Support for families dealing with cancer and other serious illnesses (Part II)

John Foster38, Carl Kern66
We’re just finding our way through one day at a time, I suppose... Please, take good care of yourselves and those you hold most dear. 😘

Carl Kern66 I don't know what kind of supplements you all swear by, but my dad has been taking beta-glucan, and his appetite is through the roof—honestly, more than I've ever seen. Apparently, this beta-glucan stuff is a powerhouse for the immune system; it supposedly prevents cancer cells from latching onto vessel walls and surviving... or something like that. I can't explain the science perfectly, but it works. It kicks the appetite into overdrive, too. I actually started taking it myself once when he did, and I could barely stop eating.
As for ginger, I truly believe it’s incredible for nausea. We toss a little bit into almost every cooked meal we make. It’s not like the nausea completely vanishes, but as he says—there's nothing to worry about. We also use licorice root; he even chews on it constantly, and it’s great for settling the stomach.

cosmiclynx14 said:Carl Kern66 I don't know what kind of supplements you guys are all using, but my dad’s been taking beta-glucan and man, his appetite is through the roof... like, unlike anything we've ever seen. Apparently, that beta-glucan stuff is killer for the immune system—it supposedly stops cancer cells from latching onto blood vessel walls and surviving... or something like that, I'm no doctor, don't ask me to explain the science. But seriously, it kicks the appetite into overdrive. I actually took it for a while when he started, and I could barely eat enough to feel full.
As for ginger, I swear it’s amazing for nausea. We toss a little bit into pretty much every meal we cook. It doesn't make nausea disappear completely, but like he always says—nothing to worry about. We also use fennel, and he even chews on it all the time; it works wonders for the stomach too.

He’s already on the beta-glucan, but it does absolutely nothing for his appetite. For the immune system though? It’s a total game changer. We saw that firsthand recently when Mom caught a nasty cold and he didn't get hit at all. Usually, he's super sensitive—if a neighbor sneezes three houses down, he's basically coming down with something.

Anyway, every single time it's time to eat or take a supplement, it turns into this massive ordeal. Honestly, we're just totally exhausted by the whole thing.

Where do you even find fennel? I might give that a shot.

And thanks 😍

Amanda Anderson87 said:He’s already taking beta glucan, but it isn’t doing anything for his appetite. It works wonders for immunity, though—we saw that firsthand recently when Mom came down with a cold and he stayed perfectly fine. Usually, he's incredibly sensitive; if a neighbor even sneezes, he catches whatever they have.

Basically, every single mealtime is an absolute battleground. We are beyond frustrated at this point.

Where can I find elecampane? I might give that a shot.

And thanks 😍

You can grab elecampane at the Whole Foods over in Westgate... I really hope things start looking up soon.
We find all sorts of stuff for him at that health food store. We’ve basically dedicated an entire cabinet to these supplements just so we can sneak them into his food. He refuses to eat most things otherwise. For example, we'll make cheese pastries with flaxseed oil and turmeric... he’ll polish those off like they're Oreos, but if I try to use flaxseed oil in a regular meal, he won't even go near it.

For now, we're getting lucky—he isn't needing any anti-nausea meds and seems okay. I know it's easy for me to act like I have it all figured out since we're still managing, but the real question is how much longer we can keep this up.

Hi everyone 😘, I spent last night reading through all your posts, though I honestly didn't have the energy to chime in myself. Between being completely exhausted and buried under an endless mountain of work, I’ve just been trying to scavenge for a few seconds of peace whenever possible.
My dad went in for his biopsy yesterday, and today Mom found out he’s being discharged tomorrow. Since his primary specialist is currently away on vacation, we had to rely on whatever information the on-call doctor could provide, which boiled down to this:
a) he’ll be heading home tomorrow
b) his condition is actually declining
c) we'll need to take him to a major medical center to see an oncologist once the biopsy results come back—his previous doctor shared his opinion before the results were even in, so we can't go back to him.

Mom got the news this morning, and both of us went to visit him in the afternoon, but I didn't manage to uncover anything new. He’s currently on an IV drip and receiving a transfusion, and his legs have been terribly swollen for days now.
It only just hit me that tomorrow is Friday.
To make matters worse, his primary care physician is also on leave. They don't start discharging patients until the afternoon, so my hands are tied all morning until I finally get that discharge paperwork in hand. I am wondering if the hospital is required to ensure his treatment plan covers the weekend.

