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Support resources for families dealing with cancer and other serious illnesses

Started by James Cox6 · · 👁 376 views · 3.9K replies

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Participants James Cox6Lisa White54shadowmason6Angela Wrightbrightgardener8Melissa Moore39James Martinez3Grace Stewart6Megan Fowler78Zachary Howard2Ashley Rodriguez41Douglas Lee13rowdyheron17placidheron24slyseal28jadesailor14Michael Newman3jadetinker42Benjamin Grant6wanderingharbor61cosmicviper76Dana Baker37Jason Torres5Peter Chavez6 …
Lisa White54 Lisa White54 Active Member
213 messages
joined Jul 2008
#1741 ·
Drew Brooks8 said:Honestly, Jane Doe🤷 I really can't tell if this guy is just some total fraud🤷

The deputy for the group trying to get registered is Jane Doe, a mom with a 6-year-old girl who had a brain tumor. Doctors gave her 6 months to live, but fast forward 14 years and the tumor is gone—all that's left is needing a wheelchair.
Then there's Nikolai Totsev, dealt with malignant melanoma back in '99 and beat it. Then Jane Doe in '04, stomach cancer, also cured... They're pushing for registration right now because the guy is already 87.
There are more stories like this here...
http://www.facebook.com/pages/Neka-B...app_2347471856

First off, you were pretty nasty calling Jane Doe that... Have some shame!
Everyone fights this disease in their own way and everyone gets to make their own choices. As for what actually works? Who knows. Personally, I stick to mainstream medicine. I'm certain nobody could have saved my husband from those famous scammers who get rich off sick people... That's just how I see them. I've never gone to them and I don't buy into it. Medicine saved my husband, along with my efforts with his diet and immune boosters. I could technically claim my husband was "cured" by my special juices too, right? Why not! There isn't a single cancer cell left—that 6cm tumor on his lungs and trachea just vanished... and he feels great! I could easily whip up some drinks, charge people money, and parade my husband around as proof of my success to get rich... wouldn't I! But I know how sneaky this disease is, and I know we'll never truly be in the clear. Every little ache, every tiny change brings that massive doubt about whether it's coming back... It's such a heavy battle, and honestly, kudos to all the brave fighters out there every single day.
As for the frauds... they better watch out for God! I mean, who actually has a cure for cancer?? If someone did, they'd definitely be the most famous person on the planet.
And please, cut the insults in the future! You don't know anything about us!
placidfalcon placidfalcon Member
42 messages
joined Dec 2012
#1742 ·
Hey, does anyone know if I can pick up Biobran powder anywhere cheaper than at Bio&bio? thx!
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1743 ·
Amy Hill55 said:Hey everyone,
since you all seem to know your way around this stuff, I wanted to ask... my dad had surgery for colon cancer almost two years ago, and his latest tumor marker results came back slightly elevated. Specifically, his CEA is sitting somewhere above 5. Is that something we should be seriously worried about?
Thanks for the help!

Look, that's just an indicator that he needs more testing. You can't rely on markers alone for a diagnosis because they aren't 100% reliable tools. Think of them more like a tripwire—if something spikes, then you move forward with deeper investigations.
I wouldn't lose any sleep over it until there are actual imaging results on the table.
It really could end up being nothing at all.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1744 ·
Lisa White54, I honestly think Drew Brooks8 just made a typo. She didn't mean anything by it.
neonbadger50 neonbadger50 Newcomer
7 messages
joined Jun 2010
#1745 ·
Hello everyone, and a special hello to Angela Wright. This is my very first time visiting this forum tonight, and I must say, what you all do here is truly wonderful. I had no idea such a community even existed. As I mentioned, I only found my way here because I was searching online for information regarding malignant brain tumors. My brother called me from Vienna earlier this evening with some devastating news. Our mother is currently in the hospital with what appear to be very serious test results. While nothing is 100% confirmed yet, it most likely involves a malignant brain tumor that is pressing against the part of the brain responsible for balance and memory (please forgive my lack of medical terminology; I only started looking into this more than an hour ago). All the symptoms initially pointed toward a stroke, but now we are learning this. I felt I could find the courage to seek out some light amidst the darkness here on your forum, and for that, I am deeply grateful. I live in the USA and don't have many friends with whom I can speak so openly and pour my heart out—especially now, at 5:00 AM, while the rest of the world sleeps and I find myself unable to close my eyes. Reading your stories here has moved me to tears; I truly admire how you all manage to cope with everything. I won't burden you further, as I am still waiting for the official results to confirm exactly what the doctors suspect. Regardless of whatever the outcome is for my mother, I will continue to visit this forum. Thank you, Angela Wright, for creating such a space, and I wish you all nothing but the absolute best. Thank you once again; you are all in my prayers...
Angela Wright said:Because family members and loved ones go through such incredibly difficult times alongside those who are seriously ill, and because our society lacks adequate psychological and other forms of support, I decided—being personally affected by this issue—to start this forum. Here, those of us who are (or have been) facing these struggles can help one another through advice and support.

