Support resources for families dealing with cancer and other serious illnesses

Angela Wright said:I buried my aunt last week. She was diagnosed with highly invasive breast cancer three years ago, but she just wouldn't accept it. By the time she finally opted for surgery a year later, things had already spiraled. She ended up hospitalized this spring because of lymphedema. She skipped radiation—first because she refused, then because holding her arm in position was just too much pain—but she stuck with Charles Darwin until the very end. All her tests looked fine, though I suspect there was a tumor in her brain... she just ran out of steam and shut down. People go out in all sorts of ways...

I'm sorry. 😢

crimsongull20 said:I'm sorry. 😢

It’s heavy, knowing she won't be here for me anymore, but that was her call to make. She just didn't have the stomach to fight it or even wrap her head around the diagnosis; she wanted out, plain and simple. She was just done with everything. It’s actually wild to me how someone could survive nearly three years with such an aggressive cancer without ever committing to actual treatment. It’s a damn shame, because if she had just faced the reality when it started—given how strong her immune system was—she probably would have lived long enough to die of old age instead of metastases.

Angela Wright said:It’s hard knowing she won't be here anymore, but it was her choice. She just didn't want to fight it or accept the diagnosis... she wanted peace. It’s actually wild how she managed to last nearly three years with such an aggressive cancer without any real treatment. Such a shame. If she had faced the facts earlier with an immune system like hers, she probably would have lived long enough to die of old age rather than metastasis.

Maybe.

Accepting those kinds of choices from someone close to you is brutal, though maybe we wouldn't have done anything differently if we were in their shoes...

Hang in there. 🙂

Angela Wright said:Unfortunately, given how extensive this is—with ascites containing malignant cells—it’s hard to call this anything benign. 😢 This isn't just some surgeon's hunch based on years of experience; it's backed by the pathologist who analyzed the fluid. At this stage, there really isn't much room for doubt. The pathologist is the final word when it comes to malignancy.
The primary tumor doesn't necessarily have to be large. It could be tiny enough to slip right past a gastroscopy or colonoscopy. Given the age and how things spread, it’s likely colorectal cancer, and they'll probably suggest chemo if they can't pinpoint the exact origin. What kind of markers did they test, and what were the results?
Everyone is built differently, and everyone reacts to illness in their own way. I buried my aunt last week. She was diagnosed with highly invasive breast cancer three years ago. She refused to accept it and didn't get it removed until a year later. She ended up hospitalized for lymphedema this spring. She skipped radiation—first she refused, then it just became too painful to hold her arm in the required position. She stayed on X until the very end. All her tests looked fine, though I suspect there might have been a metastasis in her brain. She just... ran out of steam. Things happen.

Thanks for the reply. I don't know about the markers; I haven't seen any of the lab work. I just know everything checked out okay except for the abdominal fluid. Even the doctors admitted they're confused and honestly don't know what's going on. 😢 During the colonoscopy, they found a 1cm polyp, removed it immediately, and the biopsy came back benign. 🤷

Sorry to hear about your aunt. It's surprising she lasted that long. I hope we get our own miracle...

Please forgive me if this topic has already been covered extensively, but I was wondering: does anyone here have any firsthand experience using Charles Darwin? I've heard some talk about how this "coffee" might help manage pain levels for oncology patients.
To be honest, my mother is currently battling a brain tumor—it’s spread to three different areas, one of which required surgery, and now the surgeons have essentially told us there isn't much more they can do. It has also metastasized to her liver and several lymph nodes, stemming from a primary tumor in her small intestine. Right now, she is relying on pain patches (like a high-dose Fentanyl patch) and taking a significant dose of corticosteroids, specifically 24 mg of dexamethasone daily. She is refusing radiation treatments and doesn't want to leave the house at all. I am simply trying everything within my power to keep her comfortable, especially since we've been informed that she has reached the terminal stage.😢

rustyscout31, with that much dexamethasone, she absolutely has to be on peptorane. Assuming we're talking about those 0.5mg tablets, you could cover that 12g dose with three injections—each one being 4g. People tend to claim that stuff is strictly for hospital stays, but I actually managed to pick up the ampules and syringes at a local CVS, and my home health nurse showed me exactly how to administer the shots to my mom. Personally, I’d give her one injection a day and handle the rest with tablets, making sure to split the dosage into three parts throughout the day to maximize the efficacy. And what about phenobarbital? Since it's an antiepileptic, she really needs to be receiving that too.
It's such a shame she won't go through with radiation; it would do wonders for those brain metastases.