So, I'm checking in too... honestly, I don't even know where to start. My dad has been constantly vomiting, dealing with diarrhea, pain... he’s probably lost like 45 pounds in just the last month or so. After my sister—who's a doctor—kept pushing for it, his physician finally wrote him an order for hospitalization. Right around then, the CT scan results came back... and it was a total nightmare. His thyroid, lungs, liver, adrenal glands... everything is riddled with metastases. There's a cyst on his kidney, too. Now he's at the hospital and they're repeating the abdominal CT. It's pancreatic cancer and colon cancer. He had a colonoscopy, obviously because I insisted on it being done under anesthesia. They put in a nasogastric tube, he's on constant IV fluids... and today they gave him a morphine patch. We're all still just in complete shock. The doctors are being so stingy with information, I don't even know... I guess I wanted to ask if anyone here has experience dealing with such an aggressive form of cancer, especially having two types hit at once?

Maria Howard70 said:I guess I’m checking in too... honestly, I don't even know where to start. For the last month, my dad has been constantly vomiting, dealing with diarrhea, pain... he's dropped about 45 pounds in just those few weeks. After my sister pushed for it, his doctor finally wrote him an admission order for the hospital. Right around then, the CT scan results came back... it's a nightmare. His thyroid, lungs, liver, adrenal glands—everything is riddled with metastases. There's a cyst on his kidney, too. Now they're repeating abdominal scans at the hospital. It's pancreatic and colon cancer. He had a colonoscopy, which, obviously, I insisted on while he was under anesthesia. They've put in a nasogastric tube, and he's on constant IV fluids. Today, they gave him a morphine patch. We're all still in total shock. The doctors are being incredibly tight-lipped with information, too... I don't even know what to ask. Does anyone here have experience dealing with such an aggressive form of cancer, especially when it hits two different places at once?

Ugh, hang in there, honey. 😢
I am sending you so much strength and courage. Sadly, there isn't much I can say to make this better. Based on everything you described, it looks like things moved into an advanced stage incredibly fast—like a wildfire.
Just stay strong and try to be the pillar for your dad and the rest of your family.

feralsurfer72 said:Hey everyone 😘 , I was reading through everything you all posted last night, but I just didn't have the energy to jump in. I am absolutely wiped out and buried under work right now, so I'm basically just scavenging for seconds of peace.
My dad went in for a biopsy yesterday, and today my mom found out he’s being discharged from the hospital tomorrow. Since his primary specialist is on vacation, the on-call doctor gave us the bare bones:
a) He's getting out
b) His condition is actually declining
c) We’ll need to take him to a major medical center to see an oncologist once the biopsy results come back (his previous doctor gave his opinion before the procedure, so we can't go back to him).

Mom found out earlier this morning, and we both went down there this afternoon, but I didn't get any new info. He’s currently on an IV drip and receiving a transfusion; his legs have been incredibly swollen for days.
It only just hit me that tomorrow is Friday.
To make matters worse, his primary care physician is also on vacation. They don't discharge patients until the afternoon, so I'm stuck in limbo until I actually get the discharge papers in hand. I'm wondering if the hospital is required to ensure he has enough medication to cover the weekend.

I don't think they're legally obligated to, but they can definitely be flexible if you ask nicely. In my experience, they gave me enough meds to take home when I was discharged on a Friday. Beyond that, once you have those discharge papers, any local pharmacy can fill the prescription based on them. You pay upfront, then you get reimbursed once you present the official script from the doctor's office (either his regular doctor or whoever is covering for him—usually just the doctor on the opposite shift).

Called the hospital... caught a fever... just felt like everything was gonna blow up on me...

First off, I have to say that both my mother’s results and my own look quite good. 🙂

My mom —she’s battling breast cancer with bone metastases—has completed 12 rounds of chemo and hasn't had radiation yet. She was in her second month when she went for that bone scan (I can't recall the technical term), and the report shows that the larger clusters of metastases have shrunk or split up, while some smaller ones have vanished entirely.
I assume this is the chemotherapy working its magic, but I find myself wondering if these improvements will hold steady or if they're just temporary.
Angela Wright, have you ever heard of a single shining example of someone actually beating this?

Mom has completely overhauled her diet—cut out all the sugar—and she's been in such high spirits since getting these results. She also underwent a CT scan of her head because she’d been complaining about headaches and feeling like "something wasn't right upstairs." We have the report and are just waiting for an appointment with a specialist. To be honest, most medical reports look like gibberish to me; I was staring at hers like it was written in ancient Greek, but apparently, it’s positive since every single line noted "normal findings."

Honestly, I wouldn't even be surprised if she pulls through. This is her fifth bout with cancer—breast, uterine, melanoma, thyroid, and now breast again. She is one tough woman.

As for me, I’ve started going in for regular checkups. Next week, I’m heading to see a neurosurgeon with my MRI results. The report itself came back clear, though we still need the neurosurgeon to give the final word.

