ruggedfox11 said:Hahahhahha, oh man, you actually have me laughing here.
Is your husband at least even slightly less difficult about food than my father was? I find it absolutely impossible to get him to eat anything remotely healthy. He’s been a picky eater his whole life, but now it’s reached a whole new level of stubbornness. On the bright side, he does love fruit—so at least he's getting some vitamins in without having to swallow a pill. This article mentions the importance of omega-3 fatty acids. Should I just buy him supplements to cover that gap? Also, is it okay to take those while undergoing chemo, or is there some risk that they act like an antioxidant that might interfere with the treatment?
ruggedfox11 said:We basically go through this whole list on a daily basis, but honestly, forget about those fancy supplements or influencers—what we actually need is just a solid grocery list of foods that boost platelet counts. :-)
I feel like this article should really be titled: "Food items my dad wouldn't touch even if his life depended on it" (though, granted, he’ll still eat meat, eggs, and fish).
ruggedfox11 said:Are you giving him beet, carrot, apple, lemon, and honey juice? It sends my husband's red blood cell count through the roof... And bacon and popcorn for the white blood cells, apparently.
He won't touch beets because they trigger his gag reflex. Honestly, it does the same to me, so I can certainly empathize. Instead of beets, he’s sticking to berries. As for the bacon, we’ll be enjoying that together. 🙂 That said, his white blood cell count hasn't been an issue from the get-go, nor have the red blood cells; his real struggle has always been the platelets.
Rachel Williams said:Where exactly are we stuck with the blood work? If we have any clue what's going on, maybe we can actually be useful... there are more of us here than just one person, after all.😉
Terry Lopez18 I was reading through your story... I am so incredibly sorry things turned out this way. I imagine things feel impossibly heavy right now, but I truly hope you can find some small measure of peace in knowing that your dad isn't suffering anymore.🙂
Platelets. 😢 I've been scouring the internet, but honestly, I haven't found anything remotely helpful regarding how to prevent issues or speed up the recovery process. I’m starting to panic a bit because of the delay...
Dad was supposed to head in for his final chemo session today, but they ended up pushing it back a few days because his blood counts were looking pretty rough. He did get a transfusion, which helped him feel a bit better physically, though mentally... well, he’s having a hard time. 😢
Terry Lopez18, please accept my deepest condolences. I am just relieved to hear you were spared the physical pain at least. Sending you a lot of love, even though we haven't officially met—every heartbreaking update on this thread hits me right in the gut.
Rachel Williams said:Robin Diaz4 mentioned that to you as a potential option if it becomes necessary. It doesn't mean he’s definitely going to undergo that specific treatment, nor does it mean he won't—we just have to wait for the CT scan results before we know anything for sure.
That was my takeaway from the conversation as well. ruggedfox11, nobody told me for certain that he would be switching to a second line of treatment; it was presented merely as one of several possibilities. The CT scan is scheduled for about three or four weeks after his last cycle. The doctor explained that we need to give the chemo enough time to actually do its job, which is why we aren't rushing straight into imaging. By the end of the third cycle, Dad had recovered quite well once everything settled down. Immediately following the treatment, things were pretty rough—I wouldn't even call it the worst he's been, but it was bad. However, right before the fourth cycle started, he actually began tackling tiny little household chores again (very minor things, mind you, but still a massive improvement over lying in bed all day). He even managed a walk without losing his breath too badly. His appetite is back, too; he eats like a termite and is actually gaining weight. I’m really hoping this trend continues through the fourth round. The only thing that truly worries me is his negative attitude. Then again, he's always been that way, and I realize how difficult it is to change a person's temperament, especially under these circumstances. He even gets "annoyed" with the other patients in the outpatient clinic who come in for therapy at the same time as him, simply because they're smiling. Meanwhile, he acts like he's heading into a firing squad every single time.
Honestly, I’m at a loss here. We’ve already sought second opinions from two different specialists, and they both came back with the exact same conclusion. I can't wrap my head around the logic of adding a second line of treatment either way—I just don't see why it would be necessary, nor why it wouldn't be. As I mentioned at the start, I have absolutely zero experience dealing with cancer; I don't even personally know anyone who has gone through it, aside from one friend, so I'm completely flying blind on how these protocols actually work. It’s possible the doctor only brought up a second line as one of several theoretical options...
sybirian, hang in there. I really hope they can get your mom's pain under control soon... My dad is actually finishing up his first round of chemo next week, and then it’s just the waiting game until the CT scan. If there's any silver lining right now, it's that he seems to bounce back pretty well after the sessions, even if we have to deal with those annoying bouts of anemia every now and then. The doctor brought up the possibility of radiation or moving on to a different line of chemo today. In the meantime, I'm still deep in the rabbit hole of researching clinical trials...
My father went through something similar—he was given a Reglan injection and an IV drip after he couldn't stop vomiting four times in a row. Lately, though, his behavior has been... let's just say "regressive." He’s acting like a stubborn toddler, refusing to touch anything remotely healthy, and snapping at anyone who breathes in his direction. It’s a vicious cycle: he gets worked up over nothing, which triggers his breathing issues, making him even more agitated. Then, the moment I suggest calling the doctor or heading to the ER, he suddenly decides he’s perfectly fine, despite clearly being in distress. To top it all off, he wakes me up two or three times a night claiming he isn't feeling well, only to tell me in the morning that I shouldn't "bother" his wife because he’s "doing just fine now."
I’m constantly scouring the landscape for clinical trials. Most of what’s currently on the table is either already full or we've missed the window because they’re looking for patients who haven't even started their initial treatment yet—or worse, they're still just gathering candidates and who knows when they'll actually get off the ground. Still, I refuse to lose hope!
Just wanted to check in and give an update. Dad starts his final cycle before the CT scan next week. For now, the primary tumor is holding steady—actually, it seems to be shrinking compared to previous scans. I’m feeling a bit lost on what comes after this fourth round of chemo, though. Does he move straight to a second-line treatment? I can't quite wrap my head around the protocol, especially since I know it isn't going to disappear entirely, and honestly, Dad is having a harder and harder time tolerating the platinum-based stuff.
I’m with you on that one. Honestly, I find it absolutely mind-boggling that they wouldn't even want to debride a purulent wound. It's frankly appalling.
stormyfalcon68 said:... When my dad's condition took a turn for the worse, they didn't tell him straight out, though they did sit my mom and me down for the truth. He eventually figured it out himself once they decided to pull the plug on chemo and further treatments, but the doctors played it off by saying we should just wait a month or two for him to recover a bit before deciding on next steps...
That’s exactly the kind of "sugarcoating" I was worried about. It would be devastating if, out of some misguided sense of empathy, none of us actually knew how dire the situation really was...
ruggedfox11 said:Don't be ridiculous; they aren't actually sharing findings with the whole family, they just pass them along to other specialists. If doctors were out there falsifying reports—writing down conditions that don't exist—then the attending physician could prescribe the wrong treatment, and they'd be facing malpractice lawsuits left and right. But look, you can always seek a second opinion if you suspect the lab results are being doctored.
I mean, sure, it sounds a bit archaic for the 21st century when everything is digitized and logged into the system somewhere... my dad’s doctor is an old-school lady from a different era, so who knows how things used to work back then...
The only thing that makes sense to me is that as a patient, I have the right to tell a doctor, "Hey, don't share my diagnosis with my family." I have a friend who didn't even realize her father was sick until he passed away. Her dad refused chemo because he knew his family would hold him accountable for it.
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.
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...
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.
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.
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...