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

restlessowl3 said:Thanks for all the advice. She’s also been started on Lumidol for the pain and Moduretics to help flush out that excess fluid. For now, we’re just waiting on tomorrow’s CT scan with simulation to figure out the next steps. Personally, I’d prefer she stays on the dexamethasone—when she was on the Medrols, things didn't go well at all.

How's everything looking? Any improvement?

Something just crossed my mind. My mother used to do physical therapy three times a week, and my daughter used to give her these wonderful massages—she actually knew how to perform lymphatic drainage. Mom's arms would swell up constantly, and my daughter could really help drain them out. Maybe you could try some very light massage using baby oil? Just let your fingertips glide over the skin—think more of a gentle stroking motion rather than anything forceful. Use light, circular movements moving from the bottom upward.

Has anyone mentioned or suggested seeing a physiatrist to get a prescription for home-based physical therapy? It is absolutely vital that the body gets as much rehabilitation as possible during this process.

stormytinker4 said:I read the studies ages ago—not just those specific ones, but every single one out there! You really ought to sit down, go back to the basics, and start with the first link I provided and work your way up from there. You spend this entire time arguing with me without having actually clicked on a single link I’ve sent! How can you even attempt to debate this? It’s like trying to critique a movie without actually watching it! And honestly, why on earth would you send me a Wikipedia link written by random internet users? 😁... Is that supposed to be a credible source?? And I have no idea what you mean by section three... does it actually claim that a papaya is the same thing as a paw paw??? Let me try explaining this one more time—papaya is *Carica papaya*, while Paw Paw is *Asimina triloba*. It's like comparing an apple to a pear. I hope you finally see the distinction and realize that Paw Paw and papaya aren't even remotely similar, let alone the same plant..
You keep acting like you're the only one who earned expertise and wisdom through the agony of your mother's illness and helping others, but then you dismiss everyone else's lived experience as nothing more than hearsay. You don't hold a monopoly on suffering, grief, or the desire to help; I went through all of that with my dad, and I'm still going through it, just like many others here. Once I provide you with actual, legitimate sources—not some crowdsourced Wikipedia page!!—so you can educate yourself, since you clearly care, you turn around and give *me* a Wikipedia link and insist they're the same thing 😁... Education isn't your private property, and the rest of us—regular people—spend our whole lives learning things too 🙂.. I wouldn't dare step into a debate about something I wasn't informed on, but apparently, that doesn't stop you from lecturing others on how they should suffer, how they should learn, what they should read, where they should look, and so on. That is the fundamental difference between us: I only engage when I am well-informed, as you can plainly see, whereas you feel entitled to toss advice at anyone just because your father had lung cancer and you happen to be helping other cancer patients right now. I truly respect everything you do and the help you provide, but I'll say it again: you don't own this. Other people have the experience, the knowledge, and the heart to help, so please, just allow someone else to post something that might actually assist someone without jumping down their throat calling them names or dismissing them as uneducated... If I understood correctly, the whole point of this forum is to help the sick through advice, links, and shared experiences. I think I've said my piece. Honestly, I'm sorry I even have to write this, but I have to, because it’s not that you're right, it's that you aren't right at all! I'm done with this topic, and my one bit of friendly advice to you is to actually read up on the things you choose to argue about... (and preferably something better than Wikipedia)..

🤔
I'm no academic, but I've been reading through this post, your previous posts, and my responses to you, and I genuinely cannot fathom what triggered such a rude, abrasive reaction from you. 🤷
Right on the first page, you laid out your findings regarding paw paw and those "documented" cases where people in terminal stages, off chemo, consuming paw paw and flaxseeds, etc., supposedly recovered...
So, someone asks what paw paw actually is, you drop a link, then the moderator demands actual clinical human trials to back up your claims, so you start dumping a mountain of studies about paw paw. Then I asked you to please just distinguish between the in vitro stuff, the in vivo stuff, and the actual human clinical trials, and you sent me three studies—none of which were conducted on humans. After that, I tried to explain how conventional medicine follows strict, standardized protocols to ensure something is scientifically proven and recognized as an official treatment... honestly, I feel bad if you can't wrap your head around that, but I didn't make those rules up.🤷
The bottom line is, this whole mess happened because you haven't grasped that this forum operates under rules strictly tied to conventional medicine. What you’re preaching here belongs in a PDF for alternative medicine or some holistic wellness blog.

