead, we're all just guessing and trying everything without knowing if we're helping or hurting ourselves...
As for the rest, I believe there's some truth to all of it. If my dad were doing better, we'd probably be more open to trying even more. Phoenix,, my dad has a Grade II astrocytoma, so ask whatever you need to know.
cosmicsurfer7 said:I know there are plenty of wonderful people here. I was diagnosed with an astrocytoma on February 29th. The official medical recommendation is chemotherapy and radiation; if those shrink it, then surgery becomes an option. It’s located bilaterally in the frontal lobe, so they don't recommend operating at this stage. Beyond that, we're looking at homeopathy plus a proper diet. When was your father diagnosed, and where is it located? Kisses to everyone!
My dad was diagnosed back in 1998, and he had surgery in June of 1999. Back then, the tumor was right frontobasal, but now—after a recurrence found in December 2006—it's right frontotemporal. After the first surgery, he went through radiation and chemo, though that didn't start until six months later due to severe pressure sores. Now that the recurrence has hit, it isn't operable, but we aren't letting that discourage us or make us fight any less. Honestly, after the initial shock and disbelief we all felt when we found out Dad's cancer had returned, I felt this inexplicable surge of strength. I want to learn everything, read everything, buy everything, and do anything possible to help him. I'm talking about various alternative cancer treatments; we've tried many things and are still using several. I've mentioned some of them in previous posts, but if you need to know anything else, just ask. Personally, I believe diet can be a huge help, especially macrobiotics. There is a great book, Michia Kushia - nutrition against cancer, which I think is well worth reading. I hope the chemo and radiation help shrink your tumor enough to make surgery possible. I believe the chemo and radiation will help my dad enough to allow for surgery too. Regardless, just keep fighting. Just ask whatever you need to know. Best regards to all!
cosmicsurfer7 said:Hi everyone, I'm new here and honestly, I'm feeling a bit lost... I noticed you've posted quite a bit about my malignant tumor. It's a Grade II astrocytoma in my brain. It's killing me. Please, if anyone can offer advice, reach out to me.
My dad has also been fighting a brain astrocytoma for a long time. He was also initially diagnosed as Grade II, but his grade has since progressed. Anyway, I'll help you with advice or shared experience just like all the good people on this forum, but it wouldn't hurt if you were a bit more specific. When was the tumor discovered? Have you had surgery? Is there a recurrence? Etc. Ask whatever you need to know.
Sarah Hill81 said:My husband has a vein surgery scheduled in a month (they're removing a vein), but he’s only getting a spinal injection instead of general anesthesia. He wants to know if it's painful because someone scared him, saying you could end up paralyzed if the injection isn't done perfectly. Thanks in advance!
Look, both my husband and I had surgeries a few years back where we both received epidural anesthesia, and everything went perfectly fine. The needle prick itself isn't even that bad; I barely even remember it. The only issue I ran into was afterward—you aren't supposed to get up for a little while after that kind of anesthesia, usually a day or two, depending on what the doctor advises. However, I didn't listen and tried to get up to go to the bathroom, which resulted in a week of unbearable headaches (even though they warned me about it). If it wasn't for those post-op headaches that forced me to stay in bed—which was totally my own fault—everything would have been flawless. Hope this helps at least a little.
Angela Wright said:Linda Peterson37 how is your dad doing? Did you manage to get anything done to make him more comfortable?
Thanks for asking. We're still fighting with the medical professionals. Check your PM.
brightgardener8, it would actually be incredibly helpful if your sister could write about how she handled that whole process of "nudging and persuading" the doctors. We've been fighting this exact battle for a while now.
Since waiting to start radiation or chemo after surgery isn't recommended, is there any way to prevent radiation machines from being out of commission for weeks at a time? Back in 1999, my dad had to wait months for radiation after his first surgery because he developed a massive, nasty pressure sore that had to heal first—he couldn't even sit up, and he was in a coma for a few weeks following the procedure. He physically couldn't go to radiation back then, but I'm thinking about the people who are physically ready to go, but can't because the equipment is broken!!!
