Posts by ruggedfox11

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. :-)

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.

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.

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.

dustyscout8 said:I understand... You really have 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 completed their full assessment? It’s quite strange that they haven't replied to the email—honestly, it feels a bit unprofessional on their part. Perhaps it might be worth giving them a call if you still don't hear back?
I'm keeping my fingers crossed for you... Is your husband experiencing any pain right now? And if you don't mind me asking, how long has it been since the initial diagnosis?

They only responded via email with the exact information I copied earlier today—even though I had already replied to reiterate my questions, they just haven't given me anything else.

It feels a bit silly and unprofessional to me—I mean, surely they can provide a rough estimate? But hopefully, they will get back to me eventually. In the worst-case scenario, I'll just pick up the phone and call them.

Of course you should ask! :-)
He’s doing wonderful right now. It’s been just over three months since the diagnosis, and just under four months since he finished his hospital stay and those four rounds of chemo. He isn't in any pain—actually, he wasn't even experiencing "pain" per se, more like this intense choking sensation that made it impossible for him to eat; the tumor was pressing against both his bronchi and his esophagus.

He's definitely regressing—in a good way, I mean. He actually had a CT scan today, so we'll just have to wait a little while to see exactly how much things have receded.

dustyscout8 said:I sent over the test results the day before yesterday—just got a confirmation today for a consultation appointment in about three weeks... ruggedfox11, does that mean you guys usually hear back within a few days if you’ve messaged them about pricing?

Oh my God... the price. Their response regarding the cost was just... "Mayo Clinic. Hello XXXX, the cost for pancreatic tumor radiochirurgia is $29075. Best regards."

I didn't actually send an inquiry about booking yet. Since they hadn't replied to the email I sent two months ago, I decided to message them on Facebook today with the medical reports attached—just asking for a rough estimate of what removal would cost. Honestly, I'm just looking for information at this stage; my doctor expects the situation to progress quite a bit. His main concern is that the tumor is located on the bronchi rather than the lungs themselves, and he's worried nobody will want to touch it. So, I really need a Plan B with them—and I need to know roughly how much money we're going to need to set aside.

dustyscout8 said:I really appreciate that—and honestly, I couldn't agree more. Everything has become incredibly expensive lately, hasn't it? It feels like every time you turn around, the cost of living just keeps climbing. 😢We'll just have to wait and see... If I manage to dig up any more information, I'll be sure to post an update here. I'm quite certain there are more cases out there—it feels like we're seeing them more frequently every single day. It really does feel like an epidemic is unfolding right before our eyes. 😢

I sent them a message.
I'm just sitting here waiting to hear back—once I get an answer, I'll be sure to post an update.

dustyscout8 said:Thanks anyway—honestly, any bit of information helps at times like this.

So, I found this comment from them on Facebook regarding surgery for gastric cancer:

Mayo Clinic: Respectfully, Nicholas, the costs for radiosurgery procedures start at $18667 and can go much higher, as everything really depends on the specific details of the patient's case. We are hopeful that we will soon reach an agreement with Medicare to make this technology accessible to a much larger number of patients. Best regards.

dustyscout8 said:Thanks for getting back to me... Well, we had read that they utilize some incredibly advanced chemotherapy methods—something cutting-edge and highly targeted specifically at the affected area. And honestly, if they gave us the green light, we would head up there immediately...
But I suppose all that means little if the illness isn't under control first. In our case, we're dealing with a recurrence of pancreatic cancer two years after the initial surgery. There aren't any metastases yet...
As soon as I hear anything new, I'll be sure to share it with everyone here...
Thank you so much.

I just stumbled upon this:
https://www.facebook.com/radiochirurgia.chicago/

Maybe they'll respond; I'm going to send them a message a bit later, and I'll let you know if I learn anything else.

And this was the response I received when I emailed them their medical records:

We appreciate your interest in our clinic.
We recommend scheduling a consultation; please bring all necessary documentation and have your spouse accompany you to meet with our oncologist.

An appointment can be arranged as early as today.
Contact phone: 01/4008050.