And regarding Wikipedia...😂 I provided that link for a reason, but clearly, you missed my point. Fine, papaya is obviously a completely different species from the paw paw you were talking about—my bad, a massive oversight on my part.🙂

In any case, I want to apologize if I inadvertently insulted your feelings or your intelligence; that truly wasn't my intention.
I wish you the best.🙂

@everyone
I'm done engaging on this topic because it has spiraled completely off-track and turned into pure spam.

Angela Wright said:So, what’s the status? Any improvement at all?

Something just crossed my mind. My mom used to go to physical therapy three times a week, and her therapist was great at massage—she even knew how to do lymphatic drainage. Mom’s hands used to swell up constantly, and the therapist could really help drain them out. Maybe you could try some light massage using baby oil? Just very light, barely touching the skin, more like stroking it. Use gentle circular motions moving from the bottom upward. Don't press down.

Has anyone mentioned seeing a physiatrist to get a prescription for home physical therapy? It’s really important to rehab the body as much as possible wherever you can.

We’re finally moving past a standstill. We finished the CT simulation, and once the results are ready (should be a week or two), she starts radiation and hospital treatment. They lowered the dex; she’s still on 8 mg in the morning, but down to 4 mg at night. And we start the patches tonight. As for the diuretics, they seem to be doing the trick. The swelling isn't nearly as bad, and she's starting to get some feeling back in her arm and leg. Yesterday, she actually managed to make it to the bathroom with a little help. So, we’re making slow progress toward better days.
As for the physiatrist, we’ll see what happens at the primary care doctor today. I know you can request an appointment through the local clinic, but she’s just not in any condition to deal with that right now. I might be able to pull some strings, though I’m not holding my breath.

restlessowl3 said:We’re finally moving away from a complete standstill. They finished the CT simulation, and once the results are ready—probably in a week or two—radiation and hospital treatment will kick off. They've started tapering her Dex; she's down to 8 mg in the morning and 4 mg at night. We're also starting the patches tonight. As for the diuretics, they seem to be doing the trick. The swelling isn't nearly as bad, and she's starting to get some feeling back in her hands and feet. She even managed to shuffle her way to the bathroom with some help yesterday. So, we're seeing some slow but steady progress toward better days.

Thank God for that. Just a heads-up though: that edema is likely going to flare up again once the radiation starts, so expect them to bump that Dex dose right back up.

Angela Wright said:Thank God for that. Just a heads up though, the swelling is probably going to flare back up once they start radiation, so she’ll likely end up needing a higher dose of dex again.

If they need to increase it, let them. Her pain has actually gone down thanks to the Lumidol, and once the patches kick in, hopefully she won't be feeling much at all.

Linda Patel21 said:feralsurfer72, my heart truly goes out to you regarding your father's diagnosis; please know that I understand the sheer weight of what you're carrying right now because I have walked through that same valley of shadows myself. I just want to encourage you to find whatever strength remains within you, as both you and your dad will need it for the battle ahead. No matter how grim the doctors make things sound, there is always something—however small—that can be done to ease a patient's discomfort, because they are the ones bearing the heaviest burden. Just stay by his side and pour all your love into him; I am sending you both so much strength, hoping for the best possible outcomes and as little pain as humanly possible.

Thank you, dear; we’re currently facing a grueling marathon of gastroscopies, colonoscopies, and CT scans... and while I desperately want to believe everything will turn out okay, the test results have been devastating. I’ve spent days and nights lost in tears, feeling as though the grief itself might actually kill me. He knew, of course, even though I tried so hard to mask it from him. I eventually had this sudden, sharp realization of how selfish my own mourning felt; he is the one who needs my help, my comfort, and my attempts to bring a smile to his face. I am trying my absolute best to be strong for his sake, but truthfully, I still have to take something to calm my nerves before bed, otherwise, I would simply spend the entire night weeping.

