Resources and support for families dealing with cancer and serious illness

Angela Wright said:@Christian Wood63/">@@Christian Wood63

I have tried tapering my mother off Dexamethasone several times now, and it always ends in disaster—her neurological symptoms flare up so violently it’s terrifying. One day we couldn't even wake her up; that wasn't from the taper itself, but because the edema worsened. The only thing helping right now is

We’ve started taking Silmarin capsules, which are a natural liver support. We also cut the Phemiton down to half a tablet.

Honestly, I have no idea what we are doing anymore. We are just stumbling around in the dark, following some internal logic that doesn't even make sense.
I’ve actually started questioning this Tahitian Noni business. We are going to stop using it for a while to run more liver tests and see if there is any actual improvement.
Where can one even find that boswellia extract? Is it this:http://www.super-smart.eu/article.pl...n&fromid=GG132

Hi everyone... I read your posts religiously. It feels like we are all walking through the exact same fire... at least we’ve learned who our real friends are and who isn't. You know how they say "hard times reveal true character"? Well, it's not just friends—even my mother-in-law won't even ask how I am or if I need anything. But the second her own mother runs a fever, she’s calling my cell phone demanding to know what to do... I won't even waste my breath on that.
My father is getting worse by the day. He has no strength left to even sit up, and the hardest part is his refusal to accept help. He wants to do everything himself, but when he realizes he can't, he starts cursing. One day he's like that, and the next he just sleeps—won't wake up, won't eat... now he won't even take his pills.
I disagree with tapering off the Dex; based on how I monitor my father, he actually does better when the dose is increased. I get lucky sometimes and can give him Mannitol—not that I can do it myself, since his veins are impossible to find, but a friend of mine who is an anesthesiologist drops by occasionally to administer it. I have several vials of Mannitol on hand; if anyone knows a nurse who can handle the IV work, I'll give you a few bottles. It really helps my father; somehow, after the Mannitol, he comes back to life. He’ll sleep all day, but the next day he actually gets out of bed and stays lucid. A primary care doctor can order Mannitol through the clinic, though you might have to pay for it if they won't provide it for free... but sometimes I wonder if I'm doing the right thing or if I'm just prolonging his agony out of sheer selfishness. Even my mother asked me whether we should give it to him or... but I can't just sit here and watch him suffer. Sometimes he even asks me when he's getting his Mannitol, and of course, I give it to him. You were right to say we are stumbling in the dark; it is tragic that in this day and age, we have to fend for ourselves like this. I called his oncologist, and do you know what she told me? She suggested we just put him in a facility if we can't handle it at home. I practically slammed the phone down on her. If only I could ask her how she would feel if it were her own family.
I am just terrified that my father will pass away while I am not there. I am with them every single day, but I still have to work. Every time the phone rings, my heart stops. And it goes on like this, day after day. Don't misunderstand me, but sometimes I just wish it would all be over so he wouldn't have to suffer anymore...:

I know exactly what you're going through; I've walked that same path myself, and let me tell you, the pressure is suffocating. And then there’s that added layer of bitterness—that moment when you finally see people for who they truly are, when you feel their true colors through your own skin. Realizing how much some people around you can be complete jerks just makes the whole burden feel twice as heavy and twice as impossible to bear.
But you will endure. You have to. I trust that God will grant you whatever strength is necessary to weather this storm. Do not let fear take hold. Stay resilient, stay stubborn, and above all, keep fighting and believing in recovery. That belief is the anchor that will hold you steady, and it's what will sustain all of you. You simply have to. Sending love.

I managed to track down Boswellia in pharmacies around the Midwest; I picked some up in Chicago at places like Walmart or Target, and it didn't cause any issues.
I haven't been giving her much of it lately, mostly because my mother's condition has stabilized somewhat over the last two months.
As for mannitol—it can be dangerous. I think back in May, my mother ended up in pulmonary edema, which was a nightmare to resolve. It looks like it was actually a combination of edema and pneumonia, especially since one bottle caused total chaos after about five or six days.
In those cases, you obviously have to use a Braun line, like an IV, as a solution for long-term administration.
I’m aware that dexamethasone solves certain problems, but it’s incredibly potent and notoriously difficult to taper off. I refused to give it to my mother, even though I have some sitting right here at home.
It isn't easy dealing with a situation where there is no good prognosis... even from a doctor's perspective.
It’s no trouble for us to drive up to Chicago if they don't have it in Washington, D.C.; I'll check first thing tomorrow morning to see if they have it in stock nearby.
Brufen is honestly too weak for all of this, even if it helps occasionally.
I've read plenty online regarding Boswellia, so I administered it cautiously. You shouldn't give it in small doses because of its strange effect on tumors.
It's only effective in higher doses, specifically more than two grams. I'll find a few websites for you.