Please leave a post here; I will always make sure to write a response, offer advice, or simply be there for those of you who are struggling, perhaps even more so than the person fighting the illness directly.

Personally, I have walked through hell and am still walking through it, and I believe no one should ever have to face this alone.

Sending big hugs to everyone.
Amy Hill55 Amy Hill55 Newcomer
1 message
joined Jun 2005
#1746 ·
@Angela Wright/">@@Angela Wright Thanks for getting back to me 🙂
Just crossing my fingers that it's nothing serious 🙂
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1747 ·
neonbadger50 said:FIRST OFF, HELLO TO EVERYONE, AND A SPECIAL HELLO TO ANGELA WRIGHT. TONIGHT WAS MY VERY FIRST TIME LOGGING ONTO THIS FORUM, AND I HAVE TO SAY—WHAT YOU DO HERE IS TRULY WONDERFUL. I HAD NO IDEA A PLACE LIKE THIS EVEN EXISTED. AS I MENTIONED BEFORE, THE ONLY REASON I’M HERE TONIGHT IS BECAUSE I WAS SEARCHING ONLINE FOR INFORMATION REGARDING MALIGNANT BRAIN TUMORS. MY BROTHER CALLED ME FROM VIENNA EARLIER THIS EVENING WITH SOME HEARTBREAKING NEWS. OUR MOTHER IS IN THE HOSPITAL, AND based on how heavy the initial findings look—though they aren't 100% confirmed yet—it most likely looks like a malignant brain tumor. It seems to be pressing against the part of the brain responsible for balance and memory (please forgive me if I don't use the right medical terminology; I only started looking into this about an hour ago). All her symptoms originally pointed toward a stroke, but now we're facing this. I found the courage to come here to find some light amidst all this grief and sadness, and I want to thank you all so much. I live in the US and don't have many friends I can talk to this openly with, especially not at five in the morning while everyone else is sleeping and I can't even begin to close my eyes. I've been reading through your stories here, and many of them brought me to tears. I truly admire how you all handle everything. I won't bore you any further since I'm still waiting for the official test results to confirm what the doctors are suspecting. Regardless of what happens with my mother, I will continue to visit this forum. Thank you, Angela, for creating such a space, and I wish you all nothing but the absolute best. Thank you again—you are all in my prayers...