Hey everyone,
I really need to give a huge shout-out to Angela Wright—her experiences and insights have been a massive help to me. About 16 months ago, my mom was diagnosed with a Grade IV glioblastoma. During surgery, they actually managed to remove way more than the doctors expected, and honestly, things were looking up for a bit. She could walk, talk, and basically function normally. We went through chemo and radiation at the same time, and even the regular MRIs showed one part of the cancer had completely vanished—the surgeons were actually pretty surprised by that, especially since she was still on her sixth cycle of Temodar back then. That was back in May 2013. But then, by September, the MRI started showing changes, which was confirmed again by an MRI earlier this February (she hadn't had any treatment between those two scans besides Tegadol). Seven days ago, a medical board was supposed to decide if we should push forward with more chemo, but she just wasn't doing well that day—it was the first time since the surgery that she struggled to walk and seemed so slowed down. I feel totally helpless in this situation. They sent us home with instructions to give her two doses of dexamethasone in the morning and one at night. But she’s just getting worse. She’s lost use of her left side now—which, I guess, the doctors did warn us might happen when we were deciding on the surgery—and they started her on Mannitol too, but nothing is helping. It's just downhill from here. We’re heading back to the board in three days, but I don't have much faith they'll approve more chemo.
Is there any chance for a miracle? Like, can someone actually bounce back from this? I'm trying my best to stay level-headed and look for practical advice.
Sorry if I'm rambling too much here—thanks in advance for anything you can share.

My dad was just diagnosed with colon cancer. He has one tumor at the entrance of the colon and another much smaller one near the top. He's been dealing with bloody stools for about two months now. Has anyone here dealt with something similar or have any insight? Is it actually worth staying home and waiting for surgery?
We were told things won't change much over the next three weeks, but he has to undergo surgery within that window. Does anyone happen to know Dr. Leonard Patlj? Thanks in advance for any help you can give.

Kenneth Wilson6 said:Hey everyone,
I really need to give a special shout-out to Angela Wright because her insights and experiences have been a massive help to me. My mom was diagnosed with Grade IV glioblastoma 16 months ago. During surgery, they managed to remove way more than the doctors originally anticipated, and she actually did quite well afterward—walking, talking, and functioning normally. We went through concurrent chemo and radiation, and at one point, the scheduled MRI showed that a portion of the cancer had completely vanished (the surgeons were genuinely surprised; she was still on her sixth cycle of Temodar back then). That was in May 2013. However, by September, the MRI started showing changes, which was confirmed again in early February (she hadn't had any therapy between those two scans besides Tegadol). Seven days ago, a medical board was supposed to decide if we should proceed with more chemotherapy, but she wasn't feeling up to it—it was the first time since the surgery that she struggled to walk and seemed sluggish. I'm powerless in this situation; they sent us home with instructions to give her two doses of Dex in the morning and one at night. Things are just going downhill from here. She’s lost function on her left side (they warned us this might happen when deciding on the surgery), and they started her on Mannitol, but nothing is helping—it's just getting worse. We head back to the medical board in three days, but honestly, I don't think they'll approve more chemo.
Is there any chance for a miracle? Can someone actually bounce back from this? I'm trying my best to stay level-headed and look for practical advice.
Sorry if this is a bit much, and thanks in advance for any thoughts or comments you can share.

Unfortunately, this sounds like a recurrence. It's likely the tumor is growing and creating new edema (swelling) that's pressing on critical areas, causing these neurological episodes. If the swelling is hitting parts of the brain already compromised by the tumor itself, that damage is permanent. You should take that MRI report straight to a neurosurgeon and ask if there's any possibility for something like Gamma Knife surgery.
Your mom definitely needs an increased dose of Dexamethasone. Ideally, she would be hospitalized so they could titrate the dosage—using Mannitol to bring the swelling down and then stabilizing her with a specific dose of Dex so she can eventually return home in a more stable condition.
Look, based on what I've seen personally, I can't offer any happy news here😢. With my own mother, it followed this exact pattern—the body just shuts down part by part. This disease is brutal, and this is how it plays out. Usually, everything being done is just an attempt to delay the inevitable for as long as possible.
Stay strong and try to keep your composure. Don't spiral into panic. As ugly as this illness is, you need to stay steady so you can handle everything that comes your way. Just take it one day at a time and deal with things as they evolve. Don't try to live in the future.

Carol Smith27 said:My dad was just diagnosed with colon cancer. He’s got one tumor right at the entrance of the colon and another much smaller one near the top. For two months now, he's been dealing with bloody stools. Has anyone here dealt with this or does anyone actually know what we're looking at? Is it even worth staying home and just waiting around for surgery?
We were told things won't change much for him over the next three weeks, but that the surgery absolutely has to happen within that window. Does anyone have experience with Dr. Leonard Patelj? Thanks in advance for any help.

So he was diagnosed three weeks ago? When did they schedule the procedure? As far as surgeons go, Patelj is top-tier. What specifically are you trying to find out?

Angela Wright said:So he got the diagnosis three weeks ago? When is his surgery scheduled? Dr. Miller is an excellent surgeon. What specifically are you looking to find out?