Has anyone here actually tried the Breuss diet before? Like, what kind of results are we talking about? Please, if you’ve done this, spill... My dad just started it, so I’m trying to figure out if it’s legit or what...

Christian Wood63 said:So, go ahead and describe just how "terrible" she was feeling for me...

This all went down almost two months ago. One day she’d be totally fine, and the next, she could barely even stand up. She could hardly sit, let alone keep her eyes open, and talking was a massive struggle. She basically slept through the entire day. But then, after we bumped up the dexamethasone dose, she practically snapped out of it the very next day, like nothing had even happened. We had another episode this month, though it was a bit milder. It all played out over about 8 or 9 hours. By evening, she was back to herself again—and we didn't even increase the dexamethasone that time.
We were at a checkup today; she was supposed to start her third cycle of Temodal tomorrow, but they can't move forward because her blood work looks bad. Her blood counts are way too low...😢
Could that be caused by this?

brightgardener8 said:This happened nearly two months ago. One day she was perfectly fine, and the next, she could barely stay on her feet. She could hardly sit up, let alone keep her eyes open or speak. She slept almost the entire day. After we bumped up the dexamethasone dose, she suddenly snapped out of it the very next day, acting as if nothing had ever happened. We dealt with a similar, though milder, episode this month. It all unfolded within about eight or nine hours. By evening, she was back to herself again—and we didn't even increase the dexamethasone that time.
We had a follow-up appointment today. She was supposed to start her third cycle of Temodal tomorrow, but because of her blood work, that’s off the table. Her blood counts are way too low...😢
Can anything influence those numbers?

My mother's lymphocyte count has been hovering right at the bottom limit of 1.0 since her first checkup.
And we are administering the chemo at home every morning. My mom gets sick with a cold every two months—don't act surprised.
Regarding your mother, she had similar symptoms. However, my mom hasn't stopped talking since then; you can tell she's conscious and thinking clearly, even though the right side of her body is paralyzed. A few days after the initial onset, she just stopped speaking in coherent syllables and started making "la-la-la" sounds. Then the dog caught a cold a month later, and her speech faltered again. Now, she tends to mash everything into one single word, but we understand her perfectly—it's like we just intuitively know what she means.
I noticed this happening with my mother around the time she finished her first cycle, or shortly after. In her case, it actually happened before we even started the Temodal, so we took the risk and began the Temodal treatment anyway.

For the past month, we've been giving her immune stimulants. We need to source more, naturally, specifically plant-based ones, but the lymphocyte count won't budge (we're using ginseng, cat's claw, reishi, astragalus, and dong quai). Because of that, we always keep parenteral antibiotics on hand just in case, along with oral options.
Her hemoglobin is around 140, I believe, thanks to those aloe vera ampoules.

Drew Nguyen47 said:Has anyone here actually tried the Breuss diet and seen any real results? Please, if you have, share your story. My dad just started this regimen, so I'm trying to figure out if there's any substance to it based on what you guys have experienced.

Look, near the beginning of this thread, lepina showed up and claimed he beat cancer using this exact method. Just scroll back through the posts; you'll find him. Honestly, you should go check out his blog too.

Drew Nguyen47 said:Does anyone here have experience with the Breuss diet and its actual effects? Please—if you know anything, share it with me. My dad started this regimen, and I’m just desperate to hear if anyone else has gone through this.