Dear neonbadger50, I'm crossing my fingers that everything turns out as well as possible.
Just a quick tip: try not to write in all caps on the forum. It comes across as shouting, which actually goes against the community rules.
Ronald Rivera5 Ronald Rivera5 Member
11 messages
joined Mar 2011
#1748 ·
I posted a while back about my dad, who’s currently stuck over in Jordan. He’s been there for about two weeks now, maybe even longer.
During those first couple of days, they told us he wasn't going to make it—that they found some kind of cancer in his abdomen that had already spread to his lungs. Honestly, I was floored by how fast they slapped a diagnosis on him, though I wasn't the one talking to the doctors; it was just the family members living in Vienna.
Eventually, I headed out there to be with him and try to keep his spirits up, but he's just getting more and more anxious and frustrated because nobody is actually telling him anything. I try to hunt down the doctors, but it's like they don't even exist.
After a bit, I started calling them. Let me tell you, those phone calls have been incredibly uncomfortable. I've dealt with some real aggression on the other end (not naming names here), all because I asked a simple question about the bronchoscopy procedure. Nothing crazy.
So, I just thought to myself, "Fine, don't react." Who knows how much longer Dad will be there or how often we'll need to deal with this same doctor. I just swallow the frustration and move on.
And then, suddenly, comes the update: apparently, there were never any metastases in the lungs, and they still don't even know what they're looking at. They aren't sure if it's malignant or benign, where exactly it is, or what's going on. They say they have to wait for more test results. 😲

Long story short—they basically buried him in our minds within the first few days he was there. And now? Now they're saying they don't know anything yet.

I'm not angry, obviously, because hey, they gave us hope. I'm clinging to that hope right now, but honestly, I'd rather not read through everything I wrote before, seeing how many of those hopes were just crushed. It just doesn't make sense... they've been letting him suffer for over two weeks and they still haven't figured things out. 🤷
shadowmason6 shadowmason6 Newcomer
1 message
joined Oct 2008
#1749 ·
placidfalcon said:hey, does anyone know if there's a cheaper place to pick up Biobran powder than Bio&bio? thx!

Hmm, yeah, I've been wondering about that too...
I think I read somewhere once about a pharmacy near Dolac Market, but honestly, I can't quite remember... If you're sticking with Bio&bio, at least grab one of those loyalty cards—if you're buying Biobran regularly, you'll rack up enough points for a discount on $33 pretty fast...
Let me know if you dig anything up...
shadowmason6 shadowmason6 Newcomer
1 message
joined Oct 2008
#1750 ·
Amy Hill55 said:Hey everyone,
since you all seem to know your stuff when it comes to this kind of thing, I wanted to ask... my dad had surgery for colon cancer almost two years ago, and his latest tumor marker results came back slightly elevated—his CEA is sitting somewhere over 5. Is that actually something to worry about, or...?
Thanks for any help!

Look, I can't give you a definitive answer on that (though I'm hoping someone smarter than me jumps in🙂, I can only really share what we've dealt with). It’s been about two years since my mom’s surgery too, and her CEA is right there on the edge—it hasn't crossed the line, but it isn't exactly low either. Honestly, I have no clue if that's a reason to panic or not.
She gets regular checkups and does a CT scan (I think it's an MSCT) which has looked good so far. Did your dad get a CT done yet? If they haven't sent him for one, I'd bet they will once they see those marker levels, and then you'll actually have some real answers...
neonbadger50 neonbadger50 Newcomer
7 messages
joined Jun 2010
#1751 ·
Dear Angela Wright, first, please accept my apologies for typing in all caps earlier. Please forgive me; I didn't realize it was an issue, and at the time, it felt easier to type without worrying about capitalization rules. I am truly sorry once again. Also, thank you so much for your response.
Today, I learned that my mother was examined by a neurologist, and they are still insisting it is a malignant brain tumor that has metastasized. However, a friend's husband, who works in the medical field here in the States, maintains that a doctor cannot confirm such a diagnosis without a biopsy. He explained that CT scans can show masses that might actually just be cysts or blood clots forming under these circumstances. I honestly don't know what to believe anymore; listening to every different piece of advice and opinion is becoming quite overwhelming. I simply don't know how to handle this situation, especially since the worst-case scenario involves being so far away. I haven't seen my mother in eleven years, and now I am hit with this terrible news. I am struggling to know how to behave or stay calm right now. I feel like I am setting a poor example for my children, as they watch me cry and struggle with despair these days, knowing full well that there is nothing I can do. I lost my father ten years ago, but it wasn't even remotely as painful as this. He passed away suddenly from a heart attack, but this current hell—where you live with the constant uncertainty of whether a loved one might get better or leave you forever—is a horrific state to be in. Has anyone else here dealt with a similar diagnosis? If so, please reach out; even just a bit of advice or a better explanation regarding my mother's condition would mean the world. Thank you all in advance...
neonbadger50 neonbadger50 Newcomer
7 messages
joined Jun 2010
#1752 ·
Grace Campbell88 said:I previously shared some details regarding my father, who is currently staying in Jordan. He has been there for about two weeks now, if not longer.
During those first few days, we were told he wasn't going to make it; apparently, they found cancer in his abdomen which had already metastasized to his lungs. I was quite stunned by how rapidly such a diagnosis was reached, though I wasn't the one speaking with the doctors—it was other family members living in Vienna.
In the meantime, I traveled to be with him to offer support, but he is becoming increasingly anxious and frustrated because no one will give him any clear information. I have attempted to locate the physicians, but they seem nowhere to be found.
After a while, I began calling them over the phone. I have dealt with incredibly unpleasant conversations and even verbal aggression from the other side (I prefer not to name the doctor), all when I was merely inquiring about a bronchoscopy procedure—nothing extraordinary.
Fine, I thought to myself, I will simply not react. After all, there is no telling how much longer Dad will need to remain there or how often we will need to interact with this same physician. I swallow my pride and just push forward.
Now, suddenly, the information changes: they claim there were no mentions of lung metastases, and they still aren't entirely sure what is happening, whether it is malignant or benign, where exactly it is located, or what the situation entails. They say we must wait further for the test results. 😲

