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

Angela Wright said:I’m not sure about the specific terminology, but what was expelled could very well be a fragment of the tumor itself. It has that spongy texture, which would certainly align with lung tissue. If only you had some formalin on hand to preserve it so a specialist could take a look.
I'm keeping my fingers crossed for the pathology report.

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Unfortunately, I don't have any formalin on hand :-(

Maybe I could just put it in the freezer or the fridge—I'm really not sure if that would actually do anything.

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ruggedfox11 said:Unfortunately, I don't have any formalin on hand :-(

She could try putting it in the freezer or the fridge, though I'm not sure if that'll actually do anything.

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Try putting it in a sterile specimen cup, then pop that in a baggie and stick it in the fridge. It sounds pretty grim, I know, but if that mass they saw was real, maybe it just broke apart and passed. Based on the dimensions in the report, the size seems to match up.
You guys should also get a chest X-ray so you can compare the results.

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Hi everyone. I haven't posted here before, but I've been lurking. Unfortunately, cancer has hit my family too.

I just saw on the news that a young man from a small town in Florida dealing with stomach cancer is begging for anyone to send him any leftover Nexavar (Sorafenib) from Bayer if they don't need it anymore, because he simply can't afford to buy it.

I hope you don't mind me sharing the link to the story here; I'd like to help out in whatever way I can:

Betty Lopez3 said:Hello everyone. I haven't really posted here until now, but I've been reading all your updates. It's because, unfortunately, cancer hasn't spared my own family either.

I just saw a news report about a young man from a small town in Florida dealing with stomach cancer. He’s actually reaching out, asking if anyone happens to have any leftover Nexavar (Sorafenib) from Bayer that they no longer need and could send his way, simply because he can't afford to buy it himself.

I hope you don't mind me sharing the link to the story here; I'd like to help in whatever small way I can:

He even posted himself that all the funds have already been collected, and he's asking people to stop sending money now. 😉

So, the pulmonologist confirmed it really is cancerous tissue—though it’s necrotic now—likely originating from the right bronchus since that was completely obstructed from the start.
Clinically speaking, everything is holding steady because all three [medications] are being coordinated by the insurance provider, so we’re just waiting on the board's approval for the Hycamtin today or tomorrow.

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We finally received the biopsy results today regarding Mom’s lumps on her back and head. We had already braced ourselves for the news that they were lung metastases, but instead, they’re breast cancer metastases... where does this even end? Her breast cancer markers have been elevated since last year, yet both her physical exams and ultrasounds came back perfectly fine. Now we’re just sitting here waiting for the pulmonologist from the Mayo Clinic to get back to us so she can figure out the next steps, all while we wait on the chest and abdominal CT scans to drop—not that those will do anything besides crush our spirits even further.

Rachel Williams said:He actually went out and announced it himself—that all the money has been pocketed—and he’s begging people to stop donating. 😉

The whole thing turned into a bizarre mess in the end. From what I can gather, the guy got a verbal recommendation for a medication, and his doctor told him they’d write up a formal prescription once they returned from vacation. As far as I can tell, he decided to take matters into his own hands and started self-administering Nexavar. Seriously, Jesus, do you have any idea what you're doing? 😨 He's basically cornered himself by making this public appeal, and it’s completely unclear how he knows his exact dosage without medical supervision, or if the stuff he received through donations was even stored correctly or follows the right protocol for his specific needs. He’s playing Russian roulette with a very high probability of getting shot. Besides, handing off leftover chemotherapy drugs meant for one patient to someone else is illegal, just like dispensing medication without a prescription.
If his doctor actually writes that prescription, he’d automatically be eligible for reimbursement from the hospital budget, since that’s how drugs not covered by Medicare get funded.
In my humble opinion, you did him a massive disservice.
And I don't understand why he isn't on Sutent, which is on the Medicare list for GIST and is just as smart an option with great efficacy.
The healthcare system, especially regarding oncology, is completely broken, and that's been the case for decades. It drives people to do desperate things.
Poor souls. 😔

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ruggedfox11 said:So, the pulmonologist is saying it really is cancer tissue, but it's necrotic—dead tissue—most likely from the right bronchus since that was completely blocked at the start.
Clinically speaking, there's nothing to worry about because all three are being coordinated, so we’re just waiting on the board's approval for Hycamtin today or tomorrow.

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In that case, shouldn't that be considered good news? If those masses are dead, they aren't an issue anymore. Maybe that previous finding wasn't actually progression after all?

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Rachel Williams said:We just got the biopsy results back for Mom's lumps on her back and head. We had already braced ourselves for them to be lung metastases, but they aren't—they’re actually breast cancer metastases... where does this end? Even since last year, her breast cancer markers have been elevated, even though both Mom and her ultrasounds seemed totally fine... now we're just stuck waiting for the pulmonologist from the Mayo Clinic to get back to us so she can figure out the next steps, all while we wait on the chest and abdominal CT scans to come in and just completely crush our spirits...

Good grief... life really knows how to throw a curveball when you least expect it. I really hope they can manage to get things under control.

