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

northernviper183 said:I just stumbled upon this—has anyone heard anything about these mushrooms and whether they actually help?

http://www.healthandwellness.com/mushroom-remedies-for-lung-cancer/

I heard you—they reached out to me regarding the discharge papers. It looks like the next round starts in 10 days $1667, even though they "really" need 20.

In my personal opinion, those are likely Papilova—I tend to call them "predatory mushrooms"—because compared to Mueller or DM, they are way, way cheaper.

ruggedfox11 said:Listen, they sent over the discharge papers and called me. They're looking at a 10-day cycle $1667, but they actually "need" 20.

In my opinion, those are just fakes—I call them "mushroom decoys"—because you can get stuff like Mueller or DM way, way cheaper.

I’m with you there. It’s nothing more than beta-glucan. You can buy it in a concentrated capsule form, maybe about $233 per box. It’s much easier to take than the raw stuff, which half the people I know can't even smell without getting sick to their stomach. I’ve heard plenty of stories about people wasting huge amounts of money on supplies that just end up rotting because they couldn't handle them.

As for having a "Plan B," my best advice is to Google clinical studies for new drugs and try to get yourself enrolled. Once you're in a trial and it turns out the drug actually works for you, the pharmaceutical companies will often provide it for free indefinitely, even after the study wraps up. That’s a massive win, especially if we're talking about some incredibly expensive biologic therapy.

https://clinicaltrials.gov

Everything is published here; it’s easily 99% of all relevant global trials. Just plug your diagnosis into the search bar and go. There’s even a world map that shows exactly how many active studies are running in each country.

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dustyscout8 said:I get it... you really need to have a Plan B ready. I'm hoping they’ll at least give you a ballpark figure. Apparently, they don't want to provide specific prognoses or pricing until they've done a full review of everything on their end? It feels a bit off that they haven't replied via email yet—honestly, it's not the best way to handle things. Perhaps it might be worth giving them a call if you still don't hear back?
Keeping my fingers crossed for you... Is your husband experiencing any pain? And if you don't mind me asking, how long has it been since the initial diagnosis?

They finally got back to me, but only after I made it clear that we actually intend to seek treatment there—as if they were just looking for a payday and couldn't give me a rough estimate without a reason! :-)

They said they've passed the medical records along to the specialists and that they'll reach out soon.

ruggedfox11, yeah, it’s obvious as day... it's all just about the money, isn't it?😢 It’s absolutely appalling; I don't even know where to start. This entire country is failing us. You can blame the people in power or the entire broken system for why we can't get our loved ones the treatment they need, but the reality remains: everything is fundamentally backwards and dysfunctional. It is completely unacceptable that once someone receives a diagnosis as devastating as cancer, they are met with nothing but endless waiting, bureaucratic committees, and pointless meetings. Just constant delays. They deny you access to more effective medications because of their rigid, nonsensical rules. It’s a nightmare. What does a human life actually mean to them? Why isn't the system designed so that the moment someone falls ill, they receive immediate therapy instead of being stuck in this loop?

dustyscout8 said:ruggedfox11, yeah, obviously... it’s all just about the money.😢 It’s disgusting, honestly—I don't even know what to say. This whole country is a mess. You could blame everyone in power or the entire broken system for why we can't save our loved ones, but the reality is that everything is fundamentally backwards. It’s insane that once you get a diagnosis as brutal as cancer, all you get is a waiting game—waiting for their pathetic boards to meet, waiting for "consultations," just endless waiting. They deny you access to more expensive drugs because of their own arbitrary rules. It's a horror show. What does a human life even mean to them? Why isn't the system built so that anyone who gets sick receives therapy IMMEDIATELY?

The truth is, America doesn't have the resources to cover this, and trying to fund healthcare at that level pushes us way past our actual means. That is a brutal, cold fact, regardless of how much we believe that access to medicine should be a basic human right. Globally speaking, our planet is nowhere near achieving that. In fact, there are maybe a dozen countries out there, like Canada or Australia, that actually have systems somewhat organized to handle it.

Example:
A single dose of Yondelis can blow through the entire oncology budget of a local county hospital, or at a major place like the Mayo Clinic, it could swallow a third of the entire budget. So, if you want to ensure ONE person who has a legal right to Yondelis actually gets it, you effectively have to strip away hundreds of doses of other, cheaper medications that countless other people desperately need.
In my view, there is no other choice: instead of saving up for houses or cars, people should be forced to save for those one-in-a-million medical emergencies.