We got the diagnosis on February 19th. We're hoping he can head into the hospital this Friday, March 7th... everything is still very new and a bit overwhelming for us. He actually feels great—eating well and looks fine. But honestly, the bloody diarrhea is what's worrying us most. He could have gone with another doctor already, but he refused and is insisting on Dr. Miller. We've read all the glowing reviews about him, but I'm wondering if anyone here has had any personal experience with his work. Also, does anyone know how long the hospital recovery usually lasts after this kind of procedure, and what the next steps look like?

Carol Smith27 said:We got the diagnosis on February 19th. We're hoping to head into the hospital this Friday, March 7th... everything is still pretty new and a bit overwhelming for us. He’s feeling great, eating well, and looks strong. But honestly, that bloody diarrhea is what's scaring us most. He actually had the chance to have the surgery done by another doctor, but he turned them down—he’s dead set on seeing Dr. Miller instead. We’ve read all the online reviews about him, but I’m wondering if anyone here has had actual personal experience with his work? Also, does anyone know how long the hospital recovery usually lasts after this kind of surgery and what the next steps look like?

Look, getting that surgery scheduled as soon as possible is really the priority here. If he had made the call to go under the knife earlier, any competent surgeon could probably have handled it just fine, because let's face it—these types of procedures have become incredibly routine these days. As for that bleeding, it might not even be directly tied to the cancer itself; it’s entirely possible he’s dealing with hemorrhoids that were aggravated by the diarrhea.
I don't have any personal history with Dr. Miller, but I haven't heard a single bad thing about him—if anything, the reputation is solid.
Recovery and the overall timeline are complete wildcards. It all hinges on the patient's baseline health, how invasive the procedure turns out to be (whether they need an ostomy, how much of the bowel is removed, whether peristalsis kicks back in), and general post-op stability, like how they handle anesthesia.
Once the surgery is wrapped up, there’s usually a window of about three weeks to a month—that's the standard timeframe—before the oncology treatments begin. During that gap, the pathology report on the removed tissue will come back. That report is the roadmap; it tells everyone exactly what type of colon cancer we're fighting, its grade, and the stage, which then dictates the entire follow-up treatment plan.
So, the immediate goal is the surgery. Let's just hope the cancer hasn't spread too far into metastases.

My dad's been super aggressive and just plain rude lately—it’s like all his worst traits decided to dial up to eleven at once. It's honestly exhausting dealing with these outbursts. Have any of you dealt with this kind of behavior with glioblastoma? One of our doctors warned us this might happen—though he was pretty blunt and rude about how he broke the news, I guess he called it—but here we are. Is there a chance the edema is causing this?

Angela Wright said:Actually, getting the surgery done sooner rather than later is pretty critical. If he had opted for the procedure earlier, someone else likely would have performed it just as well; unfortunately, these types of surgeries are becoming very common nowadays. This bleeding he’s experiencing might not even be directly tied to the cancer itself. It could just be hemorrhoids that flared up due to diarrhea.
I don't have any personal experience with Dr. Miller, but I haven't heard anything negative about him—quite the opposite, actually.
The recovery process and the overall outcome are highly individual. It depends on the patient's general health, how invasive the surgery needs to be (whether he'll need a colostomy bag or not, how much of the bowel is removed, and how quickly things start moving again), and his general post-op state, like how he handles anesthesia.
Once the surgery is over, there's usually a window of about three weeks to a month before oncology treatment begins. During that time, they'll have the pathology report back on the removed tissue. That will confirm the exact type of colon cancer, its grade, and the stage, which dictates the next steps in the treatment plan.
So, first comes the surgery. Let's just hope the cancer hasn't spread to any metastases yet.

He'll need a colostomy, and there's probably a 90% chance he'll have it for life... the doctor mentioned they'll likely remove about 12-15 inches of the bowel because the last colonoscopy showed significant widening... we aren't from this area, so I was mainly wondering when he might be able to come home... thank you so much for the answers and the help...

goldencrane3 said:Dad has become incredibly aggressive and abrasive lately. It’s like all his worst traits have suddenly been dialed up to eleven, and honestly, it's becoming exhausting for us to deal with these outbursts. Have any of you dealt with this kind of behavior with glioblastoma? One doctor warned us this might happen—he was pretty blunt and frankly a bit rude about it, but he seems to have called it. Could this be caused by edema?