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Angela Wright said:So, if that's the case, it should actually be good news since those masses wouldn't be there anymore. Maybe that scan wasn't showing progression after all?

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Well... I didn't ask her if it meant the exact same thing for the CT scan results—it's enough to know there's growth near the bronchus, so it's better if she responds immediately and starts the chemo.

Oh goodness, Rachel Williams, I honestly don't know what to say.

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Angela Wright said:Good grief... things really are spiraling out of control. I just hope they can actually manage to get this situation under wraps.

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Yeah... it’s always like this with my poor mother. Doctors tend to just breeze past everything until things hit the fan, if you'll excuse the expression. Twenty years ago, when she first faced breast cancer, her primary care physician spent over six months just prescribing various ointments to rub on the lump. When Mom finally took matters into her own hands and went to a specialized oncology clinic, that doctor first lost her mind because Mom was "disobeying" her instructions—and then, once the diagnosis actually landed, she was completely blindsided. Eventually, Mom switched to her current doctor, who is honestly one of the most wonderful physicians one could ever hope to find.

As a result of everything—the surgery to remove a breast and some lymph nodes, followed by chemo and radiation alongside regular checkups—she also had to go in for frequent lung ultrasounds (over at the pulmonary clinic near downtown). For THREE (!!!) years, they kept trying to convince her that she just had scarring from TB, even though no one in her family could remember her ever having a cough or anything similar. Aside from a little jaundice back in elementary school, she was an incredibly healthy kid. Then, when lumps started appearing on her neck near the ribs, they sent her from pillar to post, bouncing between diagnoses ranging from inflamed lymph nodes to mere fatty deposits. She wasted another year wandering through the system before we finally made it to Jordanovac and got a real diagnosis of lung cancer (which, naturally, had already metastasized significantly by then). Regarding that facility, I have nothing but praise for them over these last three years while Mom has been receiving treatment there, but in reality, it feels like they are just using trial and error with her. It seems they simply aren't used to seeing patients with such advanced diagnoses. And now, after those lumps flared up again over the last six months, they sent her to the dermatology clinic for a biopsy, and today we received these results... People everywhere seem baffled as to why she isn't receiving any major therapy beyond Ibuprofen for pain, Megestrol for appetite, and Euthyrox for her thyroid. Despite all my efforts to stay informed, I truly don't even know what they could theoretically offer her anymore...

Ugh... I've gone on quite a tangent... I suppose I need to vent every once in a while too...

I just wanted to reach out and send my love to everyone still fighting this damn thing. I pop in to read your posts from time to time, but I have to be honest—it’s getting pretty hard for me. Every single time I do, I end up in tears. It’ll be nearly two months since we lost Dad, yet I still find myself rushing into his room first thing in the morning, half-expecting him to need something. And whenever an article about cancer pops up, I find myself clicking on it immediately, clinging to the hope that maybe, just maybe, it might help him... Anyway, even if I'm quiet, please know I'm thinking of you all and wishing you nothing but strength.

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The female pulmonologist is actually going to refer me back to my hometown physician :-) I tried to advocate for him regarding the cortisone—he really needs to be tapering by 5mg increments, not 10mg, and he should stay at 30mg for the time being. To make matters worse, he woke up this morning with swollen joints in his legs (exactly how it was when he first came home from the hospital). The review board still hasn't given the green light, and since it’s the end of the month, they claim they’ve already hit their monthly medication quota!! DAMN THESE QUOTAS!!! It is enough to drive you absolutely insane!!! He won't get approval until August 1st (hopefully)!! I even called the director, and he had the audacity to tell me that HIS illness isn't serious enough and that he just HAS to wait!!! I mean, what kind of system are we living in? Is this really what we fight for? To be told that he shouldn't "use up" the quota? That he can just wait? That his condition isn't critical enough?! I am just so bitter... Even when you're battling an illness, you're still restricted by these damn quotas. It's a total disaster!!

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Angela Wright said:This whole thing turned out to be such a strange saga in the end. From what I can gather, the guy got a verbal recommendation for a medication, and his doctor told him they’d write a prescription once he returned from vacation. As I understand it, he just took the initiative to start treating himself with Nexavar—which, honestly, Jesus, do you realize what you're doing? 🤦‍♀️ He went and wrote a public appeal, and it’s totally unclear how he knows his exact dosage without medical supervision, or if the stuff he received via donation was even stored correctly or follows the right protocol for him. He’s playing Russian roulette with a very high chance of getting shot. Besides, giving away chemotherapy drugs left over from someone else's treatment is illegal, just like dispensing meds without a prescription.
If his doctor writes him a standard prescription, he’d automatically be eligible for reimbursement from the hospital budget since that's how drugs not covered by Medicare get funded.
In my humble opinion, you did him a disservice.
And I don't get why he isn't on Sutent, which is on the Medicare list for GIST and is just as smart and effective.
The healthcare system, especially oncology, is completely broken, and it's been like this for decades. It makes people do desperate things.
Poor souls... 😞

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What you're saying isn't true. I know a bit more detail about the whole story because it was all covered in the news. The man was sending samples at his own expense to a reference center in Austria, where they identified a subtype of stomach cancer so rare they told him he had a better chance of hitting a triple jackpot than catching that specific type. He tried Sutent, but he had allergic reactions. The doctor he switched to at the Mayo Clinic recommended specifically the drug he’s raising money for, and the doctor himself is actually the one launching the campaign to collect leftover meds. Anyway, he raised enough to cover three months of this experimental therapy to see if it works—it's his only shot. So, you've got the facts all wrong.
Yes, he did submit requests to hospitals and Medicare, but they obviously denied the funding.