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dustyscout8 said:ruggedfox11, yeah, it’s obvious as day... it's just all about the money, money, money.😢 It’s honestly appalling—I don't even know what to say. This entire country is failing us. Everyone in power is to blame; the whole system is broken because we can't get our loved ones the treatment they need. Everything is backwards and completely irrational. It shouldn't be the case that once someone receives a diagnosis as devastating as cancer, all that follows is endless waiting—waiting for their pathetic boards, their meetings... just constant delays. You aren't entitled to a more effective medication because of their arbitrary rules. It's a nightmare. What does a human life even mean to them? Why isn't the system designed so that the moment someone falls ill, they receive therapy IMMEDIATELY?

For us, the hardest part was actually the wait for the diagnosis itself. Once we finally had that, the treatment started right away—I really can't complain about that part—but everything else... Between everything, he spent 20 days in the hospital, and 15 of those were just waiting for a diagnosis. That's where the frustration really boiled over. I ended up losing it at the doctor, asking how they could have no shame—did they go to medical school just to line their pockets? They could have finished the tests in five days tops, which, if you ask me, would have been incredibly fast.
And then, when the pulmonologist took over from hematology, she told me they were going to start chemo just to make his passing easier. Every time my wife sees him, she’s shocked by how well he looks compared to what she was bracing for.
It's just devastating.
I find myself blaming both the system and the individuals within it—because the way things are set up allows them to act like they're gods, forcing patients to treat them with that kind of subservience.
As for the private clinics... they've handled things completely wrong. If nothing else, they should provide ballpark pricing so people can actually plan accordingly, rather than saying, "Well, we have this specific machine with these exact specifications that performs this function." To me—and I suspect most people—that technical jargon means absolutely nothing. Just tell me, "We can perform this procedure for this price," like any other service industry.

I find myself coming back to this thread constantly. I start typing, then just stop. I can’t find the right words because my head is a complete mess. I don't even know what I'm trying to say or what I should be asking you people... I've been digging through the internet for days on end, and honestly, it's making me sick. I feel this pressure in my head, in my ears—just pure anger and rage. I find myself breaking down in tears all the time.

My mom has been fighting Non-Hodgkin Lymphoma for 13 years now. Her current diagnosis is NHL DLBCL, transformed from follicular.

She has these external nodes in her groin and abdomen that have become infected. She asked the doctor to clean them out today, and they told her they’d work until 1 p.m. to get it handled.

The NHL node is refractory since she’s already gone through two types of chemo that did absolutely nothing. Then she had Endoxan, which managed to stop the nodes from spreading further. Today's results show disease progression. They've bumped her Dexamethasone up to two 4mg tablets as chronic therapy, and she’s taking Sevredol for the intense pain. There’s a consultation next week to decide on a new line of therapy called "mono gem"—I have no clue what that abbreviation means; I can't find anything about it online.

The doctors aren't telling me anything else. I straight-up asked them if Mom is just receiving palliative chemo now, and they wouldn't even give me an answer. I have no idea what's actually happening and I'm losing my mind. I even asked if they've just given up on her. They claim their mission as doctors is to never give up.🙂

Based on what you guys have been through, does anyone know what we should be doing?
Is this really the end?

Otherwise, Mom is doing okay, aside from how much this has mentally crushed her. She’s still trying to live her life—walking, cooking for herself, going out for coffee with us, laughing. She doesn't look like someone who is at the end of her road to me.

I've read that when people reach the end, things get worse—they sleep all day, they lose their appetite. But Mom is eating. Yesterday, she was actually enjoying some ice cream.😁

She has no idea that I cry every single night. I have these nightmares where I see her dying in agony. The biggest issues are the pain in her leg and those wounds; every time she sees them, it just knocks her for six.

I've seen mentions here about Paw Paw ointment, and I've been thinking about ordering some for her.

Hey there. I’ve been lurking here and reading through all your posts for a while now. Honestly, I don't know if this will actually help anyone, but maybe try asking about the cost for Radiochirurgia at this private clinic? They pull in a massive amount of international patients, so you know they definitely offer it. I realize Skopje is a long haul from here, but who knows—the price difference might be huge enough to make the trip worth it.

gentlenomad43 said:I find myself coming back to this thread quite often—I’ll start typing, then just freeze because my head is such a mess. I honestly don't even know what to say or what to ask you all... I've been digging through the internet for days on end, searching until my eyes actually ache. It’s left me feeling this intense pressure in my head and ears, just pure anger and frustration... I often find myself breaking down in tears in the middle of the grocery store...

My mother has been fighting Non-Hodgkin Lymphoma for 13 years now. Her current diagnosis is NHL DLBCL, transformed from follicular

She has external nodes in her groin and abdomen that have become infected—today she asked the doctor to have them cleaned, and they told her they’d work on it until 1:00 PM, wherever she had been treated before.