I’ve survived six years so far. At this rate, I should probably live long enough to finally pay off my mortgage, and until then... well, there's plenty of time. 😍

Angela Wright said:I don't think they're strictly required, but I can certainly try to help if you ask. In my case, they provided me with a home prescription for other reasons since I was discharged this past Friday. Beyond that, if you have your discharge papers, local 24-hour pharmacies can usually issue a prescription based on those; you just pay upfront and get reimbursed once you bring in the official script from his attending physician (either the primary doctor or whoever is covering for him, typically someone from the opposite shift).

Thanks, Angela Wright! 😘 We actually just pulled into the driveway a little while ago. Our plan is to try coordinating with his primary doctor first, and if we hit a wall, we’ll follow your advice and head to the pharmacy. My dad was only given a temporary discharge summary for now; I suspect he won't get the full official paperwork until his lab results are finalized and his doctor returns from vacation. We're all hoping to have a relatively calm weekend at home with him—fingers crossed—before we figure out our next move. It's hard to make any concrete plans or even schedule an appointment with the oncologist until we have the pathology report in hand.

Wishing you all a peaceful and lovely weekend!

feralridge3 said:Angela Wright have you ever actually heard of a shining example of someone who successfully cured themselves?

That depends entirely on how you define "cured."
For God's sake, your mother has survived four different carcinomas that never even came back, until this breast cancer issue... personally, when dealing with malignant diseases, I wouldn't obsess over a total "cure" as much as I would focus on survival. If by cure you mean remission, then yes, that happens during the process, but there is absolutely zero guarantee that this crap won't happen all over again.

I've heard just about everything since I've been in this fight back in 2005. What matters is living a quality life and seeing things improve... as for what comes next, God only knows.

Hey everyone... my dad passed away last night... I guess he's watching over us from above now.😢

Maria Howard70 said:My dear friends... my dad passed away last night. May the angels watch over him.😢

Look, honey, please accept my deepest, most sincere condolences. 😢
I know there’s no such thing as a silver lining when you lose a parent—nothing really touches that kind of void. But eventually, it might bring you some peace to think that God spared him from further suffering, and kept him right there by His side.
May they rest in peace now. I’m wishing you and the rest of your family nothing but true peace of mind and heart as you lay them to rest.

Maria Howard70, I am so incredibly sorry for your loss. I know there aren't any words that can actually make this better right now, just hang in there...

Maria Howard70, I wanted to send my deepest condolences to you and your family during this difficult time. Please take care of yourself.

Maria Howard70, I am so incredibly sorry for your loss😢.

Back again with more questions.
My grandpa just had a CT scan and a follow-up, and it turns out they managed to get the whole tumor out of his abdominal cavity (🙏), but it’s spread to his lungs—the doctors are seeing shadows there. His doctor told him it’s the kind of cancer you can actually live with for years, provided he gets on this specific medication. He won't need radiation or chemo.
The catch is, this drug is insanely expensive (his wife said one box goes for $40,000) and she’s waiting on the medical board to approve the prescription. Does anyone have any idea how long the wait usually is for a decision like that?

Maria Howard70 said:My dear friends... my father passed away last night. May he rest in peace.😢

My deepest condolences to you and your family. I truly wish you all the strength and courage in the world right now.

Maria Howard70 said:Hey everyone... my dad passed away last night. Rest easy, Dad... I know the angels are watching over you now.😢

Maria Howard70, I am so incredibly sorry for your loss. 🙂 Rest in peace to your dad. I’m really hoping you and your family can find some actual peace of mind during this.

Angela Wright said:It really depends on how you define "healing."
My mother has actually beaten four different carcinomas over the years without a single recurrence—until this current breast cancer issue. Personally, when dealing with malignant diseases, I wouldn't obsess over the concept of a total cure as much as I would focus on survival. If by healing you mean remission, then yes, that happens during the process, but there is absolutely no guarantee that this crap won't come back to haunt you.

I’ve heard just about every theory under the sun since I entered this fight back in 2005. The bottom line is to live a high-quality life and hope things improve... as for what comes next, God only knows.

That is essentially my mindset.
Acquaintances frequently ask me if I am "cured." Usually, I tell them that I can't be cured; I simply live with it and see how far I get (it's been six years so far).
Many people fail to grasp that this isn't like recovering from a broken leg; it is an ongoing coexistence with malicious cells that could resurface at any moment. 🙄

It took me a long time to finally start relaxing and somewhat acclimating to this uninvited guest who can ring the doorbell at any second and say, "Hey, I'm back." 🙂 I will say that seeing a therapist has genuinely helped. I don't fret quite as much about the future anymore; instead, I strive to live day by day. If something is out of my control—like corporate restructuring or layoffs at work—I don't panic or exhaust myself over it. I just tell myself: whatever happens, it isn't worth sacrificing my health for. It also helps that I am nearly deaf; people tend to take every story or opinion they hear at face value and live in constant fear because of it. I remain calm simply because I don't hear half of it. 😍

Honestly, all this bullshit I've been through has brought some good things into my life too. 🙂