Resources and support for families dealing with cancer and serious illness

Donna Harris77 said:When it comes to your own mother—I am certain she would appreciate it if you occasionally lifted her spirits with a bit of humor and actually helped her see her plans through. You really ought to sit down with her and ask what kind of support she needs to manage everything—from daily chores and doctor appointments to simply getting some rest... Every bit of assistance is invaluable, but nothing carries quite the same weight as help coming from one's own child—believe me on that...

Seeing this level of concern for your mother is quite heartening—it serves as a reminder of how a mother looks after her child from day one right up through to the present moment—every single day! One can only truly learn the nuances of love and care within a family, and it seems yours is providing an excellent education...

I find myself in complete agreement with this sentiment! I see the truth of it firsthand in my own home, realizing just how much it matters when I tell my mother that I want to help and insist that she allows me to do so. She constantly tries to handle everything on her own, attempting to prove her strength and maintain her independence, yet there is a very specific moment when she falters... and you can truly feel the impact when someone in the house steps in to assist, seeing that smile of gratitude for everything she has done...

Only a family standing by a loved one during illness can truly grasp how profound and powerful that bond remains...😉

My husband is currently on his third cycle of the DTIC protocol. They pulled some blood work today, and unfortunately, his liver enzymes are looking a bit rougher than before.

Back on Friday, his IBM levels were at 62—with the upper limit being 38—and his ALT was sitting at 51, just barely over the 48 threshold. It didn't seem like a cause for panic at the time.

But today, that IBM number jumped up to 126. They’ve run some hepatitis markers now, so we’re stuck in this agonizing waiting game. He had surgery last year and went through several transfusions involving blood and plasma, among other things.

Is it actually possible that after fighting cancer, he's now facing a potential hepatitis diagnosis? We're essentially in limbo right now. I'll update everyone once the results come in. Hang in there.

slyseal28 said:My husband is on his third cycle of the DTIC protocol today. They pulled his blood work and those liver tests are looking worse.

On Friday, his IBM was at 62 (with the upper limit being 38), and his ALT was 51 (limit is 48). It didn't seem like a huge deal until today.

Today, his IBM jumped to 126. They ran hepatitis markers, so now we’re just stuck waiting. He had surgery last year and received blood transfusions and plasma and all sorts of things.

Is it possible that after dealing with cancer, he’s now facing hepatitis too? We're currently in the ICU. We'll update you when the results come in. Hang in there.

Those enzyme levels are up because the liver is simply getting hammered by the chemo. Think of it this way: chemo is essentially a toxin that the liver is forced to filter out. If you think his numbers are high, look at my mom’s recent labs and compare:
ALP 184 (64-153)
IBM 159 (8-30)
ALT 319 (10-36)
GGT 2795 (9-35)

I highly doubt this has anything to do with hepatitis; it’s almost certainly the chemotherapy.
In my mom's case, her values are trashed because she’s on Phenytoin, which is brutal on the liver, and the dexamethasone plays a massive role in that too.

Angela Wright said:Those enzyme levels are elevated because the liver is essentially being taxed by the chemotherapy. It’s a toxin that the liver is forced to filter out. If you think his numbers look high, just take a look at my mother's most recent labs for comparison:
ALP 184 (64-153)
AST 159 (8-30)
ALT 319 (10-36)
GGT 2795 (9-35)

I don't see any connection to hepatitis here; it's strictly the chemo at work.
My mom has similar readings because she's on Phenobarbital, which hits the liver hard, and the dexamethasone plays a massive role in that too.