Ashley Robinson3 said:What you're saying isn't true. I know the details of this story because it was picked up by the news. This guy was actually shipping his own samples over to a reference center in Austria, where they identified a subtype of stomach cancer so incredibly rare that they told him he had a better shot at hitting a triple jackpot than catching that specific diagnosis. He tried Sutent, but it just triggered allergic reactions. Once he moved his care to the Mayo Clinic, his doctor recommended the exact medication he’s been fundraising for—and the doctor himself is actually spearheading the drive to see if anyone has leftover supply. Long story short, he's raised enough to cover three months of this experimental therapy to see if it actually works. It's his one shot. So, you've got the whole situation completely wrong.
Yeah, he sent requests to the hospitals and Medicare too, but of course, they denied funding.

I didn't realize about the Sutent issue, but there's a massive difference between an oral recommendation and having a formal prescription in black and white.
The reality is, he couldn't get a dime from Medicare because he needs an OFFICIAL recommendation from a physician within the Medicare network. Medicare doesn't have a direct say in this; if his doctor had suggested what he claims, the request would have gone through a hospital board to approve funds from the hospital budget for Nexavar treatment. That's how it works for any drug that isn't on the standard Medicare formulary but is FDA-approved for the indication here in the States (that's been the protocol since the old administration and Milinovisev's era, and nothing has changed). Sure, they might still deny him, but if that happened, he'd have every right to take his case to the media. Instead, he's treating himself with something that isn't legally permitted in a hospital setting and isn't a safe way to manage an illness.
Given my experience working with patient advocacy groups for cancer survivors and having dealt with similar situations, I know exactly how these wheels turn.
The road to hell is paved with good intentions.

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I honestly had a total meltdown today—I ended up causing quite a scene over at the Department of Health because of these ridiculous waiting lists and those absurd "monthly quotas." Hopefully, they actually take some action after my outburst...

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ruggedfox11 said:I had a total meltdown today and started a massive uproar at the Department of Health over these retarded waiting lists and "monthly quotas." Hopefully, they'll actually do something about it...

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Unfortunately, they won't. It’s like tilting at windmills—a fight that nearly cost me my first child. You can't fix this with a single outburst; the entire system needs a complete overhaul from the ground up. What we actually need are honest, sane, and articulate people in every level of government, from the federal agencies down to local administration. Being a relatively small nation, we're far too vulnerable to the petty interests of a few big shots, and those people can make life absolutely miserable for everyone else.

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Angela Wright said:He simply wouldn't have been able to get any assistance from Medicare without an official recommendation from a doctor within the Medicare system. It isn't really a matter of Medicare itself having a direct say; if his physician had actually proposed what he claims, they could have submitted a request to the hospital board to approve funds from the hospital budget for Nexavar treatment. That’s how it works for all medications that aren't on the standard Medicare list for a specific condition but are registered here in the US for that indication (that was the protocol established back under the Sanader administration and continued through Milinovisev's term as minister, and it hasn't changed since). It is entirely possible they might have denied him, but if that happened, he would have had every right to take his case to the public. Instead, he's treating himself with something that can't be administered legally in a hospital setting, let alone safely. Given my experience working with cancer patient advocacy groups and having seen similar situations firsthand, I feel I have a pretty clear understanding of how these things typically unfold.
Given my background with cancer patient advocacy groups and having navigated similar situations before, I think I have a fairly clear grasp of how these processes work.
The road to hell is paved with good intentions.

Unfortunately, we all know exactly what the state of our healthcare system is like,
and even I wouldn't be entirely certain about this claim. Because...
the real question is what kind of instructions doctors are receiving and what they are actually allowed to mention to a patient—or not—given the constant lack of funding!
They are essentially discouraged from issuing certain referrals or prescribing expensive medications,
and various committees step in to second-guess your specialist's opinion, almost as if they think they are poisoning us with chemo or other therapies that we don't actually need.
So, perhaps the doctor was just being well-meaning,
but in this nightmare of budget cuts, they didn't dare put it in writing.

It's truly unfortunate.

Well, the Department finally stepped in. They demanded an explanation from the Mayo Clinic as to why the medication wasn't approved immediately—and wouldn't you know it? Suddenly, we can have it by tomorrow.

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Chicago... Now my pulmonologist is trying to make me feel guilty just because I flagged this issue to the Department of Health. Really? It’s not even about "looking someone in the eye," it's more than that... Am I actually in the wrong here?

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