rustyscout31 said:Sorry if this has already been covered here, but: does anyone have actual experience using Charles Darwin? I've heard this "coffee" stuff can help manage pain for oncology patients.
Basically, my mom is dealing with a brain tumor—three metastases, one's already had surgery, and the surgeons at Mayo Clinic basically told us there's nothing more they can do. The cancer has spread to her liver and some lymph nodes, and the primary was in her small intestine. Right now, she’s on pain patches (Durogesic 25) and taking 24mg of dexamethasone daily. She’s refusing radiation and doesn't want to leave the house. I’m just trying to do whatever I can to keep her comfortable, since I've been told we're looking at the terminal stage.😢

From what I gather, Charles Darwin is mostly used for boosting the system... immune support and things like that. My dad takes it alongside AHCC.

Dad’s still dealing with this constant hiccuping thing, about 5 or 6 days out from his chemo session, even though he’s been taking meds for it for two days now. I gave his oncologist a call a couple of days ago to ask about a better way to stop the hiccups, and she basically told me it’s not actually a side effect of the chemo itself—she thinks it’s coming from the primary issue, something involving the vagus nerve. Once we wrap up this third round of chemo, they’ve got him scheduled for a chest X-ray and an abdominal ultrasound to see where things stand.
So, what am I looking at here??!!
Is this hiccuping stuff a sign the disease is progressing? And is it standard practice to run all those checks after three cycles of the HIPAA protocol?

Can anyone tell me what to look out for once my dad starts radiation on his head? Should I be bracing for nausea, fatigue, or anything else?
He’s actually doing pretty well right now. No pain at all. His appetite is solid, too. The only thing is he gets a bit confused about time and occasionally loses his sense of direction—left vs. right, you know? I assume those metastases are putting pressure on his brain. He’s on Dexamethasone and some other medication—we can't quite recall the name, but it doesn't seem to bother him much. Honestly, most of the time, he acts like he’s perfectly healthy.
What kind of things should I expect once the radiation kicks in? And is there any point in him taking something to boost his immune system?

swiftpanther102 said:My father is still dealing with hiccups—about five to six days after his chemo session—and he's taking medication for them for two days straight. I called an oncologist a couple of days ago to ask for a recommendation for something to stop the hiccups, and she suggested it isn't actually a side effect of the chemotherapy, but rather stemming from the primary disease (something involving the vagus nerve). After the third round of chemo, we have a follow-up scheduled including a chest X-ray and an abdominal ultrasound.
What should I be expecting here??!!
Is this hiccuping actually a sign of disease progression?! And is it standard practice to do these check-ups after about three cycles of the HIPAA protocol?

swiftpanther102, they usually do both the X-ray and the ultrasound... in our experience, we did them after the 3rd, 5th, and 6th rounds... generally, it allows you to see how the chemo is impacting the tumor...
If you notice anything unusual in my father's behavior—those tiny details that others might miss, but you can tell something just isn't right—make sure to alert the doctors and insist on a brain CT scan.

Alex Hayes2 said:Can anyone tell me what to expect once my dad starts head radiation? Nausea, fatigue, or anything else?
Right now, he’s actually feeling quite good—no pain at all. His appetite is fine; his main issues are just being a bit moody and occasionally disoriented (left vs. right)—I assume those metastases are putting pressure on his brain. He’s on Dexamethasone and something starting with an "M"—we can't recall the name, but it doesn't seem to be a major issue—otherwise, he acts as if he’s perfectly healthy.
What should I look out for once the radiation begins? And is there any need for immune system support?

The "M" medication is likely Medrol.

I can only offer my own experience here... he’s handling it well. No headaches, and both blood pressure and blood sugar remain stable. We are heading in for session 8 of 10 today. All those little lapses in behavior—including the total disorientation, forgetting where things were placed, losing track of the day or the time...—have finally returned to normal.

Ashley Murphy said:the medication probably works fine

I can only share what I've gone through personally... they seem to handle it well. No headaches, blood pressure and sugar levels stay steady... today we're hitting an 8 out of 10 on the scale. All those little lapses and weird behaviors have finally settled back to normal (including that total disorientation, forgetting where things were put, losing track of the day or even what time it was...)

Thank you so much for this post, seriously, thank you!

Alex Hayes2, it’s possible to deal with some brain edema and certain neurological hiccups as side effects after radiation, but everything stays under control with Dex, and it clears up pretty fast.