My mom didn't act out like that, but she definitely became mentally dull over time. I've seen cases where even benign tumors cause major personality shifts. I feel terrible for you; you're going to need a massive amount of strength to get through this. When things feel impossible, just try to remember that it isn't him talking—it's the demon of the disease speaking through him.😢
Look, the primary issue is the tumor itself. Edema develops as a side effect of the tumor growing, and as that swelling increases, it creates physical pressure on brain centers. That manifests as various neurological outbursts, most often affecting motor functions. As for the personality changes, that’s more about the tumor itself disrupting the brain chemistry and receptor activity because those specific centers are being hit.

Angela Wright said:It wasn't like that with my mom, but the whole process just kind of dulled her mind. I’ve heard about benign tumors causing personality shifts like that too. I feel for you—you're gonna need a ton of strength. When things get overwhelming, just remember—it's the disease talking through her, not her actual self. 😢
Look, it's primarily the tumor at play here. As the tumor grows, the edema follows, and that growth creates physical pressure on brain centers—which shows up as all sorts of neurological outbursts, usually hitting motor skills first. That personality shift? It's mostly the tumor itself messing with the brain chemistry and receptors because those areas are being hit directly.

The doctor mentioned the tumor actually shrank, but the swelling is clearly worse because of the radiation itself—so yeah, we're all pretty confused by the mixed signals. Really hoping they start her on Dex soon so things hopefully stabilize. I honestly feel for his sister and mom dealing with him; he was a handful even before the tumor, and now, unfortunately, it’s just been dialed up to eleven...

Huge thanks to Angela Wright for the reply,
I’ve basically come to the same conclusion—things have clearly taken a turn for the worse once there's no reaction to the mannitol or the dex. Now the real headache is figuring out how we're supposed to manage all this at home. I'm working during the day—got a 2-month-old baby at home—and my brother handles the night shifts since my sister-in-law is eight months pregnant. So, I honestly don't know what the most humane move is here. I get this sinking feeling we're just prolonging the inevitable because we aren't medical professionals or anything.
We're heading back to the medical board meeting on Wednesday, so we'll see what they have to say then.
Thanks again.

Kenneth Wilson6 said:I can't thank you enough, Angela Wright, for the response.
It’s become pretty clear to me that things have taken a turn for the worse since she isn't responding to mannitol or dexamethasone anymore. Now the real question is how we manage all of this at home. I'm working during the day (I have a two-month-old baby), and my brother watches her at night (his wife is eight months pregnant), so I'm really struggling to figure out what the most humane course of action is. Honestly, I feel like we're just prolonging her suffering because we don't have the medical expertise to know better.
We're heading back to the medical board meeting on Wednesday, so we'll see what the specialists say then.
Thanks again.

If this is edema caused by cerebrospinal fluid buildup, they can drain it mechanically. You need to have a serious talk with a neurosurgeon about it. They drill a tiny hole in the skull and use a syringe to release the fluid. The relief and improvement happen almost instantly. The only reason doctors hesitate to do it is usually due to practical or logistical constraints.
I'm not sure where exactly you're located, but based on how you write, it sounds like you might be in the Midwest or somewhere similar. I know there are hospice facilities available, and honestly, finding a spot in one might be the best move for both her and your whole family. Mom needs 24-hour care, and if you guys aren't equipped to provide that level of intensive nursing, hospice is the smartest option in the long run. Just a heads-up: this kind of state can last a long time. My own mother stayed completely immobile for over a year from the moment she started losing motor function until the very end.

Angela Wright said:If we're talking about edema caused by CSF buildup, they can actually drain it mechanically. You really need to sit down with a neurosurgeon about this. They drill a tiny hole in the skull and use a syringe to drain the fluid—it provides instant relief. Honestly, the only reason they don't do it more often is just because of the practical logistics involved.
I'm not sure where you're located, but based on how you're writing, I'm guessing you might be out in the Midwest or something. Look, I know there are hospice facilities available, and honestly—I think it would be best for both her and you to look into getting her settled there. Your mom needs 24/7 care, and if you aren't able to manage that level of constant supervision, hospice is the best move for everyone in the long run. Just a heads-up—this kind of situation can drag on. My own mom was bedridden for over a year from the moment she started losing mobility until the very end.

I’m living in Chicago. We’re heading to an agency tomorrow to talk to them about hiring 24-hour nurses—mostly because Mom won't even hear the word "hospital" without losing it. We'll see what the medical board tells us, and I'm going to ask specifically about the edema (maybe that's why they're pushing for a CT scan?). Also, can anyone tell me the best way to prevent pressure sores?