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

Angela Wright, I’m glad you reached out. I’ve been following your posts closely, hoping you might have some insight into this paraneoplastic syndrome. I’d need to double-check if my dad actually had a CT scan with contrast, but right now, things are stuck. The doctors claim his rapid decline is driven by the syndrome itself, yet the "cure" is treating the tumor—which they can't do because he's too weak for chemo. It’s a vicious cycle. It feels like we're just spinning our wheels while precious time slips away. They stabilized his sodium and potassium levels, so now they just run blood work every single day and call it a day...
Robin Diaz4, ruggedfox11, I noticed you both mentioned beta-glucan and raw propolis. We started Dad on those the moment we got the diagnosis, even during chemo, because his doctor gave us the green light. I also read somewhere that it was safe. Now, looking back, I wonder if we made a mistake... I wasn't exactly making the smartest calls there.
Rachel Williams, I am so happy to hear about your mother; I truly hope things stay that way. It was a good call to mention RS oil. We picked some up yesterday, but when I asked the oncologist, he advised against giving it to him while he's in this state of confusion. To make matters stranger, I had a dream about Dad last night. He told me he came specifically for the oil. 😢

Robin Diaz4 said:So, does that one-week window where you scale down from a high dose to a low dose also count as being "between cycles," or should I avoid using anything during that time too?

If I were you, I’d just pause. It seems to me there's a reason the cycle is structured that way—the higher dose has a prolonged effect and clearly triggers certain biological mechanisms that need time to settle.

Anthony Rodriguez7 said:Angela Wright, I’m really glad you reached out. I’ve been reading through a lot of your posts and was honestly hoping you might have some insight regarding this paraneoplastic syndrome... I need to double-check if my dad had a CT scan with contrast. The doctors are claiming his condition is so dire specifically because of that syndrome, but then they say the only way to treat the syndrome is to target the tumor itself—except we can't treat the tumor because it’s completely resistant to chemo. It feels like we're trapped in this vicious, circular logic where we’re just spinning our wheels and wasting precious time. His sodium and potassium levels are finally stable, so now they're just running blood work every single day and that's basically it...
Robin Diaz4, ruggedfox11, I noticed you both mentioned beta-glucan and raw propolis. That’s exactly what we started giving Dad the second we got the diagnosis. We even kept him on it during chemo because the doctor said it was fine, and I'd read somewhere else that it was okay too. Now I'm sitting here wondering if we made a mistake... I clearly wasn't thinking straight.
Rachel Williams, I am so happy for your mom—I truly hope things stay that way. And thank you for bringing up RS oil; we actually picked some up yesterday. I asked the oncologist about it, but he advised against giving it to him while he's in this state (given how disoriented he is). But get this—last night I dreamed about Dad, and he told me he came back specifically for the oil. 😢

http://emedicine.medscape.com/article/280744-overview
http://www.epatientdave.com/2011/06/...n-boston-area/

Just from a quick skim of what I could find, I stumbled upon several cases where doctors successfully managed numerous neurological symptoms using cannabioids.
Do a bit more digging, print it all out, and then take it to the doctor to start a conversation.
If I were in your shoes, I’d give it a shot. There’s absolutely nothing left to lose.

I’m starting to feel like we have nothing left to lose. Honestly, this dream keeps haunting me—I can't help but wonder if God is trying to send us a sign, or maybe just some encouragement. Something, I guess.
We just got word that they might discharge Dad this Friday. His physical therapist made some progress; he actually managed to sit up and even stand on his feet. When they asked if he could see the church through the window or describe what was outside, he didn't react, unfortunately. But the doctor thinks being back home with us might give him the mental and physical boost he needs. Fingers crossed.
It is absolutely gut-wrenching to look at him like this, especially when he doesn't respond to us.
Once he's home, we'll have home health nurses coming by, and he'll need regular blood work to make sure his sodium and potassium levels don't spiral out of control again.
Thanks for the links. I’ll definitely look into them, though I've been down a Google rabbit hole for days already.
And once again, thank you, Angela Wright, for the reply, for checking in, and for all the time and effort you put into this. This forum helps more than I ever could have imagined.👍I'd send a heart icon if I knew how... but I'm still figuring this out.🙂

Magda, you really don't have anything left to lose here... Everything you're dreaming about—it's all just your subconscious working overtime. Whether it’s trying to process deep-seated fears or perhaps hinting at potential solutions, who knows? It's all happening beneath the surface.

The human psyche functions quite differently when you're actually home; your surroundings play such a massive role in how you settle back into yourself.