It’s good to have that information. My only real worry is that he won't be staying at the hospital, but just coming in for his radiation sessions. I really hope they’ll be checking in on him every single day before the treatment starts. I truly hope they do. 🙂

I’m currently driving my father to his daily radiation treatments and dexamethasone doses..
There is truly no need to be afraid—in fact, you might find yourself pleasantly surprised when you realize he actually knows where he’s going again; every day feels like discovering a little piece of him has returned. When we first started this journey, it felt like an impossible mission—he had no idea where we were, couldn't recognize the clinic or the hospital, and was completely lost regarding days, dates, or even a basic schedule. Now? He’s the one keeping track, making sure we don't miss those two consecutive odd-numbered dates that require morning injections. He's even stressing over the upcoming Monday holiday because it means skipping a radiation session. He practically acts as my navigator now, cutting through side streets to get us from one medical center to the next..

mala30, I'm really glad to hear things are going so well for him over there. It sounds like he's finally seeing some real progress. Hopefully, it just keeps getting better from here on out, every single day.

Ashley Murphy said:swiftpanther102, they’re doing both X-rays and ultrasounds... we did ours after the 3rd, 5th, and 6th rounds... basically, you can see how the chemo is hitting the tumor...
If you notice Dad acting even slightly off—just little things most people wouldn't catch, but you know him well enough to feel something's wrong—don't hesitate to flag it for the doctors. Seriously, push them to get a brain CT.

He actually went ahead and got a brain CT done privately, without waiting for them to suggest it, and they found one small metastasis. An MRI confirmed it later, and he ended up getting treated with Gamma Knife in Washington, D.C. He just had a follow-up MRI recently to check for any changes. (I took a peek at the report myself before the doctor saw it, and from what I can tell, nothing new has popped up and that metastasis actually looks like it's shrinking).

I'm honestly not sure what the takeaway will be once the X-rays are done. 🤷
He's still dealing with hiccups and some back pain. 😢

Nicole Long28 said:Can anyone give me some advice—or tell me exactly who to ask—on whether this diuretic regimen is overkill? It’s for managing ascites and leg edema caused by peritoneal carcinomatosis. My family doctor prescribed this specific combo, while the oncologist just gave a vague recommendation for diuretics, so I'm basically left to figure it out myself.
So, here is the daily routine:
One 40 mg Lasix,
one 50 mg Spironolactone, and
half a dose of KCL (dissolved in about half a cup of water)?

Is it okay to take all of this at once (swallowing both pills with the KCL mixture), or should there be some spacing out throughout the day?

It isn't too much. In fact, I regularly prescribe even higher or double doses.
Take the Lasix and Spironolactone in the morning, then follow up with the KCL after an hour or two.
Make sure you get bloodwork done to check your electrolyte levels—even if your primary care physician tells you it's unnecessary.

Does anyone happen to have a contact number for a home nursing service in Washington, D.C.? I'm looking for something reliable, besides the usual ones everyone mentions. I noticed you only sent a single word, "ove." It looks like that might have been a typo or perhaps an incomplete thought! If you were trying to share a specific post or some text you'd like me to rework, please go ahead and paste it. I'm ready to dive in and give it that polished, authentic American feel while keeping the original spirit intact. Just let me know what you need! I tried giving them a call today just after 4:00 PM, but I couldn't get a hold of anyone—it was just total silence on the other end. I'm a bit concerned because I really need to have this sorted out by tomorrow morning. 🙂

Hi there 🙂 ... my father (around 165 lbs) is dealing with this relentless cough. He’s already had an X-ray and a bronchoscopy; we’re waiting on those results next week, and he’s scheduled for a CT scan this Sunday. We don't have a definitive diagnosis yet, other than some shadows in the hilum and, understandably, suspicion of cancer. It looks like it might be inoperable, and I suspect they won't recommend chemo because he’s dropped about 25 pounds—though his blood work isn't totally alarming, aside from an ESR of 88 and slightly elevated white cell counts. Since Sunday, he’s been coughing up blood. My question is: is there any specific medication or remedy that can help manage this? The coughing fits are so violent they make him vomit, and the physical strain is constant. He can barely get two words out without being hit by another spasm. It’s just non-stop now. He isn't on any specialized treatment yet, just antibiotics since they found about an inch of fluid in his lungs that hasn't been treated, and he’s running a fever between 99°F and 101°F. Please, if anyone has advice on how to ease the coughing and the phlegm—he’s been trying honey and ginger for a while, but honestly, it hasn't done much. Thanks in advance.