That’s great, thanks for letting me know. I was starting to spiral a little bit there. Even that specialist at the Mayo Clinic spooked me with those markers. Though, I suppose it might not be such a bad thing if they react immediately and run checks. Thanks again.😘

brightgardener8 said:I don't know who you think you're talking to, but if you're looking for someone to dance to your tune, you've got the wrong person. Stick to the facts or don't bother posting at all.Dexamethasone is a corticosteroid with an incredibly broad range of applications, from what I can gather. Take a look at... The provided link leads to a technical breakdown regarding the pharmacology of certain substances. Given the complexity of the data presented, it’s clear that understanding how these compounds interact with the human body requires more than just a surface-level glance; it demands a deep dive into metabolic pathways and receptor affinities. It's much like trying to map out the intricacies of a complex electrical grid in Chicago—you can see where the lines go, but without knowing the load capacity and the resistance at every junction, you're essentially flying blind. One cannot simply look at a chemical structure and assume they understand its physiological impact without accounting for the nuances of absorption and distribution.The code is used specifically to reduce brain swelling from tumors, but I’m not too sure about its application for other conditions. Maybe Angela Wright can weigh in with more detail—she’s already finished her PhD in pharmacology.😉

Dexamethasone is basically used to dial down swelling in any kind of tissue—whether we’re talking about soft tissue elsewhere in the body or brain swelling caused by a tumor. When it comes to the brain, though, you have to go much heavier on the dosage. Unlike most other parts of the body where swollen tissue has some room to expand, the brain is trapped inside the skull. It’s a closed system. There is nowhere for that pressure to go, which is why that specific type of swelling is so dangerous; it leads to neurological glitches and can ultimately plunge a person into a coma. The catch is that while these steroids work, they absolutely wreck you in other ways. You’re looking at spiked blood sugar, that unmistakable "moon face" bloating, skin sensitivity, and it even messes with your mental state. Honestly, there’s a whole laundry list of side effects that I won't even bother listing because it’s just depressing. But when you're fighting edema, you don't really have a choice—it's the only thing that actually gets the job done.

slyseal28 said:Great, thanks for getting back to me. I was starting to spiral a little bit. And that assistant professor really spooked me with those lab markers. Though, maybe his quick reaction and constant checking isn't actually a bad thing? Thanks again.😘

My mother had wild numbers for her transaminases and the enzymes you mentioned—including her GGT,
I think, though I can't be certain. We might have actually sorted it out using those subcutaneous aloe vera ampoules, since that was the only thing she was taking at the time.
Those are apparently only available over in Russia, but if anyone knows if they can be found here in the States, let me know so I can swing by and grab some...

Angela Wright said:So, basically, dexamethasone is used to bring down swelling in any kind of tissue—whether we're talking about the brain or other parts of the body where tumors cause inflammation. But here’s the kicker: when it comes to the brain, the doses have to be way higher because you're dealing with an organ tucked inside a closed space, like the skull, so there's absolutely nowhere for that swelling to go! It can't just expand outward like other tissues in the body can, which is why that pressure causes such scary neurological issues or even leads to someone falling into a coma. It's intense! And unfortunately, while these steroids are total lifesavers, they definitely come with a heavy price tag in terms of side effects. We're talking blood sugar spikes, that "moon face" look from fluid retention, skin sensitivity, and it can even mess with your mental state... honestly, there's a whole laundry list of stuff that's probably better left unsaid because it's just so overwhelming, but when you're fighting edema, it really is the most effective tool we've got.

Thanks so much, ladies! 😘

Christian Wood63 said:My mom had those exact transaminase and enzyme levels you mentioned, including the elevated gamma GT.
I honestly think we managed to sort it out using subcutaneous aloe vera ampoules because that was the only thing she was getting at the time.
That stuff is apparently only available in Russia, but if anyone knows if it can be found here in the States, let me know and I'll go grab some...

Tell me, besides the Phenobarbital my mom is taking, what else could be hitting her liver this hard?
On top of the Phenobarbital, she’s on Dexedrine, Ranitidine, and she recently switched from Glucagon to Glipizide for her blood sugar. My late grandmother was diabetic too, and they had to pull her off the Glucagon because her kidneys were failing, so I already know these things hammer the kidneys—but what about the liver? I brought this up when I was talking to my mom's internist about her situation, but the doctor just stuck with the Glipizide. Honestly, every time I mention something I read or heard about potential side effects, they just wave me off. They basically tell me there's no reason to worry about liver issues when she's fighting a glioblastoma; they argue she'll succumb to the tumor long before she ever develops something like cirrhosis. 😠 It feels like my input on this is completely useless.🙄

slyseal28 said:My husband is currently on his third cycle of the DTIC protocol. They drew blood today, and his liver enzymes look worse.

