Jamie Brooks4 said:To be honest, we’re also leaning toward thinking the doctors are missing something because this whole situation makes zero sense, I just don't know where to go for a second opinion.🤷 My dad is still stuck in the hospital, so we haven't even seen the actual test results yet. I even called his private gastroenterologist, and the guy basically told me there's no other option besides trusting the surgeon who performed the operation.🤷
How did you all manage to get answers for your aunt?
And can someone please explain to me: is it actually possible for someone with advanced cancer to have mostly normal test results, only a tiny number of malignant cells found in the abdominal fluid, and still feel perfectly fine?
Unfortunately, given how widespread this is, the ascites, and the malignancy confirmed within it, we aren't talking about anything benign here.😢 This isn't just some hunch from a surgeon who has enough experience to recognize a case the moment he sees it; it's backed by the pathologist who analyzed the fluid sample. There really isn't room for debate here because when it comes to diagnosing malignancy, the pathologist's word is the final authority. A primary tumor doesn't necessarily have to be large; it can be small enough to slip right past a gastroscopy or colonoscopy unnoticed. Considering his age and how aggressively this has spread, it’s most likely colorectal cancer, and they’ll probably suggest chemotherapy for that if they can't pin down the exact origin. What kind of tumor markers did they run, and what were the levels? Everyone is built differently, and nobody reacts to illness in the same way. Just last week, I buried my aunt who was diagnosed with highly invasive breast cancer three years ago. She refused to accept the diagnosis and didn't opt for surgery until a year later. She ended up hospitalized for lymphedema this spring, skipped radiation (she initially refused, then found holding her arm in the required position too painful to bear), stayed on X until the very end, and all her tests looked great—though personally, I suspect she had a metastasis in her brain. She just ran out of steam and faded away... you see all kinds of stories.
Alex Hayes2, I can't speak to veterans' rights, but as a cancer patient who needs brain radiation that isn't available here in New York City, I think we should be getting our travel expenses covered. Honestly, you should be hospitalized for this. Brain radiation can cause side effects like cerebral edema, and driving around in this heat is just not something a patient in that condition should be doing. You really need to fight like hell to secure a hospital bed.
swiftpanther102, I know there’s a specific medication manufactured over in Mexico that actually works for hiccups like this. It runs about $6.75, but I can't quite wrap my head around the name 😢 right now. Unfortunately, it isn't approved here in the States, so you won't be able to pick it up at any local pharmacy
swiftpanther102 said:Is the second round of chemo usually harder to stomach than the first?
So, here’s the situation: my dad has been dealing with constant vomiting for four days straight following his first round of chemo. He’s actually scheduled to head back in for the second session in just a couple of days. They're running him on a PE protocol—something involving platinum—where he gets the first dose over a four-hour stretch, followed by the second dose given in two one-hour increments. He’s still second-guessing how he'll handle the second round. Even though his test results show he actually took the first one pretty well, he's still absolutely terrified of what might happen next. 😢
The rule is that there are no rules, and you’ve got to stick to that—just sit tight and see how the situation plays out.
Charles Murphy6 said:That’s exactly what keeps me up at night😢 When I asked my doctor the other day if he was even a candidate for being transferred to a small Midwestern town, she just gave me this stunned, blank stare and asked, "Wait, you *want* him moved to a small Midwestern town?" I had to clarify that I don't want him there—quite the opposite—I'm terrified he'll end up stuck in one of those places. For the moment, they’re keeping him in the ICU, and there hasn't been any talk about moving him anywhere else. To be perfectly honest, I know absolutely nothing about the medical facilities in that small town in the Midwest or the other small town in the Midwest, other than the fact that they have a reputation for being subpar, and I have no clue if they even possess the specialized equipment or life support Dad actually needs right now. I am truly, deeply grateful to the entire ICU team; they are genuinely trying to make this easier on both him and our family. I managed to catch a nurse today, though, and she made it very clear that there is absolutely no way Dad is being discharged from intensive care anytime soon. The thing is, they don't really have a dedicated primary physician assigned to him there because, as I've mentioned before, patients are monitored 24/7 and all the major decisions are handled during staff meetings. I can only pray that there won't be any more suggestions to move him elsewhere for the foreseeable future. They attempted to sit him up earlier, but it was a total failure... he needed help just to get toward the restroom, but we couldn't even manage that. Maybe this is off-topic, but does anyone know if the conditions in those small towns in the Midwest have changed at all, or is everything still just as bad as it used to be?