My father is currently on day 26 of fasting.
He suffers from intense, periodic pain all over his body—it is absolutely exhausting him, both physically and mentally. For the last three nights, his left ear has been throbbing. Before that, it was his legs, then his shoulder, briefly his head... the pain just migrates through him. And it only seems to strike at night. His bowel movements are also incredibly heavy every other day—which, frankly, is hard to even wrap my head around. Yesterday, he actually had two within a 12-hour window. This is all happening without any cleansing teas or enemas. Since the first day of therapy, the odor from his stools has been horrific. Even his skin has an odor—which I suppose is normal, given the body is purging toxins in every possible way.
He has lost all his strength; he can no longer get out of bed, turn over, or even make it to the bathroom. He has also lost significant weight. We don't weigh him because it isn't appropriate, but in my estimation, he is down at least 45 pounds.
He complains of being utterly exhausted yet unable to sleep, which only adds to his misery. Mentally, he is quite fragile—he wavers, wanting to give up, before gritting his teeth and deciding to push through again.
He’s drinking kidney tea, a sage blend, vervain, and some tea for lungs and bones, along with royal jelly. Of course, we also give him the beet juice blend—though since we can't make it ourselves, we have to buy it. He probably only feels hungry once or twice a day during this whole period. He won't even touch the onion broth, so we don't force him.
His mood, energy, and nerves fluctuate wildly from one day to the next. There are days when he is pain-free, filled with optimism and faith—only to be hit by nights like these last three, where he howls in agony. It completely destroys him, to the point where he begs us to just let him die.
In my view, this is his only shot at survival. Chemotherapy would likely kill him even faster, and the suffering would probably be even worse. Besides, his doctors didn't exactly push chemo on him; they were more inclined toward pain management (but I don't want to go there right now—it's not the time for outbursts of anger or bitterness).
We are praying and placing everything in God's hands...
Tell your dad not to give up. If you need specific information, you can ask Lepin on the forum. He doesn't post often, but he follows this community closely and even has a blog under the same name—you can message him there and he'll likely respond.
Hang in there, and remember: NO GIVING UP.

Drew Nguyen47 said:Has anyone here actually tried the Breuss diet—and more importantly—what were the real results? I’m truly eager to hear from you. My father has just started this regimen, so I find myself wondering... has anyone else navigated this journey already?

I should point out—if I may—that... It is absolutely critical—truly vital—that therapy is administered exactly according to the prescribed instructions. Why would anyone take such a risk?No deviations—nothing extra—no medications, and absolutely no food involved. I am telling you this from firsthand experience. Sadly, I personally know a lady who tried incorporating vegetables while undergoing her treatment, and she achieved nothing at all. She simply exhausted her body—and the tumor didn't budge.

@northernfox9/">@@northernfox9, I can't even begin to express how much I'm standing by you and your father; I want this success more than anything. Just let it all out—if he managed to power through these first 26, he’s got the strength to crush the remaining 14...

Christian Wood63 said:I managed to track down Boswellia in pharmacies over in Mexico; I picked some up in Belgrade at places like Super Ver or Mercator, much like finding aspirin locally... I didn't have any issues with it.
I haven't been administering much lately, given my mother's supposedly "stable" condition over the last two months.
As for the mannitol—well, it can be dangerous. If I recall correctly, my mother ended up in pulmonary edema back in May, which we barely managed to resolve. It looks like it was actually a combination of edema and pneumonia because a single bottle caused absolute chaos after five or six days.
Naturally, one would use a Braun line, or an IV, as a solution for long-term administration.
I am aware that dexamethasone resolves certain issues, but it is far too potent and incredibly difficult to wean someone off of. Consequently, I haven't given any to my mother, even though I have some at home.
It isn't easy dealing with something that lacks a favorable prognosis... not even when you are a doctor.
It’s no trouble for her to make a trip to Belgrade if they don't have it in Washington, D.C., or anywhere else in America. I will check first thing tomorrow morning to see if they have it nearby.
Brufen is frankly too weak for all of this, though it can occasionally help.
I've read quite a bit online about Boswellia, so I've been administering it cautiously. One shouldn't give it in small doses due to its strange effect on tumors.
It is only effective in larger doses, specifically more than two grams... I'll find a few websites for you.

Mannitol certainly didn't cause the pulmonary edema; it is a powerful diuretic in its own right, used here for major open-heart surgeries... so I fail to see why you are linking mannitol to edema. On the contrary, it absolutely drains the system. And what exactly is this Boswellia supposed to be????

