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

Robin Diaz4 said:Dad is doing a little better today. God, this illness is just exhausting... honestly, I’m almost afraid to even post here—I don't want to tempt fate by sounding too optimistic.

Is he feeling any improvement?

Greetings to everyone participating in this difficult discussion. Does anyone here happen to have any insight regarding this relatively new cancer drug called Keytruda? From what I gather, it is supposedly used to treat various types of cancer regardless of their location, provided the patient presents with a high number of mutations. Does anyone actually understand the clinical implications of that? I saw somewhere that it costs 15 $0.00 per pill. For instance, it says something like this here:
https://www.mayoclinic.org/tests-procedures/immunotherapy/about/acm-20385156

dustyscout8 said:Hello everyone... I know this is a heavy topic to dive into, but I was wondering if anyone here might have some insight regarding that new cancer drug—I think it's called Keytruda. From what I've gathered, it's supposedly used for all sorts of cancers regardless of where they're located, specifically for patients who show a high number of mutations. Does anyone actually understand what that implies in practical terms? I saw somewhere that there's a 15% $0.00 success rate per pill... or something along those lines. For instance, it mentions things like this here:
https://www.mayoclinic.org/diseases-conditions/melanoma/symptoms-causes/syc-20355222

I actually asked my husband's pulmonologist about it this morning. She mentioned that here in the States, it's primarily being utilized for melanoma and gastrointestinal cancers, though she said she’d look into it a bit more deeply for me.

Emily Martinez61 said:Angela Wright,

do you happen to know the exact way I should be taking Keytruda? I’ve been taking it right at the end of my meals—basically one bite of food, then one tablet of Keytruda with a gulp of water, repeating that five times. Then I finish off the rest of my meal. Is that alright? The instructions say to take it with food or at most within half an hour after eating.

I don't have any firsthand experience with this, but if that's what the official instructions specify, I assume you're doing just fine.

dustyscout8 said:Hey everyone, I know this is a heavy topic to dive into... Does anyone happen to know anything about this new cancer drug called Keytruda? Apparently, it’s being used to treat all sorts of cancers regardless of where they are located, specifically for people with a high number of mutations. Does anyone actually understand what that implies? Somewhere it mentions a 15 $0.00 per pill rate... For instance, it says here:
https://www.mayoclinic.org/diseases-conditions/cancer/overview/ycsc-20374612

"Cancer" isn't just one single thing; it's an umbrella term for a massive spectrum of malignant diseases including carcinomas, lymphomas, leukemias, sarcomas, melanomas, and brain or bone tumors. They are fundamentally different because of their cellular makeup. Take carcinomas, for example—which are the most common and widespread—they originate from the epithelial cells of organs. Because of that, treating them is a completely different ballgame compared to treating a brain tumor or a sarcoma, which stem from mutated connective tissue cells. Now, every one of these types has its own specific subtypes and unique mutations. Some biological mechanisms are similar enough, though, that researchers try to target those shared pathways to block them, essentially buying our immune system enough time to step in and wipe out the tumor itself."
That’s great news, but let’s be realistic: because the biological differences are so vast, there will never be a "magic bullet" cure that works for every single type of cancer. The only universal factor we can leverage to keep things under control is our own immune system.
When it comes to using this specific drug—specifically expanding its application and proving it actually works—we need large-scale, randomized clinical trials. Right now, the only way to legally access this treatment outside of its FDA-approved indications is by enrolling in those clinical trials.

I really appreciate it, Angela Wright. I had honestly assumed that participating was strictly limited to those specific clinical trials—the ones you mentioned to me just a few pages back in this thread. Let’s hold onto the hope that one day we’ll finally see a targeted cure for every single one of these cancer subtypes. Thank you so much for taking the time to walk me through all of this.

ruggedfox11 said:Is your dad doing any better?

I honestly don't have much of substance to contribute right now... today has just been one of those days where nothing goes right. We'll just have to see how tomorrow unfolds...
How is your husband holding up?

Robin Diaz4 said:I don't really have anything insightful to add... today just isn't going well at all. We'll just have to see how things look tomorrow...
How is your husband doing?

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Regarding that—he's been coughing quite a bit. It looks like a cold caught up with him, so his doctor decided to push this last round of chemo back to Monday and put him on some antibiotics instead.

I guess I really am my father's daughter... his cough is honestly starting to terrify me because it sounds absolutely brutal. He ended up heading back to the hospital today. 😢

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Robin Diaz4 said:He’s just like my dad was... honestly, his cough is really starting to worry me because it sounds so rough. He actually ended up heading back to the hospital today. 😢

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It’s the same thing with mine... it sounds like there's just a ton of congestion stuck in their lungs that they can't clear out. There's even this wheezing sound when they breathe. I’m leaning towards thinking it’s just these sudden shifts in the weather—both my little one and I have been stuck inside dealing with this heatwave.

Did she leave him because of the coughing?