The NHL node itself is refractory, since she’s already gone through two different types of chemo that didn't touch it; after that, she was given Endoxan, which managed to stop the nodes from spreading further. Today's results show disease progression, so they are increasing her Dexamethasone to two 4mg tablets as chronic therapy, and she's also taking Sevredol for the severe pain. There will be a consultation next week to decide on a new line of therapy—something called "mono gem"—I can't for the life of me find out what that abbreviation stands for online.

The doctors aren't giving me much more than that. I even asked if Mom is moving into palliative chemo, but they wouldn't give me a straight answer. I feel completely lost and, frankly, I'm losing my mind. I asked them point-blank if they've given up on her—they just said their mission as physicians is to never stop fighting.🙂

Based on your own experiences, does anyone know what we should be doing right now?
Is this really the end?

Aside from all this, Mom is doing okay, though the mental toll of it all has been heavy on her. She still tries to live her life—she walks, she cooks for herself, she joins us for coffee, she laughs—she doesn't look like someone who is at the very end of her journey to me.

I've read that when people are near the end, things tend to decline—they sleep more, they lose their appetite—but Mom is still eating well; yesterday, she was actually enjoying some ice cream.😁

She has no idea that I cry every single night, or that I have these nightmares where I see her suffering. The hardest part is the pain in her leg and those sores; every time she sees them, it just knocks the wind out of her.

I've seen people mention Paw Paw here, and I've been thinking about ordering some for her.

All I can say is that I am so incredibly sorry, and I'd suggest sticking with this forum too—cancer isn't the end of the world. :-)

ruggedfox11 said:All I can say is I'm sorry you're going through this. Honestly, check out the cancer forums—they aren't as bleak as you'd think. :-)

You really think this is where the fight ends? 😢

Thanks for the tip on the forum. I’ll definitely sign up and get my questions posted there.

gentlenomad43 said:Do you think this is the end of our fight? 😢

Thanks for the recommendation for the forum—I’ll definitely register there as well and post my question.

Neeeee, I don't think it's the end—God forbid. I don't know much about lymphoma myself—since we're dealing with a different type of cancer—so I can really only offer moral support. :-)

It’s a forum similar to this one; you’ll find way more experiences, stories, and fellow fighters. Personally, I learned quite a lot from being part of those communities, and everyone is genuinely willing to help. :-)

What I have gathered from being here is that you just have to live one day at a time—not look too far ahead or get caught up in the future. It’s hard enough at the beginning, and I imagine it gets even harder if things take a turn for the worse, but I am hoping—for my own sake and for all the other fighters out there—that things won't go down that path.

I honestly fall into that camp of people who have learned from this community that you just have to take things one day at a time. In my opinion, that’s easily the best piece of advice anyone has shared here. Second: please, for the love of everything, stop obsessing over the statistics. Every single person and every single cancer diagnosis is its own unique beast. You could have two people walking in with the exact same diagnosis and the exact same treatment plan, yet end up with completely different outcomes. I don't know enough about what my dad is facing specifically, and I certainly don't know anything about everyone else's situation, so I realize I can't be much help when it comes to medical specifics regarding lymphoma. All I can offer is moral support. And sometimes, that actually matters quite a bit. Personally, I know maybe two people who went through something similar, and unfortunately, things didn't turn out well, and they aren't exactly eager to talk about it. Then there are others, myself included, who simply don't have any experience to draw from, so we aren't quite sure what to say or how to act—which I totally get, because I've been right there in those shoes. That's why I'm so grateful to have this little sanctuary in the form of a forum...

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We went in yesterday for a follow-up CT scan—fingers crossed everything comes back looking okay in the middle.

I heard back from the Mayo Clinic regarding the procedure, and they mentioned his intervention is $14000
Honestly, it’s not quite as extensive as I had anticipated it would be.

Angela Wright, that link actually works, though I’m still struggling to grasp its actual purpose. Is it meant to show the volume of existing studies for a specific disease? I had to input pancreatic adenocarcinoma, but I can't quite make sense of why it’s throwing these specific results for that diagnosis; perhaps my English just isn't quite sharp enough to interpret the data... And regarding what you mentioned about trying to secure access to some kind of advanced medication—where exactly are we supposed to be looking for that? I honestly don't follow at all.😢
I completely agree with your sentiment that instead of pouring money into houses, apartments, or cars, we really ought to be setting aside funds from our very first day on the job just to ensure we have something to fall back on when illness strikes. Because once you actually get sick, the reality of the situation becomes painfully clear...😢

ruggedfox11, I’m keeping my fingers crossed for you this Wednesday!

uh $14000...what can I even say? There is just too much to process. If only the system actually worked the way it should, we could just reach back into those massive piles of money we’ve been pouring into our Medicare premiums and actually use them when it matters.