Hello,

This is my first time posting on this forum.
My father first showed symptoms at the beginning of June, specifically a fever, general weakness, and significant weight loss. Three months prior, he caught the flu and had his lungs scanned at Jordanovac due to some shortness of breath. At that time, the results appeared normal.
Ultimately, multiple granulomas were discovered in his lungs, which a biopsy confirmed were metastases. They also found a metastasis in his adrenal gland. The primary tumor has never been located. He has completed two rounds of chemotherapy so far, and we start the third one this Tuesday. My biggest concern is his weight loss; since his last cycle, he has dropped another 4 kg, bringing him down to 86 kg from an initial healthy weight of over 100 kg.

No one has given us clear guidance on what to expect, how to manage his nutrition, or what medications he is eligible for.

I am looking for advice on nutritional supplements to help him regain weight quickly, and whether these are covered under our insurance through CMS.

What are your thoughts on "smart drugs" such as ?
Is it worth attempting these, and is there anyone who could recommend a specific treatment from that range of options? (It is quite confusing because we still don't know exactly what we are fighting against.)

To be honest, I am not even counting on the oncologist at the major hospital center; he wasn't even in a position to actually examine my father. He just flipped through the paperwork and typed on his computer. I believe the only thing he asked was about his current symptoms.

How many rounds of chemotherapy will he likely need to undergo? Has anyone here dealt with a similar situation?

Thank you all for taking the time to read this post.

wanderingwolf78 said:Hi everyone,

This is my first time posting here.
My dad first showed signs of illness in early June—fever, general weakness, and significant weight loss. About three months prior, he caught the flu and had his lungs imaged at Jordanovac due to some breathing issues. Those results came back clear.
Fast forward to now: they found multiple granulomas in his lungs, which biopsies confirmed are metastases. They also found a metastasis in his adrenal gland. The primary tumor has never been located. He’s completed two rounds of chemo, and we start the third this Tuesday. My biggest fear right now is the weight loss; since his last cycle, he's dropped another 4 kg. He started at over 100 kg and is now down to 86 kg.

Nobody has given us any concrete expectations regarding what to expect, how to manage his nutrition, or what medications we can access.

I'm looking for advice on what to give him to help him gain weight quickly, and whether we can get coverage through CMS.

What are your thoughts on "smart drugs" like ?
Is it worth trying them, and does anyone know who could recommend a specific drug from that massive list? It's incredibly confusing because we don't even know exactly what we're fighting against.

Honestly, I'm not even counting on the oncologist at the major city hospital; he didn't even have the decency to look my father in the eye. He just flipped through papers and typed on his computer. I think the only thing he actually asked was what symptoms he was having.

How many rounds of chemo will he have to go through? Has anyone dealt with something similar?

Thanks to everyone for taking the time to read this.

My advice? Try to find someone who will actually give him honest, thorough care and hunt down that primary tumor. Otherwise, all the surgeries, chemo, and radiation targeting the metastases are basically a waste of time. My dad's first cousin is currently in a terminal state because his doctors also failed to locate the primary site. It infuriates me when specialists act like they're searching through clouds, operating under the assumption that if their "brilliant" minds can't find the source, nobody else can😠. Take him somewhere else if you have to—don't waste precious time. I don't believe it's impossible to find the primary tumor.

Regarding nutrition, he is entitled to Prosure or Ensure shakes, which are carton-packaged drinks containing all the essential nutrients needed in a single serving. There's usually a small co-pay for the whole package, but otherwise, one carton is roughly $23 if I recall correctly.

Elizabeth Collins60 said:Mannitol definitely didn't cause pulmonary edema because it's a powerful diuretic used right here in the States during major open-heart surgeries. I don't see why you're linking mannitol to edema; if anything, it completely drains the system. And what exactly is this Boswellia stuff?

Every medication has side effects, and mannitol is known to trigger pulmonary edema.
It’s not up for debate that it's a diuretic. But when it hits the lungs via venous circulation, it can pull fluid there, leaving the lungs congested. That fluid is supposed to be cleared through respiration or heart pumping, but if the heart is even slightly weak, you end up with severe pulmonary edema.
Boswellia works by containing 5-LO (5-lipoxygenase) inhibitors. In other words, it reduces the activity of enzymes that produce inflammatory mediators and brain edema.
Leukotrienes... 🙂

Angela Wright said:My advice? Just find someone who’ll actually do their damn job and track down the primary tumor. Otherwise, all the surgeries, chemo, and radiation for the metastases are just a waste of time. My dad's first cousin is in terminal condition right now because his doctors couldn't find the primary tumor either. It drives me crazy when people start grasping at straws, thinking that if these "brilliant" specialists can't find the source, nobody will😠. Get him some outside help, even if you have to go out of state, and stop wasting time. I don't buy the idea that it's impossible to find the primary site.