Angela Wright said:Linda Peterson37, if this were my mother, I’d head straight to a private pharmacy, grab those pills, and give her at least a 12 mg dose. If she showed any improvement, I'd keep going. Look, there’s no harm in trying this for your dad. This disease is brutal, and everyone knows where it’s heading, but if there’s a way to ease his suffering, take it. If the doctors won't, do it yourself. That’s the reality of our palliative care—all talk from politicians who defend euthanasia as an option.🙄😠 I wouldn't lift a finger until that doctor prescribes something for the swelling. For God's sake, you're the ones with him; you know how sudden this decline was. It is blindingly obvious he's dealing with massive edema. Get him to a neurological ER and don't stop making noise until they actually do something to provide relief. People, you have to be blunt and assertive when demanding help. Don't just sit there waiting; make them act.
Fine, thanks. We'll do that. The thing is, my whole family and I are complete laypeople when it comes to medicine. If I hadn't come here to find actual answers, I wouldn't even know how to help or what direction to take. All we hear from the doctors is stuff like, "Well, what do you expect? You know he's severely ill," or "Don't let anything surprise you, these are all normal conditions." Are you kidding me?! Does that mean we shouldn't bother helping someone who's critically ill? At that rate, why bother with anyone, since we're all going to die eventually anyway. Unbelievable. 😠
Thanks to everyone for the advice. Without your experiences, we would be absolutely lost!
Nothing came of those medications. Mom went to see the neurologist who treated him during his hospital stay, and after a rushed "make it quick, I don't have all day," she said he was given dexamethasone at the hospital. However, they didn't notice any positive effect from it, so their assessment was that there's no point in continuing with it. So you try being smart about it... Yesterday morning he was incredibly drowsy again and I couldn't wake him up, then by the afternoon he was in great spirits—talkative, cracking jokes, full of energy... We're still waiting for the radiation machine to be repaired. It is honestly unbelievable that in a single hospital, which serves the entire Midwest and surrounding regions, the radiation equipment would be out of commission for this long.
Since I have immense faith in everything the "New Day" non-profit does, and I take my hat off to them for their initiative, I want to mention one thing that strikes me as odd and might be something to address in the future: when I tried to take leave to care for my father, the doctor told me that according to the law, leave is only available for caring for a spouse or a child. I truly believe it should definitely include caring for a parent as well.
Angela Wright said:I suspect there's a high chance brain edema flared up when his condition dropped that fast. It would be ideal if he could get an IV drip of mannitol to reduce the swelling, then bump up the dexamethasone dose—likely via injection—to keep him stabilized. Is he even receiving any dexamethasone right now?
He was getting it while he was hospitalized, but since they discharged him a week ago, he hasn't had any because the discharge papers didn't list it as a continuing medication. It doesn't make sense to me. My mom is heading to the doctor today to see if we can administer it at home... is that even allowed? We're just laypeople here, and the doctors aren't explaining anything. We don't even know what questions to ask or what medications he needs, especially since nothing was written in the discharge instructions about continuing it.😕
My life is so desperate right now that I can't see a way forward or how to comfort myself. I just don't know... my dad is doing very poorly (brain tumor). His condition deteriorated so rapidly from the start of the week until yesterday, when we couldn't wake him up at all during the afternoon. He's disoriented and snoring constantly. This is the first time he's been this lethargic—we all panicked so hard, I honestly thought he had fallen into a coma. We could barely communicate with him while giving him dinner, and even then, he could barely swallow and kept coughing.
I’ve been following the posts here over the last few days regarding alternative treatments, and I have to say I agree with most of what's been written, especially what Nusazvrk and Ivanna wrote. If there were a cure that would 100% heal my father, wouldn't I—and everyone else—grab it immediately? Personally, I believe in alternatives because my dad still uses various "alternative" things, and while I believe they can help significantly, they haven't cured him... He uses flaxseed oil, shark cartilage, cat's claw, and a whole list of other things, but his condition just keeps getting worse. Throughout his illness, I believed—and still believe—that alternative methods can do a lot of good, but they must work alongside modern medicine. As much as I want to believe that alternative therapy is a silver bullet, life is slowly proving me wrong.
I personally know a woman who had colon cancer back in 1991 and was helped by macrobiotics, but I also believe that what works for one person doesn't automatically work for someone else. We are all different; every disease and condition is unique. Even when two people have the same diagnosis, the stage of the disease varies, their bodies vary, so what works for one might not work for another. Maybe I'm rambling, but I'm just completely lost right now.
New member, , check your PMs. My dad is also dealing with a brain astrocytoma, so I want to share as much as I can—what we’ve dealt with and the alternative methods we used to boost his immunity and try to slow down the tumor's growth.
Honestly, what you did was just an expression of helplessness and weakness, and that kind of evil feeds on it. Try to control it. I know how hard that is, but once you overcome it within yourself, things will get much easier.