To sum it up—they essentially gave up on him within the first few days he was there. And now, they are claiming they don't know anything yet.

I am not angry, naturally, because they have provided me with hope. I am holding onto a great deal of hope right now, though honestly, I find myself avoiding reading previous posts because I see how many hopes have been crushed. It is simply baffling to me... they have had him under their care for over two weeks and still lack clarity. 🤷

Best regards,
I find myself in a very similar situation, so I truly understand how you feel. If there is one thing I can tell you, it is this: do not allow the doctors or their behavior to irritate you. As you mentioned, there is no telling what might happen or how long your father might require the care of these same doctors. You must stay strong; it is the best thing we can do for our loved ones. From what I have gathered through various instances, many doctors behave in this exact manner. I wish you nothing but the best, and I am keeping my fingers crossed for your father. I truly hope for the best possible outcome..
neonbadger50 neonbadger50 Newcomer
7 messages
joined Jun 2010
#1753 ·
placidfalcon;27485602 said:Hi, does anyone know if Biobran powder can be found cheaper at ZGu than at Bio&bio? thanks! [/QU

Greetings,
If you wouldn't mind, could you please confirm if Biobran is indeed the dietary supplement containing 250mg of Rice Bran Arabinoxylan Compound (RBAC)? My understanding is that it is scientifically proven to support the immune system, specifically regarding NK Station activity.
If that is correct, I have actually discovered here in America that this specific Biobran has been discontinued locally. However, there appears to be a suitable replacement in capsule form called PeakImmune4 250mg. A single bottle of 50 capsules is priced at $39.75, or you can get a pack of six bottles for $238.50. You can find all the details on this website: http://www.nutritiongeeks.com/p-7680...Fc9L5wodp1_tIA
I certainly hope this information proves useful to you. If not, please do let me know; perhaps I might be able to uncover more details if you would kindly explain what you are using it for and what the current price is in Vienna so that I may better understand the market.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1754 ·
neonbadger50 said:Dear Angela Wright, first off, please accept my apologies for typing in all caps. Forgive me—I didn't realize at the time, and it was just easier to type in caps rather than stopping to think about grammar. Sorry once again. Also, thank you so much for your reply.
Today I found out that my mother was seen by a neurologist, and they are still insisting it’s a malignant brain tumor that has metastasized. However, a friend's husband, who works in medicine here, argues that a doctor can't confirm that diagnosis without a biopsy. He says every CT scan shows tumors that could actually just be cysts or blood clots forming in these situations. I don't know what to think anymore; I'm listening to every piece of advice and opinion, and it's just making me more confused. Honestly, I have no idea how to handle this situation, which, in the worst-case scenario, means dealing with it from a distance. I haven't seen my mother in 11 years, and now this nightmare news hits me. I don't know how to act or stay calm right now. I'm setting a bad example for my kids, too, as they watch me cry and fall apart, knowing full well there's nothing I can do. I lost my father 10 years ago, but it wasn't even remotely as painful as this. He died suddenly from a heart attack, but this hell—knowing a loved one might get better or might be gone forever—is a horrific state to be in. Has anyone else dealt with a similar diagnosis? Please reach out, even if it's just to offer advice or help explain my mother's condition better. Thank you all in advance...