On Friday, his IBM was at 62 (with the upper limit being 38), and his ALT was 51 (limit is 48). It didn't seem like such a massive deal back then.

But today? His IBM hit 126. They ran tests—markers for hepatitis—and now we’re just stuck waiting. He had surgery last year and received blood transfusions and plasma and all sorts of things.

Is it actually possible that after dealing with cancer, he's facing hepatitis too? We are in the ICU right now. We'll update you when the results come in. Hang in there.

The numbers you're reporting aren't concerning at all; this is perfectly normal and to be expected during chemotherapy. So don't worry. Hepatitis?! Please.
Just stay strong.

My dear father’s condition has taken a turn for the worse. He has completely stopped leaving the house, and by Monday, he had retreated entirely into himself—disoriented, rambling, just... lost. I rushed him to the neurology ER, and what did they do? Of course, they gave him a little Mann, some Dex, and sent him straight home. To make matters even more infuriating, they couldn't even find a vein properly, so all that Mann was essentially wasted. I have since gone through the trouble of organizing everything to secure those IV infusions so I can administer them myself at home. As if things weren't difficult enough, I just started a new job where I am working grueling hours from 7 AM until 8 PM, only to rush back to his side and catch a few hours of sleep whenever possible. I am utterly exhausted. My brother hasn't offered a single shred of help... and my heart is just breaking. I keep writing and writing... though I don't even know why, or for what purpose.

Elizabeth Collins60 said:My dear father’s condition has taken a massive turn for the worse. He won't leave the house anymore, and by Monday, he just completely shut down—total disorientation and nonsensical rambling. I rushed him to the ER neurology department, but of course, they just gave him some Mann, a bit of Dex, and sent him straight home. To make matters even more infuriating, they couldn't even find a vein properly, so all that Mann was just wasted. I've been scrambling to organize everything so I can administer those IV fluids myself at home. If things weren't already bad enough, I landed a job where I'm working grueling shifts from 7 AM to 8 PM, then rushing back to him just so he can sleep for a few hours. I am absolutely running on empty, and my brother hasn't lifted a single finger to help... my heart is just breaking. I keep writing and writing... though I don't even know what I'm doing or why.

You're going to pull through this. You need to call your brother out—be polite, but be sharp. Tell him it's time to step up and actually get involved. Let him know you are reaching your breaking point. Look, women are built differently; we can endure things men can't even begin to wrap their heads around. Just remember that.😘

Earlier this evening, I was walking back from visiting my little niece with Rib (she’s making small strides every day, though she hasn't quite mastered using the bathroom on her own yet, which remains a hurdle) when I saw something at the main entrance that stopped me cold. A young girl, bald and looking incredibly fragile, was sitting there on a gurney, surrounded by doctors, her mother, and a nurse... she was just sobbing. I couldn't make out the specifics of the conversation, but I caught one doctor saying that this time, things simply couldn't be done painlessly, and an ambulance was being called to take her home. It was obvious she's battling cancer; she looked skeletal.
Despite everything life has thrown my way, I have never felt the weight of that old, almost cliché proverb as clearly as I do right now: "A healthy person has a thousand wishes, but a sick person has only one"—a truth that hit me with brutal force tonight while watching that young, broken soul, a complete stranger, lose her spirit before my eyes.

Elizabeth Collins60 said:My dear dad's condition has gotten so much worse. He’s stopped leaving the house entirely, and by Monday, he just completely shut down—disoriented, talking nonsense... I'm running on empty here. My brother hasn't offered any help at all... and honestly, my heart is just breaking. I keep typing and typing... and I don't even know what for or why...