From what I understand, they did some renovations. Unfortunately, though, they frequently see patients who really belong in hospice care, and we are still facing a chronic shortage of those facilities. If your dad requires intensive care, then obviously he has to stay where he is. Regarding the doctors, I've been working closely with the maternity pathology unit, and the policy there is that patients are assigned by room (each doctor has their own ward), but generally speaking, all major decisions are made by a medical board. However, nothing moves forward without the department head's blessing, and he stays very active with patient rounds. Maybe try approaching it that way to get more info. The nurses should definitely know which doctor is primary and responsible for your father's care.
Charles Murphy6, there’s actually an option to transfer someone to a rehabilitation facility or a long-term care center, like one of those smaller clinics you might find in a small town in the Midwest or a small town in the Midwest. This usually happens when the hospital staff submits a formal proposal, arguing that the patient’s specific needs can be fully met at a specialized facility and they no longer require the high-level resources of a major metropolitan hospital.
Prof. Molls Radiation Therapy Munich Klinik-fuer-Strahlentherapie Rita Engl Chief Secretary tel. +49 (89) 4140-4501 Fax: -4882 Clinic and Polyclinic for Radiation Therapy and Radiological Oncology Klinikum rechts der Isar, Ismaninger Str. 22
The contact info is listed above. If you want to know the full scope of what they can actually treat, you’re better off asking them directly. I had a friend who went through this; she was dealing with lung metastases from breast cancer. Unfortunately, she didn't find out about this specific treatment option until her health had already been hammered by years of constant medical intervention. While it's true that the tumors actually retreated, the reality is that her heart ultimately gave out from the cumulative damage.
Just Google San Francisco; if you head to their site, you'll find a contact option specifically for seeking a second opinion. You can reach out directly—just introduce yourself as your doctor to make the inquiry easier—or better yet, coordinate with Dr. O. The specialists over in Munich are usually pretty responsive when you get in touch.
wiredotter75, have you sent your test results over to San Francisco yet? I’ve seen firsthand that when things hit a wall here, they often end up suggesting five different procedures or clinical trials over in Europe—and since we're part of the European Union, getting access to those is actually much smoother now. On that note, I’d really suggest getting a second opinion from the Technical University of Munich. They are absolute pioneers in proton beam therapy, which is way more effective than the standard stuff and has proven to be a game-changer for treating metastases. Have you even asked about trying Xelod while you're still finding your footing? Look, this doesn't have to be the end of the road; you just need to start looking for answers in different places. I'll track down the link and contact info for those folks in Munich and post it right here for you. Hang in there.
wiredotter75 said:Angela Wright, don't get worked up here but I am absolutely not buying this whole "palliative care" thing. If it comes down to that, I’d rather just pull the trigger myself. I promise you right now, cancer isn't going to be what takes me out—certainly not while I'm stuck in some palliative bed. No way, no how. I'll find a quiet spot out in the hills, pour myself a glass of my favorite bourbon, and take care of business myself. I won't let cancer win... no way.
Look, there's no need to get angry, but your understanding of palliative care is incredibly narrow and frankly, completely wrong. You're looking at it through this limited lens of "end-of-life" stuff, like it's just about Hospices. That is only one tiny, extreme sliver of what this field actually covers. In places where the medical system is actually functioning correctly, people live for years with metastatic disease because they have access to palliative support that keeps their quality of life high. The primary goal is to extend the period of time someone spends living well. It is actually the exact opposite of what you described—it's not about heading home to wait for the end once curative options run dry.
I’m really sorry to hear things have taken a turn for the worse. I get it—after fighting this battle for so long, burnout is inevitable, but don't you dare throw in the towel. Dig through the latest research, keep sending those medical files... everything I’ve learned from my own journey is that there’s always one more avenue to explore. Even if it isn't a total cure, sometimes just finding better palliative care makes all the difference. Hang in there.