😁You don't need to apologize to me; I didn't write the forum rules. I only made that remark so the moderators wouldn't slap you with a pointless ban.

Your friend is absolutely right. Without a pathology report, nobody can claim anything with 100% certainty.
We actually had a case in our association where a man's pathology results were messed up, and he was being treated for a brain tumor based on a suspicious finding. Luckily, before he started chemo, his wife sent the scans and tissue samples off for a second opinion and a new pathology analysis. It turned out the man had actually suffered a stroke. Of course, the whole thing is heading to court now, because those 30 radiation doses definitely did damage to his already fragile vessels, not to mention the potential long-term consequences.
In other words, regardless of how experienced some doctors are and how much they think they can eyeball a diagnosis, everything should be taken with a grain of salt until you get a relevant confirmation via pathology. Both an ischemic insult and a brain tumor are serious diagnoses, and they both demand the same level of serious, professional scrutiny.
I know this is incredibly hard, but try to approach the whole thing as rationally as possible. Right now, nothing is concrete yet, and that's how you have to handle it.
Amy Hill55 Amy Hill55 Newcomer
1 message
joined Jun 2005
#1755 ·
shadowmason6 said:I can't give you a definitive answer on that (though hopefully someone with half a brain pops up 🙂, I'm just sharing what I've seen). It’s been about two years since my mom had her surgery, and her CEA levels are hovering right around the limit—not over it, but definitely not low enough to feel totally relaxed about. I honestly don't know if it's cause for alarm yet.
She stays on top of her checkups and does regular CT scans (I think they're MSCT), which have looked good so far. Has your dad had a CT scan yet? If they haven't sent him for one, I bet they will once they see those marker results, and then you'll actually have some real answers.

He was just there for blood work, so they'll check the markers, plus he needs an ultrasound and a chest X-ray before heading to the oncologist with everything. I'm really hoping it's nothing; at least, that's what I'm trying to tell myself. 🙂
Thanks for getting back to me 😉
placidfalcon placidfalcon Member
42 messages
joined Dec 2012
#1756 ·
neonbadger50;27506385 said:
placidfalcon said:Hey, does anyone know if I can pick up Biobran powder cheaper somewhere in Vienna than at Bio&bio? thx! [/QU

Hey,
Let me know if Biobran is that dietary supplement containing 250mg of Rice Bran Arabinoxylan Compound (RBAC)—the stuff scientifically proven to boost the immune system, specifically NK Station activity.
If it is, I actually found out here in the US that they discontinued that specific Biobran, but there's a replacement called PeakImmune4 250mg capsules. You can grab a bottle of 50 for $39.75 or a 6-pack for $238.50. All the details are on this site: http://www.nutritiongeeks.com/p-7680...Fc9L5wodp1_tIA
Hope that helps. If not, hit me up—I might be able to dig up more info if you tell me what you're using it for and what the going rate is in Vienna so I have a baseline.

Yeah, that's the stuff. Here are the prices:

Thanks for the heads up. Cheers.
neonbadger50 neonbadger50 Newcomer
7 messages
joined Jun 2010
#1757 ·
Angela Wright said:😁You really don't need to apologize to me; I didn't write the forum rules. I only mentioned the guidelines because I wanted to make sure the moderators wouldn't penalize you or issue a ban unnecessarily.