When you lie down in bed, make a firm decision right then and there: you aren't going to think about anything. Just let your brain go blank. And while you're lying there, the next thing that'll definitely happen is this—you won't be able to stick to your decision, and those intrusive thoughts will start "racing" and attacking your consciousness, forcing you to fight them.

Stay firm. Tell yourself again that you aren't going to dwell on things. Let those intrusive thoughts spin around as much as they want—don't try to consciously follow the chain of thought. Just watch how the rhythm of those thoughts starts to slow down on its own. They might still be racing, but you just lie there calmly and observe those thoughts that aren't actually yours, because they need time to untangle themselves.

That process of calming your mind can take weeks, though for some people, the mental noise dies down in just a couple of days. When those intrusive thoughts don't hit any resistance, they don't gain momentum, and their power fades. Once that grip weakens, you'll find you can get ready for a new day of heavy lifting after just 2 to 4 hours of rest. Four hours of deep, quality rest can feel better than 8 hours of sleep. Rest isn't time for your brain to work overtime—rest is when everything needs to stop so you can recharge.

The daytime is for solving problems and making decisions. The daytime is for 😕, while resting and sleeping is for 🙂, and thanks to a higher intelligence, I ended up putting symbols in this text that I couldn't even decide on myself.

Angela Wright said:Aside from the phenobarbital my mother is currently taking, what else could be hitting her liver this hard?
Aside from the phenobarbital, they’ve started taking Dexedrine, Ranitidine, and recently switched from Euglucon to Glimepiride to manage their blood sugar.🙄

Ranisan? Never heard of it. Glimepiride is notoriously difficult to manage. Then you have dexamethasone, which causes fatty liver issues, and that’s where the detoxification process happens—but we're talking about an overwhelming amount of medication here. It makes you wonder. And let's not forget how Hemoton always works to stabilize the liver by addressing those mediators and toxic metabolites that tend to accumulate there.
I am not giving my mother dexamethasone from my own supply, and I have already explained my reasons for that.
She’s feeling even worse today. Honestly, though? I think she’s actually just dealing with a virus, exactly like she claims.
I’m scheduled to run her blood work and biochemistry panels in a day or two. Once I have those results, I'll be able to dig into a much wider range of parameters. Only then will I be prepared to present my full, detailed assessment to you all.
.
Take my advice: steer clear of any supplement, food, or medication that puts unnecessary strain on your liver. If you stop overloading your organs and actually focus on a proper diet, you can bring those blood sugar levels down to a decent range. It really isn't that complicated. Why make things harder on your body than they need to be?
What does it actually mean when enzyme levels spike? Does it signify a crisis, or is it just statistical noise? It’s a valid question. Even if a slight elevation doesn't feel like a life-altering event right now, the goal remains the same: you need to bring those numbers back into the normal range. Stability matters. Normalization matters. Why leave it to chance?
There is an extract derived from Boswellia serrata that acts as a 5-LO (lipoxygenase) inhibitor, rooted in Ayurvedic medicine. Here is the reality: it must be administered in extreme doses—anywhere from 1 to 3 grams. Anything less is useless. In fact, taking insufficient amounts might actually feed the tumor. However, when done correctly, a single dose can significantly reduce brain edema. Is there any reason to settle for anything less than maximum efficacy?
Every single medication creates some level of chaos within the body. If you want to minimize that disruption, isn't it obvious that you should start by cutting out anything unnecessary? You have to eliminate the conflicting substances that cause harm and stick to the absolute minimum number of drugs required. Why take more risks than you have to?
Doctors? Please. They just wave their hands at any complication that arises. That’s always their go-to move when they want to get under your skin.
There is always an alternative to everything. Perhaps I have it easier because I realized a long time ago exactly where modern medicine falls short. To be honest, I’ve never been a fan of pharmaceuticals—it’s just not my philosophy when it comes to healthcare. Some things in life are unavoidable, sure. But most things? Most things can be bypassed if you know where to look.
You have to read everything. You have to know everything. And, of course, you have to believe that God is on your side.
Fortune favors the brave, sure. But let’s be honest: fortune really favors those who actually know what they're doing.