I get it—I realize I'm looking for someone to blame, thinking that venting my anger and rage at someone else will make me feel better, but it doesn't. All these negative emotions are still there, and I don't know how to purge them, though I know I have to if I don't want to lose my mind. I try to go hiking in nature as much as possible to clear my head, but even that fails more often than not. When the weather is nice, I think my dad would love to be out walking too since he loves walking the dog, but everything just circles back to the same thing. It feels like I'm stuck in a loop... I talk to everyone around me and try to accept things as they are, knowing I can't change anything except being there for him, making him laugh when I can, talking to him about everything, listening when he’s able to speak, and staying by Mom's side. I take her for walks because my dad was always such a fighter; he used to tell me, and still tells me, that I should never let myself stay sad or down.
I am with you, truly and from the bottom of my heart, just like I am with everyone else who finds themselves in an extremely difficult life situation.
Thank you so much! Every day I realize more and more how much heart everyone in this thread has. Thank you all!
I am absolutely livid with the state of our healthcare system—specifically the doctors at the hospital where my dad has been staying until today. It’s terrifying!! I have been on the literal verge of a nervous breakdown all day. I was so incredibly out of control that I had to go right back to the hospital just to tell them exactly what was on my mind. I know the nurses probably think I'm just some arrogant brat, and I know nothing I say is going to change anything, but I just had to get it out of my system—both for myself and for them. I have to do this because it's my dad, and he can't fight this battle for himself right now. Ugh!!!! I’ve read enough on Reddit to know that plenty of people deal with similar nightmares in hospitals, so I know I'm not alone, but still! Grrr.
rowdyraven6 and casualpanther1, thanks for the input. My dad finished his first round of radiation—16 sessions at 35.7 Gray tumor dose, plus 2 Gray to the tumor bed—and then completed six cycles of polychemotherapy using Vincristine and CCNU. Now they want to radiate the recurrence. We showed up for his appointment today only to find out the machine was broken! Given the doses he’s already taken, our family is worried. Could more radiation actually do more harm than good?
Does anyone know what the legal radiation dose limits are for a person? I'm not sure if I'm phrasing this right, but I want to know if there are specific thresholds that shouldn't—or can't—be exceeded. What happens if those levels are surpassed? This concerns head radiation. If there's anyone here who actually understands this stuff and is willing to help, I can DM you the specifics. thanks in advance.
Even though I read everything posted here religiously, I haven't had a moment to actually write anything myself until now... My dad is doing pretty poorly. He's been stuck in the hospital for over three weeks now, unable to move, and even though it’s incredibly hard to admit, things are bad. Some days he can talk more easily, other days it's a struggle; sometimes he's exhausted, sometimes he's just weary. One minute he's okay, the next he's sad. But what really breaks my heart and keeps me up at night is that for the last few days, he won't stop talking about death... It honestly feels like my heart is being ripped in two. I want so badly to help him, but I feel completely powerless. We have tried everything under the sun, from standard medical treatments to alternative medicine. I have scoured the internet for every single thing regarding brain tumors, yet there's still this nagging feeling deep down—this gut instinct telling me there might be something else out there, something we haven't tried yet that could actually help him. The despair is just starting to take over... In all of this, I have to say that, unfortunately, I've had some pretty lousy experiences with doctors. Not all of them, obviously, but some act so strange—answering my questions with simple "yes" or "no" responses. When I ask about specific therapies, they get vague or defensive, acting like I'm stepping on their toes or interfering with their job. They do absolutely nothing to ease the burden on a family that is already struggling, and it's just one more fight we shouldn't have to deal with. Sending strength to all the brave people fighting for a new day!!!!!!!!!!!
slyseal28 and Angela Wright, I just caught you both on NBC—huge props to you!!!!!!!!!!!!! You were absolutely brilliant!!
My dad's condition hasn't changed, though if I'm being honest with myself, he's rambling more often than he used to. Our main issue right now is that they need to reduce this cystic mass within the tumor, but the doctors were blunt with us: because of his surgery seven years ago and the fact that he ended up in a three-week coma afterward, there's a real chance he won't survive the procedure. So, how do you even make a call like that? In my eyes, choosing surgery or playing it safe feels like a coin toss where both sides are equally dangerous. I'm wondering if anyone here has dealt with something similar. Has anyone ever tried reaching out to bioenergy healers or anything along those lines? Any experiences to share?