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

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.

I’m on the same page as ruggedfox11 here—they’re asking for head scans to be sure everything is okay. My dad is scheduled for a General Electric scan after his next cycle. Now, here’s my question: when he goes in for the scan, is the head imaging done automatically at the same time, or do we need to specifically request that? I apologize if this sounds like a rookie question, I just want to make sure we aren't missing anything. 😢

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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.

Robin Diaz4 said:I’m with ruggedfox11 on this one—they really should request a head scan just to be safe... My dad is scheduled for a General Electric scan after his next cycle. Now, here is the question: when he goes in for the scan, does the head imaging happen automatically, or do you have to specifically ask for it? Forgive me if this sounds like a rookie question, but I am honestly just lost here. 😢

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Unless I have you confused with someone else, you’re at Beverly Hills just like my mother is. When she gets sent for her General Electric scans, they are highly targeted. Usually, it’s just a once-a-year thing where they do a head scan and an abdominal scan.

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?

A close friend of mine—whose father actually went through the exact same cancer battle—told me her doctors gave her some very specific advice regarding detox supplements. Apparently, they recommended waiting until the entire chemotherapy regimen was completely finished before starting any of those "toxin-flushing" protocols. They weren't suggesting anything during the treatment itself, nor even in the gaps between cycles; they wanted her to wait until everything was done. In the meantime, the focus was strictly on boosting the immune system. Honestly, there’s a certain logic to it; you wouldn't want to flush things out of your system prematurely while the primary treatment is still working its magic. I haven't dove too deep into the research on this yet, mostly because my dad still has one to three cycles left, depending on what his lab results look like after this fourth round. For what it's worth, she ended up using zeolite and some kind of algae, maybe spirulina?

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Rachel Williams said:If I haven't mistaken you for someone else, you're dealing with the same situation at Beverly Hills that my mother is. When they send her for a General Electric scan, it’s usually very targeted—typically just an annual head and abdomen scan.

I suppose if I were feeling particularly spiteful, I should have demanded they scan his head too.
That said, I truly believe this confusion is just a direct side effect of the chemo. He seemed much more himself this afternoon; he was still a little foggy this morning, but yesterday he genuinely acted like he was intoxicated—I wouldn't go so far as to say drunk, but close.

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Robin Diaz4 said:I'd be furious if I hadn't asked them to scan his head too.
Though, I suspect his confusion is just a side effect of the chemo—he seemed much more himself this afternoon, even if he was a bit foggy this morning. Yesterday, though? Honestly, he acted as if he were intoxicated—maybe even drunk.

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Just keep in mind that if the referral doesn't explicitly call for a General Electric head CT, and the patient hasn't been cleared for one, the staff simply can't perform that extra scan.
No one is allowed to run a test that hasn't been specifically ordered—that is, requested by the attending physician overseeing the patient's care.

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.

I’ve never been one to let the wind blow me off course, if you know what I mean...

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It honestly baffles me how little people actually engage on these international forums. You’d think with their massive population, they’d be all over this, but apparently not. It’s just a total wasteland of activity
and frankly, it’s a shame because they have to pay top dollar for this kind of info while we basically get it for free...
Speaking of costs, does anyone here have any firsthand experience with that new specialized facility (the one doing Radiochirurgia?) over in St. Louis? I know their treatment fees are absolutely astronomical right now, but is the actual outcome worth the hit to the bank account? I couldn't even get an appointment for a consultation because they wouldn't see me while my dad was still admitted at another hospital (which seems to be the standard runaround you get from most places, like Mount Sinai Hospital), and they were incredibly tight-lipped about details. So, I'm left completely in the dark regarding just how much this "premium" service actually costs...

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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.

Exactly. They won't even grant you a consultation because they insist on performing their own diagnostics from scratch based solely on their own findings. Look, I get the logic—I don't go around using raw data from other people's work in my own profession either—but I truly fail to see why they can't at least provide diagnostic services if the patient is already undergoing treatment elsewhere.

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So, I headed over there to get my abdominal ultrasound done—honestly, I specifically picked that clinic because their imaging tech is top-tier, which my oncologist actually vouched for once he saw where I went for scans. They didn't even blink or ask a bunch of annoying questions before getting me in...

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. 😃😃

ruggedfox11 said:Robin Diaz4, someone mentioned that a single chemo dose—not even a full course, just one shot—can run you $25,000!! If you don't have top-tier health insurance, you're basically screwed.

Man, I can't find any solid data online regarding what they actually charge. They’ve only become transparent since the new regulations kicked in, right around the time her husband got his diagnosis. I did stumble upon an article recently suggesting similar treatments cost about $10,000 abroad.
Wait, can't you just go there for a consultation if you're registered with a different provider?
They are incredibly stingy when it comes to sharing information.
From what I gather, Dr. Nikolic works for them, but he also practices at Mount Sinai Hospital. We were actually thinking about sending him the test results to get a second opinion on the status and whether radiochirurgia is an option after the chemo is done. Try to track down a doctor who can get you in with him.

Oh, right. Prices are just as insane here, especially for biologics. A single dose of something like Yondelis is astronomical. Our healthcare system drains everything we have; you don't truly realize how much it costs until you're backed into a corner.
The only real advantage they have over us is having those specialized centers of excellence and easier access to clinical trials.

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ruggedfox11 said:I don't care about any of that. The diagnosis is already on the table. They could at least take the existing scans into account, or maybe order a few new ones of their own. A little flexibility and more actual information would go a long way.
When I sent his records over to specialists in Italy and Germany, I actually got a response—an opinion, at least. It wasn't official, but it was an opinion.
That’s exactly why we’re going through Nikolic.. Dammit, you can't just go around soliciting private opinions without a reason or via some third-party route 😃😃

It’s all about the repercussions. Everyone in the medical community knows everyone else, so when you walk into your doctor's office during treatment and drop a completely conflicting second opinion on them, you're basically applying pressure... if you ask me, that's the heart of the matter.

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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.

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’s really about repercussions. For the most part, everyone in the field is aware of what’s going on, so when you show up to your doctor during treatment with some conflicting opinion you picked up elsewhere and start applying pressure... I think that’s essentially where the friction comes from.

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Exactly. A friend of mine in the medical field explained it by comparing doctors to colleagues in any other profession. If one specialist has already established a diagnosis, they aren't keen on having others meddling while you're actively under their care. It’s quite similar to my own industry—everyone knows what everyone else is doing, and there's this unspoken rule that you don't go poaching clients from your peers unless the original provider actually agrees to the handoff.
I assume medicine operates under those same unwritten rules.

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