Here’s something interesting...
I had always assumed that getting a consultation with a thoracic surgeon would be an incredibly difficult process to navigate. Today—driven by a mix of pure frustration over this heatwave and the fact that there isn't a single opening for a CT scan anywhere—I decided to pick up the phone and call a few contacts in Washington, D.C., looking for recommendations for specialists who handle microcellular issues. I checked the databases, and honestly, it seemed easy enough; they just told me to email the full set of records to a specific address. So, great, right? Everything seems smooth!
But then I get home, and out of sheer anger—mind you, I have never, ever called a professional contact like this in my entire life—I end up calling my sister, who happens to be a close friend of one of the top thoracic surgeons in San Francisco. As we’re chatting, since she’s such a good friend of mine, I mention the situation. Her response? She tells me no—not him, and certainly not anyone in Washington, D.C.—because everyone else here in San Francisco is just cutting corners or ignoring the severity of these cases, treating them as insignificant. She says, "Just reach out to him directly," and keep in mind, she’s the head nurse at the pulmonary department...
So now I’m left wondering: who can you actually trust? Should I follow the advice of these near-strangers from the databases, or should I listen to my friend?

ruggedfox11 said:It’s like he’s got lungs full of mucus he just can't clear out. Every breath comes with this whistling sound. Honestly, I'm blaming these erratic weather swings—both my little one and I have been stuck dealing with a nasty bug lately.

So, why did they release him? Was it because of the coughing?

Everyone at the hospital keeps giving me that look and saying, "Unfortunately, you understand the diagnosis... his immune system is compromised right now..." and then they just trail off. It's exhausting. He actually seems a bit better today, though. He's still struggling to cough up all that phlegm, though. 😢

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Robin Diaz4 said:Everyone at the hospital keeps giving me that same look—you know the one—and saying things like, "Unfortunately, you understand what this diagnosis means... his immune system is quite compromised now..." and then they just trail off, leaving the rest to my imagination. It’s exhausting. On the bright side, he seems to be doing much better today, though he's still working through a lot of congestion and coughing up mucus.😢

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We actually found that Mucinex really helped him when he was dealing with that heavy coughing.
I honestly can't stand it when people talk like that—it's so patronizing.

ruggedfox11 said:Now that's an interesting point...
I used to think getting into thoracic surgery was the hardest part of this whole process. Today, though, I’m just plain fed up. Between this heatwave and the fact that there isn't a single opening for a CT scan anywhere in sight, I finally snapped. I decided to start dialing around Washington, D.C., looking for specialists who actually handle microcellular cases. And you know what? I check their databases only to find everything is wide open—they tell me to just email over my complete medical records to some random address. Oh, fantastic. Just great.
I get home, absolutely livid—and trust me, I have never once pulled strings in my life—so I call my sister to see if she can pull some favors and get this friend of mine scheduled for a CT scan. Since one of the top thoracic surgeons in San Francisco is a close family friend, I casually bring him up. She shuts me down immediately. She tells me neither he nor anyone in Washington, D.C. can help, because everyone here in San Francisco handles their own stuff and his position isn't high enough to matter. She basically told me to just call him myself. Apparently, since she’s the head nurse on the pulmonary ward, she thinks she runs the whole show.
I’m asking myself: who can you actually trust? Do you go with some random person recommended by a stranger, or do you stick with a close friend?

The guy who's being dragged along by all that fake hype.

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Angela Wright said:The one that fake news pulls you toward.

I can't bring myself to follow the hype... none of those outlets really grab my attention. My mind is focused on just one specific surgeon—the only one in the US who handles centrally located tumors—while another specializes in microcellular cases. There’s a third guy who also practices privately at Radiochirurgija (maybe I could reach out there to see if they have any openings for me), and then there’s a fourth, who is basically just a close family friend.

Honestly, though? I think I might just play on their ego a little bit—you know, something like, "Since you're supposedly the best, why not step up to the challenge and prove it?" I mean, let's be real, surgeons can be such massive egos.

ruggedfox11 said:I can't bring myself to go to Spurius... none of them really grab my attention. My brain is stuck on one guy who’s the only one in the US performing surgery on centrally located tumors; the second one is already handling microcellular stuff; the third works privately at Radiochirurgija (we could probably reach out there to see if they have any openings); and the fourth is just a family friend I've known forever.

But I'm thinking about playing on their egos—you know, like, "if you're actually the best, then step up to the plate and prove it." I know surgeons live for that kind of validation.

Good Strategy

I posted a bit ago about my mother’s ocular melanoma, but nobody really responded. It doesn't matter, I guess... she’s going in for surgery tomorrow. The tumor is just too large for radiation, so they have to remove her entire eye...

Keep everything crossed that the rest of her health stays clear... I don't think chemo will be necessary, but I just hope it isn't too late🙂

silentbison17 said:I posted a while back about my mom and her ocular melanoma, but nobody really responded—not that it matters now. She’s heading into surgery tomorrow. The tumor is just too massive for radiation, so they have to remove her entire eye...

Just keep your fingers crossed that everything else stays clear... I don't think chemo will be an issue, but I just hope we aren't already too late.🙂

Man, I am so sorry, I missed your previous post.
A friend of mine had the exact same thing with her husband, and he ended up losing the eye too. I don't know the specifics since she kept things private, but he passed away about five years after the diagnosis. I can't say for sure if that was the direct cause, though.

Angela Wright said:Honestly, I missed the previous post.
She had her husband watching over her the whole time, and he had to step outside too. I don't have all the specifics—she didn't say much to anyone. She passed away about five years after the diagnosis, though I'm not sure if that was the direct cause.

Unfortunately, those are the same grim prognoses I see everywhere—five years max... she's in surgery right now... just waiting...

I’ve got such a pounding headache—it's been going on for a few days now. It feels especially intense right above my right eyebrow, and honestly, it really flares up whenever I try to lie down. The only thing that seems to offer even a moment of relief is Tramadol, but it's just a temporary fix. I'm trying my best to get an appointment with my doctor so she can order a CT scan before we start any other treatment. I just don't feel like I can write this off as a simple cold, or blame it on the changing seasons, or even dismiss it as a side effect from medication... there's just so much swirling around in my mind right now.