From what I've read regarding that specific syndrome, it's often just a direct consequence of the illness itself—essentially being treated as part of the primary condition. But, as for those cases categorized as paraneoplastic syndromes... those are specifically triggered by the presence of microcellular tumors.

I had everything all mapped out perfectly for before his fourth round of Chemo. My plan was simple: if they weren't going to order a PET/CT or a regular CT scan, I was going to step in—I’d just ask his primary care physician for the referral myself so we could finally get some real answers about what's actually happening. But then, I found out today that our "wonderful" local hospital here in St. Louis doesn't even have a PET/CT scanner on-site. Honestly, it’s just breathtaking how much I love living in this neck of the woods... total shitshow.

On the bright side, he seems to be doing a bit better. It’s warmed up lately, which I think helped because his leg has been swelling—just constant vein inflammation. His leg isn't bothering him quite as much, and he isn't coughing nearly as hard after using the clavocin, but man, he is putting on weight like crazy. He's pushing almost 200 pounds now, and since his legs haven't regained any strength or returned to anything resembling normal, I'm genuinely worried that having to carry himself around is going to absolutely wreck him.

ruggedfox11, does anyone have experience with Quest Diagnostics in St.? They just renewed their contract with Medicare, and they actually reached out to us to schedule my dad's appointment, but we had to push it back because of his condition. They told us to just give them a call whenever he's ready.

Anthony Rodriguez7 said:ruggedfox11, do you guys use Quest Diagnostics over in St.? They just renewed their contract with Medicare, and they actually reached out to us about my dad's appointment—though we had to push it back because of how he's doing lately. They told us to just give them a call whenever he's ready.

We do.
So that means it should be covered through Medicare.

Give them a call right away and ask. That contract should cover all their outpatient clinics... it really ought to.

According to their website, they offer CT scans in Orlando too. It’s covered by insurance if you have the referral, so just check it out and give them a call.

ruggedfox11;
You can actually get a PET/CT scan through Quest Diagnostics just like Magda mentioned, and since it's covered by Medicare, just give them a ring to set up an appointment... honestly, you don't even have to wait forever like you usually do in this slippery little city we live in

Today started off on a pretty rough note, but thankfully, things have taken a turn for the better... Around 3:00 AM, a nasty cough caught him off guard, followed by a fever first thing this morning. He’s currently on antibiotics and seems to be feeling alright now, though I can't help but worry that tomorrow might undo all this progress...

I’ve been doing a lot of thinking today. My dad has been home for the last week or so, and luckily, I’m self-employed, which means I can work from home or just step away when things get chaotic. But honestly, how on earth do people manage this if they don't have that kind of flexibility? Dad’s condition is a total rollercoaster; one day he’s steady enough that he could actually make it to an office, and the very next, he barely has the energy to shuffle to the bathroom. It makes me wonder—what happens if a situation arises where there’s absolutely no one available to stay with him? I mean, hopefully, that won't happen, but life is unpredictable, isn't it? These thoughts have been circling my mind all day, because if I hadn't been home today, the mere thought of being away would have terrified me...
Basically, does a service like this even exist, or am I looking at hiring someone privately? How does the whole system work? Is there such a thing as hiring a medical professional to drop in whenever needed—someone I can pay for their expertise without them being a full-time presence in my house? For instance, maybe just twice a month? Or am I just dreaming up nonsense here?

Robin Diaz4 said:I’ve been sitting here thinking about it today—Dad has been home for the last week or so. Fortunately, I’m self-employed, so I can work from home or just step away when things get chaotic. But how do people manage this if they don't have that kind of flexibility? Dad’s condition shifts constantly; one day he’s steady enough to handle a normal routine, and the next, he barely has the strength to make it to the bathroom. What happens if there’s a moment when no one can be home with him? It’s unlikely, but life is unpredictable, isn't it? These thoughts have been circling my mind all day; if I weren't home right now, the mere thought of it would terrify me...
Basically, is there some kind of service for this, or do I need to hire someone privately? How does that even work? Is there such a thing as a medical professional who comes by only when needed—someone I could pay to visit, say, twice a month rather than having them stay full-time? Or am I just overthinking things?

I'm currently in Austria, while my mom is on her own back in a major US city. On the good days, she's fine. But when things take a turn for the worse, a cousin will stop by over the weekend, or an aunt will drop in during the week to look after her. In theory, yes, it would be ideal to hire someone on an as-needed basis, but my mother would be the first one to lose her mind if a stranger were constantly in her house or if she had to rely on someone she didn't know.