Sincerely,
Cleveland Clinic

Angela Wright said:A while back, through my work with a local non-profit, I attended an oncology medical conference down in Key West. There was this one presentation by a neurosurgeon—really striking stuff—where he was criticizing the approach of invasive cranial radiation. His main concern was the risk of creating brain lesions as a side effect of the radiation itself. He argued that it’s becoming increasingly difficult to distinguish between actual tumor progression and damage caused by the treatment, which makes it nearly impossible to accurately assess the patient's true condition and decide on the next steps for treatment. The brain is such incredibly delicate tissue, and once you damage it, that damage is permanent. It really raises the question of which treatment centers are essentially playing Russian roulette—and more importantly, how much quality of life a patient actually gains versus what they lose because of such an aggressive approach.
In my estimation, the medical community isn't even in total agreement on these matters yet. On top of that, patients are rarely given a clear explanation of these risks, which leaves them unable to weigh the pros and cons and make an informed decision about whether they even want to proceed.

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https://www.oncolink.org/frequently-...ctic-radiation

I spent some time digging around yesterday and stumbled upon this link.

I am definitely going to bring this up with his oncologist, as well as his pulmonologist and the neurosurgeon.

The thing is, my husband doesn't have any specific brain metastases; rather, they are suggesting whole-brain radiation to try and prevent him from "going to meet the Big Man upstairs." But I've been reading these American forums for a few days now, seeing people talk about the effects of preventative radiation—and honestly, it's unsettling. I see stories after stories from people whose loved ones passed away shortly after receiving preventative cranial radiation or combined chest radiation (if there's even a connection there). As much as I wanted to be ready to fight for every possible treatment option, including head radiation, I'm feeling quite uncertain now. I know how forums can be—everyone's biology is unique—but these stories have really planted a seed of doubt in my mind.

dustyscout8 said:Hi everyone! Has anyone here actually been to that new Mayo Clinic?"
What’s the experience like there? Do they just offer chemotherapy, or do they provide other types of therapy as well? And are they outrageously expensive? If anyone knows anything more about this, please let me know—it's quite urgent. We're currently waiting for a call after sending over our test results... we have no idea how long the wait will be.

We haven't been there ourselves, but we do know they don't administer chemotherapy. As for the cost, I can only speculate—an operation like that out here might run you around $10,000. One thing we learned is that they won't even look at your test results without an in-person consultation first; and secondly—as I mentioned earlier—they won't even see or touch a patient if the illness isn't properly stabilized (that was something my husband's pulmonologist told us).
If you happen to come across any newer information, please feel free to share it. :-)

Angela Wright, you mentioned earlier that we should really weigh whether preventative whole-head radiation is actually a sound idea.
Why would we even consider that?
What kind of side effects does non-targeted head radiation actually carry?
And more importantly, what are the potential long-term consequences of going down that road?

Angela Wright said:It really comes down to repercussions. Most people are somewhat informed nowadays, so you eventually walk into your doctor's office with a second or third opinion—something completely different from what they told you—and then you start pushing back... I think that’s essentially the heart of the matter.

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From what I understand, you always have the right to seek a second, third, or even fifth opinion during treatment; once you have all the facts, you can decide whether to stick with the current plan or pivot to a different approach.

Regarding the Radiochirurgia, my husband's oncologist gave me some very blunt advice—they won't even look at a "referral" patient, let alone perform a procedure, if the disease isn't stabilized or if there's any sign of spreading or growth. On the flip side, if the condition has fully receded, they say there's no point in seeing them at all.

That was just the informational part of it... honestly, they didn't provide much detail, which seems a bit off considering how much they charge.

I don't really care about all that technicality—the diagnosis is already on the table. They could at least take the existing scans into account, or maybe even order some new ones themselves... It would be nice if they could show a little more flexibility and actually provide some useful information.
When I sent his medical records over to specialists in Italy and Germany, I actually received feedback—an unofficial opinion, but an opinion nonetheless.
That’s exactly why we’re going through Nikolic. Honestly, you can't just go around bidding for private consultations or trying to find a workaround without any real direction. 😃😃

Robin Diaz4, I read somewhere that a single round of chemo—not even a full course, just one dose—can run you upwards of $25,000!! If you don't have top-tier health insurance, you're basically

Man, I honestly can't find any solid data on what they actually charge... They only opened up recently, right around the time my husband was getting his diagnosis. I did stumble upon an article lately suggesting that similar treatment abroad costs roughly $10,000.
Wait, are you saying you can't even go to them for a consultation if you're registered with a different provider?
They are being incredibly stingy with the information they put out there.
From what I gather, Dr. Nikolic works with them, though he also practices at Mount Sinai Hospital. We were actually planning on sending our records over to him to get a second opinion on the status and potential Radiochirurgia once the chemo is finished. You might want to try reaching out to him directly.