My body finally hit its limit, and I ended up in the ER this past Thursday. Everything turned out fine, though—the little one arrived weighing 5 lbs 1 oz and doesn't need any extra help; she's fully developed. I'm still in the ICU while they work on getting my blood pressure back to normal, but I’ll likely be moved to a regular room tonight. Honestly, thank God this part of the story has a happy ending. Thanks to everyone for all the support and prayers.
wiredotter75, I’m having an absolutely brutal day today. A little while ago, I was actually praying to God to either give me some strength or just stop tormenting me altogether. My situation isn't even comparable to yours, but being stuck in this hospital for over a month now—dealing with these constant blood pressure swings, this killer back pain, plus everything else that comes with dealing with the American healthcare system and the doctors here—it has completely drained me. I am so swollen with edema that I’m honestly just counting down the minutes until they can finally hook me up to a catheter and drain this all out of my system... and yet, according to my doctor, my condition is still considered "satisfactory." Honestly, I wanted to thank you for your post, because knowing you, I feel like I don't even have the right to sit here and whine. Hang in there; you really are incredibly brave and an exceptional guy. Be proud of yourself! And if you can, take a little swim at sunset for me this summer too.
swiftpanther102, there was a shift in the protocol because we had to reassess the overall situation and how things were unfolding. To get the specific details, you’re going to have to talk to the oncologist directly.
I honestly don't think Propolis holds a candle to something like beta-glucan when it comes to antioxidant strength. You should probably > about it, though I doubt it would cause any major issues. Also, look into echinacea injections; I've heard they can be quite effective for lung cancer. You might be able to track some down at that pharmacy near Dolac.
Linda Patel21 said:It’s me again, but I don't really have anyone else to turn to besides you guys. Why does Dad keep running a fever around 100.4°F almost every single night? He's actually recovering somewhat since getting home from the hospital. I've been giving him beta glucan, but a lady mentioned that Immuno AHCC might be better. Has anyone here tried it? Which one works better? Please let me know.
Look, nobody can tell you which one is "better" because, at the end of the day, they're essentially the same thing. It all comes down to how your body reacts to them, and honestly, the price tag might just be playing tricks on your head via the placebo effect. As for that fever, you absolutely have to call the doctor immediately and get him started on antibiotics. If there's an infection brewing, any kind of oncology treatment is completely off the table until that's cleared up.
loneraven162 said:Hey everyone, Dad just got his appointment scheduled for July 3rd—I'm already tearing up... He was actually telling me last night, sounding so defeated, that he’s sure nobody will even take him seriously because of his age. 😢Fingers crossed!
Poor guy... if that were actually how things worked, they would have just told you he’s a lost cause instead of actually scheduling him. They are going to deal with him and try to fight for every bit of quality time he can get.
Linda Patel21 said:I totally blanked on asking if I should pick up Graviola or Tahebo tea for him. Since he can't handle everything right now, I really want to know which one would be better.
When it comes to supplements like Prosur or Ensure, doctors usually recommend them for patients who aren't eating much and are dropping weight fast. As for what's best for Dad, his doctor needs to be the one to decide and prescribe any specific herbal remedies; at the end of the day, it's all about individual circumstances. Let Dad make the call himself.
Linda Patel21 said:Thanks for the advice; I’ll try to talk to him. Everything feels so heavy right now because I’m dealing with my own Chron too. I’m terrified of making the wrong move... I just want to help him. Sometimes it feels like I’m doing absolutely nothing to fight his illness. Part of me stays rational during the day, but then the tears just start flowing. I think you know exactly what I mean.
I do know, and honestly, that’s where the danger lies—you’re letting his struggle become your own. This diagnosis is happening to him, just like Chron is happening to you. No one else can step in and fight these battles for you. The best thing you can do is be each other's rock, since you're both navigating this together.
loneraven162, that’s pretty much how it goes when they're on annual leave. Honestly, the absolute worst times to get hit with a diagnosis or try to kickstart treatment are during the summer rush or around the Christmas holidays and New Year—basically whenever everyone is out skiing. I know the waiting game drives you crazy, but nothing life-altering should happen in just a week or two. Just stay on top of them, be persistent, and keep pushing.