Regarding food, he should be using Prosure or Ensure shakes—those cartons with everything you need in one go. There might be a small co-pay for the whole pack, but usually, one carton is about $23 if I remember right.

Unfortunately, they couldn't find my dad's primary tumor either. And he was treated abroad.🙄
I talked to him and an American doctor—they say in about 15% of cases, the primary site really is impossible to locate. Honestly, it pissed me off too... how can you not find the source???🤣 But I guess medicine has its limits.

Actually, what Christian Wood63 said felt spot on—that treatment is basically an art form and should be tailored to the specific individual. Doctors, because they lack knowledge or just don't have the time to focus on every single patient, try to shove everyone into these textbook stereotypes. That's probably why you see those weird stories where "hopeless" patients suddenly recover...

Maybe we also have a responsibility to listen to our own bodies throughout our lives—knowing what works for us and what doesn't. If you do that, you at least know yourself better when sickness hits. But that's a whole different conversation...😉

Christian Wood63 said:Every medication carries risks, and mannitol can lead to pulmonary edema.
It’s not just about being a diuretic. When venous circulation hits the lungs, fluid accumulates there. The body tries to clear it through breathing or heart pumping, but if the heart is even slightly weak, you end up with severe pulmonary edema.
Boswellia contains 5-LO ( 5 lipoxygenase) inhibitors. This means it reduces the activity of enzymes that produce inflammatory mediators and brain edema....
leukotrienes... 🙂

That's why turmeric—specifically curcumin—seems even more effective at this.

Drew Nguyen47 said:Unfortunately, even my parents couldn't track down the primary tumor. He was actually treated abroad.🙄
I’ve spoken with both an American doctor and one from overseas—they tell me that in about 15% of cases, they truly just can't locate the primary site. Honestly, it left me feeling pretty bitter; how is it even possible to miss the primary source???🤣 But I suppose medicine really does have its limits.

To be honest, what Christian Wood63 wrote hit home for me: treatment should really be an art form, tailored specifically to the unique traits of the individual patient. Instead, doctors—whether due to genuine ignorance or simply lacking the time to give anyone undivided attention—try to shove every patient into some textbook stereotype. And that's exactly why you see those bizarre stories of "hopeless" patients making miraculous recoveries.

There's probably also a responsibility on our part to listen to our bodies throughout our lives—to know what works for us, what makes us feel better or worse, and so on. That way, if illness does strike, we at least have some baseline knowledge of ourselves. But that's a whole different conversation...😉

It actually reminds me of the Račanov case. If I recall correctly, they only discovered his primary tumor was in the kidney after they were in Germany. Maybe you're right and that 15% really is untraceable, but that doesn't mean every missed diagnosis falls into that category. Based on how that oncologist (failed to) examine him, I’d bet it was more about a certain kind of pragmatism: "it's too far gone, so why bother wrestling with it?" Ugh, I know that type of medical mindset all too well. 🙄

[QUOTE579265]My advice would be to try finding someone who will actually take the time to deal with this properly and locate the primary tumor. Otherwise, all the surgeries, chemotherapy, and radiation targeting metastases are essentially pointless. My father's first cousin is currently in terminal condition because his doctors also failed to find the primary tumor. It absolutely infuriates me when people engage in wishful thinking, believing that if these highly trained specialists can't find the primary tumor, then nobody 😠 . If necessary, take him somewhere else; don't waste any more time. I refuse to believe it's impossible to find the primary source.

We went through a full MRI at diagnostics 2000, and they didn't find anything beyond those metastases in the lungs and adrenal glands. All of his tumor markers have come back negative, there's no blood in his stool, no urinary issues, and his kidneys and all other organs are perfectly fine.
We even considered going to Denver for a PET CT, but the doctors there suggested we probably wouldn't gain much insight and it would just put him through the unnecessary stress of traveling.