Drew Brooks8 said:Hi everyone. I’ve been following these discussions for quite some time now, and while I'm not entirely certain if this will be useful to you, I would suggest inquiring about the cost of Radiochirurgia at this private facility. They handle a massive volume of international patients, so they clearly offer the service; I realize Skopje is a significant distance from you, but the price difference might actually justify the trip.

I appreciate the link regardless, Drew Brooks8.

dustyscout8 said:ruggedfox11, I am keeping everything crossed for you this Wednesday!!!

Ugh $14000...what can I even say? There is just too much to process. Honestly—if only we could actually reach back into those massive piles of money we’ve been paying into our health insurance premiums every single month. If only the system worked that way...

The real question is whether we’d find anything left inside after they've spent every last cent :-)

We still have one backup plan left, though—laser removal.

It’s going to turn out okay, I know it—I can just feel it.

ruggedfox11 said:The real question is whether there was anything actually left inside after all that money was blown on it. :-)

We still have a backup plan involving laser removal

It’s going to work out well; I can feel it.

Exactly, well said!
Let the backup plans roll; we move forward regardless!
And you framed the question perfectly—whether there would even be anything left inside by February!

I spend my entire evening Googling, digging through data... just like everyone else on this forum. It's frustrating when you want to help but don't have the answers.
Does anyone here who has fought lymphoma know what actually worked during those intense pain flares? Are there cases where the patches were useless? Or even the pills? What are the next steps when those fail? I honestly assumed the patch was supposed to keep the pain under control.😢

I’m trying to figure out the exact dosage on my dad's patch—how many micrograms are we talking about here? Initially, it didn't seem to do much for him, but strangely enough, with every round of chemo, his pain levels have been steadily dropping. Currently, he's using a 75 mcg patch combined with a tablet that lasts about 12 hours. At first, he was popping Sevredol like they were candy, but for over a month now, he hasn't needed a single one. It’s quite the turnaround, considering that for months leading up to the diagnosis, he was cycling through various combinations of painkillers and absolutely nothing worked. They eventually bumped up the strength of the patch until they hit that "sweet spot" dose that actually provides relief. Through a friend, my dad managed to get in touch with an anesthesiologist who has been coming to the house to manage his pain therapy, though I can't recall the doctor's name offhand—I'll have to look into that.

I have what might sound like a foolish question, but I’ve been left feeling incredibly unsettled today... is it actually possible for doctors to fudge the results just to avoid upsetting a patient or their family? Is that even legal? My dad mentioned to me that they wrote on a follow-up CT scan that the disease was stabilized, even though it's actually progressing, simply because they didn't want to distress him or us. Honestly, that really bothered me. Does this mean there is a genuine chance I won't even know the true state of my father's health? I can probably wrap my head around looking at an X-ray, but an abdominal ultrasound report (where they noted the targets were in regression) is just a bunch of blurry spots on paper to me. As for CT scans, I haven't the slightest clue what those even look like, let alone how to interpret them.

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Robin Diaz4 said:My dad is using a patch—I think it’s 75 micrograms?—and while it didn't help much at first, he's actually feeling less pain with every chemo session. He uses the patch plus a pill that lasts about 12 hours. In the beginning, he was popping Sevredol like they were candy, but for over a month now, he hasn't needed a single one. It's worth noting that for months before his diagnosis, he tried all sorts of different pain medication combinations and nothing seemed to touch it. They just kept increasing the dosage of the patch until they hit a level that actually worked. Through a friend, my dad actually got connected with an anesthesiologist who would come to the house to manage his pain therapy—I can't recall the doctor's name right now, though, but I can look into it.

I have another silly question because I was really shaken up today... is it actually possible for doctors to falsify results just to avoid upsetting the patient or the family? Is that even legal? My dad's union rep told me that they knew they should write on the follow-up CT scan that the disease was stabilized, even though it's actually progressing, just so the patient and the family wouldn't get distressed. Honestly, that really upset me. Does this mean there's a chance I won't even know what kind of state my father is truly in? I can probably make sense of an X-ray if I try, but the abdominal ultrasound results (where they wrote that the targets are in regression) are just blurry spots on paper to me until I can look at them more closely tomorrow. As for the CT scans... I have no idea what those even look like, let alone how to interpret them.

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Don't worry—families don't typically read the raw medical reports themselves; instead, those findings are passed along to specialists. If they were to "cover things up" by writing incorrect statuses on the reports, the attending physician might prescribe the wrong treatment, which opens them up to massive malpractice lawsuits.
That said, you can always seek a second opinion if you genuinely feel they aren't being honest about the results.