Can someone please lay out exactly what feeds a glioblastoma? I need to know what to cut out of the diet immediately because I suspect I might be making mistakes somewhere. What should I be avoiding? Thanks to everyone.🙏 😘 👍 😬 😎

Christian Wood63 said:r
Can someone please list out what actually feeds a glioblastoma? I need to know what to cut out because I might be making mistakes somewhere... cheers everyone🙏 😘 👍 😬 😎

Thanks for the response.

An old neurologist we used to see once told us to steer clear of anything containing Vitamin B16 (dimethylglycine), also known as DMG, since it supposedly fuels tumors. It’s mostly found in meat, which makes macrobiotics seem like an ideal way to eat

Could you look into whether you can find more info on that Drug candidate?

Angela Wright said:Thanks for the reply.

An old neurologist once told us to steer clear of anything containing vitamin B16 (dimethylglycine), also known as DMG, because it supposedly feeds tumors. Since it’s found in meat, macrobiotics would probably be the ideal diet.

Can you look into more details regarding the Drug candidate?

I've been looking into their pitch, but I don't have a firm opinion yet.
I need to do more reading. You know how Americans are—they always think a vaccine is the silver bullet for everything.
The whole story about dendritic cells is interesting, but they’re always hiding something to protect technology that someone likely sold them for a massive profit.
I'm confident I'll dig up more specific data on its application, mechanism, and actual effects.
Even the use of Bevacizumab—Target—has its own strange history, but its target is well-defined. Still, it doesn't have a hundred percent success rate, and the side effects can be brutal, like stomach perforations.

briskbison27 As stated by:
Earlier this evening, I was walking back from visiting my little niece with Rib—she’s showing some improvement every day, though she hasn't quite regained control of her bladder or bowels yet, which remains a concern... As we passed the main entrance, I noticed a young woman on a gurney, her head completely bald, surrounded by a group of doctors, her mother, and a nurse. She was weeping... I couldn't make out the specifics of their conversation, but I did catch a physician mentioning that this particular procedure wouldn't be painless before they rushed her back home... It was quite evident she’s battling cancer; she looked terribly frail...
Despite all the various tragedies that have crossed my path throughout my life, I find myself realizing with newfound clarity—perhaps even bordering on the cliché—that certain old adages hold more truth than I ever cared to admit... A healthy man possesses an endless list of desires, whereas a sick one finds himself possessed by only one... It was like seeing some young, unrecognizable creature tonight... a being whose body and spirit both seemed utterly shattered...

It is truly difficult to witness a disease systematically strip a person of their strength, especially when they are still so young... I am still struggling to wrap my head around the reality that my mother's physical appearance has completely transformed in just two short weeks, yet she continues to insist that her weight hasn't changed at all since the diagnosis...

Listening to everyone else's stories, I can't help but wonder just how fortunate I truly am to still be standing here, healthy and strong...

Hang in there...

Does anyone happen to know where I can pick up Target, what the damage is on the price tag, or how one actually goes about getting into a study run by Roche? Thanks!

slyheron84 said:Does anyone know where I can order Target, what the price looks like, or how to get into a Roche study? Thanks!

I actually stumbled upon some info regarding that right here:

You should probably check in with the oncology department at Mayo Clinic to ask about this; they'll definitely know where the treatment is being administered if it isn't happening at their facility.

slyheron84 said:Does anyone know where I can order Target? How much does it cost, or how can I get into a Roche study? Thanks!

You’re going to have to talk to an oncologist who needs to write a prescription for it; from there, you can order it through any private pharmacy. Though, honestly, I’m worried about the price tag. $667It’s going to be expensive, at the very least.