Your friend is absolutely correct. Without a formal pathology report, nobody can claim anything with absolute certainty.
Back when we were part of that association, we actually dealt with a case where a man's pathology report was completely misinterpreted. He was being treated for a brain tumor based on a highly suspicious finding. Fortunately, just before his chemotherapy started, his wife sent the results and tissue samples off for a second opinion and a new pathology analysis. It turned out the man had actually suffered a stroke. Naturally, the whole matter is heading to court now, as that 30-dose radiation treatment certainly did damage, especially given how fragile his vascular system already was—not to mention the potential long-term consequences.
In other words, regardless of how experienced certain doctors might be or how much they think they can estimate, everything should be taken with a grain of salt until there is definitive confirmation via a pathology report. Both an ischemic stroke and a brain tumor are incredibly serious diagnoses, and both demand the exact same level of rigorous, expert scrutiny.
I know this is incredibly difficult for you, but please try to remain as rational as possible throughout this process. At this stage, nothing concrete has been confirmed yet, and that is how one must approach the situation.

Thank you to everyone who reached out with advice; I am truly grateful to all of you, and a special thanks to Angela Wright and Goran—you both are wonderful.
Mom is still in the hospital, and we are waiting on the biopsy results. There is a heavy sense of sadness hanging over us right now.
We still don't know where we stand. We are praying for the best possible outcome.
neonbadger50 neonbadger50 Newcomer
7 messages
joined Jun 2010
#1758 ·
Yesterday, I received the news regarding my mother's biopsy results, and unfortunately, they confirmed our worst fears. She has a malignant brain tumor that is progressing quite rapidly, and she needs to undergo surgery immediately. Our entire family is reeling from this diagnosis, but I think I am feeling the weight of it most acutely. I had placed all my hopes on a more benign outcome, so I find myself feeling utterly devastated right now. I truly don't know how others navigate through situations like this, but for me, it feels absolutely overwhelming.🤷😕
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1759 ·
neonbadger50 said:I got the biopsy results back regarding my mother yesterday, and they confirmed our worst fears. She has a malignant brain tumor that’s aggressive, spreading incredibly fast, and she needs surgery immediately. This news hit us all hard, but I think I'm taking the biggest hit personally—I had pinned every last bit of hope on things being less severe, so this level of disappointment is just crushing. I honestly don't know how other people navigate this kind of reality, but for me, it feels absolutely devastating.🤷😕

So, which tumor are we actually dealing with here? Is it a glioblastoma or an astrocytoma?

Of course it feels like hell. You’re dealing with one of those fundamentally brutal life situations—the kind of news you spend your entire life thinking, "that'll never happen to me," only to have it land right in your lap anyway. It sucks.
I remember when my entire world just imploded out of nowhere. I spent six months in a complete coma, totally dysfunctional and spiraling into deep depression. Back then, there’s no way in hell I would have had the mental capacity to even type a single sentence on a forum. Honestly, you're handling this so much better than I ever did, and you really have my respect for that.
You have to stay locked in on the present moment; don't waste your energy spiraling about what might happen down the road.
At this stage, the absolute priority is determining whether that tumor is actually operable. It’s the single most critical factor because it dictates everything—it fundamentally changes the entire trajectory of treatment and, ultimately, how much more time someone gets.
Sophia Ross53 Sophia Ross53 Member
20 messages
joined Jul 2010
#1760 ·
Hi everyone. My mom was diagnosed with inoperable throat cancer about a month ago. She’s already finished radiation, which she handled quite well, but now she’s starting chemotherapy and I’m honestly terrified about how she'll hold up. She's experiencing some mild side effects right now, mostly fatigue and heartburn.
I was wondering if anyone else happened to see that article in the Free Press.

It's about a man who is the first in the country to successfully cultivate mushrooms with anti-cancer properties.

You can find more details about his work here:
If any of you have experience with this, please let me know. This is all so new and overwhelming to deal with.

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