Oh, please. My dad only listens to me. He won't even listen to Mom, so you can bet he isn't going to let some random stranger wander through the house right now...

Robin Diaz4 said:I was just sitting here thinking today—my dad’s been home for the last week or so, and honestly, I’m lucky enough to be self-employed, so I can work from my laptop or just take a breather if things get crazy. But man, how do people actually pull this off when they don't have that kind of flexibility? My dad’s energy levels are all over the place; one day he’s steady enough to face the world, and the next, even just getting up to hit the bathroom wipes him out. It makes me wonder: what happens if there’s a moment where nobody can be there with him? I mean, hopefully that won't happen, but life is unpredictable, right? These thoughts are just looping in my head today, because if I hadn't been home right now, the mere thought of being away would have terrified me...
Basically, is there some kind of service for this, or do I need to hire someone privately? How does that even work? Is there such a thing as calling a medical professional to come by when needed—like, I pay them for their time, but they aren't living with us, maybe just visiting a couple times a month? Or am I just talking nonsense?

Look, after reading what you wrote, I realized that unless you have immediate family around, you're pretty much on your own—aside from the fact that every local health department has home health nursing services available.
If you're looking for actual medical pros, give "Zorica" a call. I really hate being an advertisement for people, but I've had nothing but good experiences with them.

Robin Diaz4 said:I’ve been doing a lot of thinking today. My dad has been home for the last week or so, and luckily, I’m self-employed, so I can work from home or just step away if things get chaotic. But it makes me wonder—how do people manage this when they don't have that kind of flexibility? Dad’s condition changes by the hour; one day he could easily handle a full schedule, and the next, he barely has the strength to walk to the bathroom. What happens if there's a situation where nobody is available to stay with him? It probably won't happen, but life is unpredictable. These thoughts have been circling my mind all day; if I hadn't been home today, the mere thought of it would have terrified me...
Basically, is there some kind of service for this, or do I need to hire someone privately? How does it actually work? Is there anything out there where a medical professional comes by when needed—like, say, twice a month—where I pay them for their time without them being a full-time live-in caregiver? Or am I just dreaming up nonsense?

It used to be a real struggle and people just had to find ways to scrape by, but as of February 1st, there's a new law in effect that allows you to qualify for caregiver status for someone dealing with an illness this severe.

I suggested to my mom that she take some time off to care for Dad, but her employer basically told her they'd only consider it if he were terminally ill and completely immobile. Now, my dad isn't bedridden—and frankly, I refuse to accept the "terminal" label for as long as there's even a shred of a chance for treatment, regardless of how the law might define it. Does anyone happen to know the specific name of the law governing this? It would be incredibly helpful if someone could point me in the right direction!

stormyfalcon68 said:ruggedfox11;
You can get a PET/CT through Quest Diagnostics—just like Anthony Rodriguez7 mentioned—using Medicare coverage. Give them a call to set up an appointment; honestly, you don't even have to wait nearly as long as you usually would in this sluggish, slow-moving city we live in.

I actually managed to get a hold of them! They accept the red referral forms, though my wife did mention that I need to bring all of his medical paperwork with me when I go in to finalize the appointment time. Thanks everyone! :-)

Robin Diaz4 said:I was just sitting here thinking today—my dad has been home for the last week or so, and thankfully, I’m self-employed, so I can work from home or just step away if things get hectic. But honestly, how do people manage this when they don't have that kind of flexibility? My dad’s condition shifts constantly; one day he feels steady enough to head out, and the next, he barely has the strength to make it to the bathroom. What happens if there comes a moment where no one is available to stay with him? It’s unlikely, but life is unpredictable, isn't it? These thoughts have been weighing on me all day—if I hadn't been home today, I don't even want to think about what might have happened...
Basically, is there some kind of service for this, or would I need to hire someone privately? How does that even work? Is there an option where a medical professional could come by when needed—someone I could pay for occasional visits, say twice a month, rather than having someone stay full-time? Or am I just overthinking things?

I'm really not sure about the second part of your question.
But you should definitely check with Medicare regarding coverage for your mom and see what the rules are for caregiver leave; it's worth looking into.

As for your first point, I feel exactly the same way. I truly caught a break—being on maternity leave meant I could stay home and run drills, which allowed me to organize my own work schedule. That same worry crossed my mind recently, but I just felt so grateful to God that the baby arrived at just the right time. I honestly have no idea how people handle this when they’re forced to commute to an office every day.