Robin Diaz4 said:A close friend of mine—whose father was also battling cancer—mentioned that her doctors advised her to hold off on all those detox supplements until the chemotherapy was completely finished. They specifically told her not to use them during the treatment itself or even in the gaps between cycles, but rather once everything was wrapped up. In the meantime, she focused solely on boosting his immune system. It actually makes a fair amount of sense to me—you wouldn't want to flush things out of the system too early when the body is working so hard. I haven't had much time to dive deep into the research yet, since my dad still has one to three cycles left, depending on how his results look after the fourth round. She ended up using zeolite and some sort of algae, maybe spirulina?

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To be honest, I haven't spent a ton of time researching charcoal—it's been a bit of a whirlwind lately, if you can believe it—but personally, I've found it quite helpful for those kinds of issues. I truly feel like it acts as a real cleanser for the system.

Does anyone happen to have some insight on this... Activated charcoal? I was wondering if it might be helpful to help flush out any remnants of chemo from the system—perhaps using it during the intervals between treatments?
Is there any kind of contraindication when it comes to chemotherapy?

Robin Diaz4 said:I completely agree with ruggedfox11—it’s definitely worth asking them to scan the head just to be safe and get a full picture. My dad is actually scheduled for a CT scan at General Electric once he finishes his next cycle, so I've been doing a lot of reading on this myself. Now, here is my question for those who might know: when he goes in for the CT, does the head scan happen automatically as part of the procedure, or is that something you specifically have to request or mention beforehand? I'm sorry if this sounds like a silly question—I'm still trying to wrap my head around all these protocols—but I just want to make sure we aren't missing anything important. 😢

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I felt like I really had to bring up the head issues immediately after we got the diagnosis—it just didn't feel right to wait.

We have a scheduled CT scan coming up next week—though they’re only focusing on my abdomen and chest for now. Regarding my head, she was pretty clear that radiation therapy is definitely going to be necessary, but I haven't actually pressed her for more specifics just yet. I figured I’d wait until I’m back in her office to drop off those follow-up blood work results. Once I have a better sense of where we stand, I'll be sure to post an update here so everyone stays in the loop.
Look, if they haven't recorded anything for him up to this point, I’d say just go ahead and ask—actually, be direct about it. Mention it, request it, make it clear what you want; personally, if I were in that position, I certainly wouldn't hesitate to speak up.

Carol Reed19 said:Thank you—that’s actually a little bit encouraging to hear. She’s been going through weekly chemo sessions for over two months now, and this is really the first time we’ve dealt with something like this.
We’ll just have to wait and see how things unfold. I can't help but worry if it might have spread to the brain, though I assume the scans would catch that if it were the case, right?

My husband went through something similar—he had these tremors, almost like he was stumbling around drunk for a few days following his chemo treatments.

But nothing quite like this.
If I were in your shoes, I’d ask them to run a scan on her head, just to be absolutely certain about everything.

Grace Ross20 said:We received a one-time payment—you just have to reach out to the Department of Veterans Affairs and submit all the necessary paperwork. It really depends on your income level and how many people are in your household.

Does anyone happen to know what the experience is like at the long-term care facility in Boise?
My dad picked up a bacterial infection that’s proving to be pretty resistant to antibiotics—so stubborn, actually—and the pulmonologist insisted he stay there until it's completely cleared up before they'll let him come home. We're worried about catching it ourselves, too.
I’ve heard some pretty grim rumors that the facility is basically where you go when things are terminal... they told us he’d likely stay for a maximum of a month before being discharged. Honestly, I don't even know how to process that.

Anyway, I've been reading through your posts every single day, though I haven't had much to contribute lately—things are still pretty much status quo with Dad. They did manage to clear the pulmonary embolism, though, so thankfully there aren't any more blood clots.

Thanks, I managed to get a hold of them, and they gave me the list of documents I need to gather.