The issue is that Dad has such an intense gag reflex that it’s virtually impossible to perform a bronchoscopy or a gastroscopy. He’s also refusing any further testing because he simply can't handle it anymore. I’ve consulted three different hospitals, and they all reached the same conclusion: we need to start therapy immediately before the metastases spread further.

I honestly don't know if this stage has already progressed too far or if it's still realistic to hope for improvement. When we checked into the outpatient oncology unit, the doctor told me she wasn't sure if chemotherapy was even worth it, because the goal isn't to have the treatment kill him before the cancer does 😕 .
On the other hand, others have told us it's a good sign that his other results are solid—that there aren't metastases in his bones or vital organs. I am completely lost regarding the prognosis; I don't know if there is any reason to hold onto hope.
Mom is at home crying; she has practically already mourned him. She makes me feel guilty because I keep insisting that it's normal for him to have a fever, that it's normal for his blood work to look bad, and that it's normal for him to be weak and losing weight. Now, I'm starting to lose faith in my own words.

wanderingwolf78 said:We had a full MRI done at diagnostics 2000, and they didn't find anything except those metastases in his lungs and adrenal glands. All of his tumor markers came back negative, there’s no blood in his stool, no urinary issues—his kidneys and all his other organs are fine.
We were thinking about heading over to Denver for a PET CT, but the doctors there basically told us we probably wouldn't gain any more insight and would just be putting him through the ringer with the travel.

The problem is my dad has such a violent gag reflex that performing a bronchoscopy or a gastroscopy is practically impossible. He won't even agree to more testing because he just can't take it anymore. I asked three different hospitals, and they all agreed that we need to start therapy immediately before the metastases really take hold.

I don't know if this stage is already too advanced or if it's realistic to expect any improvement. When we checked into the oncology outpatient unit, the doctor told me she wasn't sure if chemo even made sense, because her goal isn't to have the treatment kill him before the cancer does 😕 .
On the other hand, others told us it's a good sign that everything else looks okay—that there aren't metastases in his bones or vital organs. I honestly have no idea what the prognosis is or if there's anything left to hope for.
My mom is grieving at home; she's already essentially buried him. It fills me with guilt because I keep repeating to her that it's normal for him to have a fever, that it's normal for his blood work to look bad, and that it's normal for him to be weak and losing weight. Now, I'm starting to lose faith in my own words.

Oh, 😢
What did they say about the possibility of it being some form of leukemia or lymphoma? A friend of mine was diagnosed with Hodgins at 16, and for six months, they kept passing her around from one specialist to another before finally realizing what it was. By then, she already had metastases in her chest. Luckily, she pulled through.
I really don't know what else to advise you besides seeking a second opinion. Maybe try to get copies of his records and send them somewhere else to be reviewed.
Try to be understanding with your mother. She can't function like this, and it's only going to make things worse for your dad. You're facing a massive obstacle and you have to find a way through it, but her constant weeping and mourning over a man who still wants to fight is completely counterproductive. You might need to be a bit firmer with her; if you don't, things will only escalate, and you'll end up carrying the weight of her grief on top of everything else, which is the last thing you need.
Don't dwell on the prognosis. My mother was hit with what was likely one of the worst types of cancer, and she has already defied the odds twice over. No one can tell you with 100% certainty what's going to happen. What you *do* know is that the cancer has to be treated ASAP—both the metastases and the primary site—but the primary is the most critical since everything stems from it. The issue here is that he feels so terrible that the big question is how chemo will even affect him, which is why that doctor said what she said. Try to work with the doctors to stabilize him somehow—maybe get him hospitalized so they can manage his symptoms enough to at least get him through some radiation. That might slow things down and buy you enough time to eventually uncover that primary tumor.
Hang in there. I know it's brutal, but eventually, something is going to give.

I need to jump in here and follow up on what @ivanicu said by stating a simple truth that seems to escape many doctors and the general public alike: every single day we live is worth fighting for because regardless of whatever obstacles we face, every individual life is unique and irreplaceable!
People usually don't wrap their heads around this until they or someone close to them falls ill. Of course, that isn't always the case, but unfortunately, it often is. You only get one life, and health is a value you simply cannot afford to take for granted. I know this firsthand through several painful experiences—losing my father when I was just a kid, nearly losing my mother, and my niece getting sick, though thankfully she pulled through. 🙂