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

restlessowl3 said:The Dexamethasone isn't working right. It’s supposed to be anti-inflammatory, but it’s doing nothing for her. When she was on the Medrol, her muscles didn't ache. Now, we try Ibuprofen or Tylenol, but once the pain starts, it just won't quit for hours. Plus, she's incredibly swollen—totally waterlogged. Is there any chance her primary care doctor could prescribe a morphine-based patch or maybe some diuretics to handle the swelling, given her diagnosis?

restlessowl3, my dad was on Medrol too. His face swelled up, then his neck. Angela Wright already mentioned "moon face." That's exactly what happened to my father. Eventually, he tapered off the Medrol slowly. You cannot stop cold turkey; please, be careful with that. Once he finished the taper, the "moon face" disappeared and his face returned to normal.

Just popping in to acknowledge this thread still exists...
I spent so much time searching for answers here while my dad was sick. You all really helped me through it—Angela Wright and a few others especially. I honestly don't know if I would have figured half the things I did without this place. This thread was everything to me during his illness; it gave me a way to actually help him and access information I couldn't find anywhere else, mostly thanks to everyone sharing their own experiences.
It’s been about three and a half months since he passed. I guess I feel some peace knowing I did everything I possibly could for him. It was advanced stage cancer, though, so there wasn't much more to be done. My eyes are blurring up just typing this, because I still can't quite wrap my head around the fact that he's gone.
But I suppose that's just how it goes. Life writes these sad stories sometimes, but this community was a huge help during those dark, ugly moments.
Angela Wright, thank you so much for always being here for us and for all the advice you give.

Nancy Lee, hang in there. I know everything feels incredibly raw right now, but I promise there will come a day when you can look back on those beautiful times with your dad and smile through the tears. Life keeps moving forward, but the memories? Those stay etched in your heart forever. Sending a hug.

silvercanyon7 said:restlessowl3, my dad was on Prednisone. His face swelled up like a balloon, then he started getting edema behind his ears too. Angela Wright already pointed out that it’s the classic "moon face" effect. That’s exactly what happened with my old man. Eventually, he started tapering off the steroids. You can't just quit cold turkey—that's a dangerous game, so be careful there. Once he phased it out, the swelling vanished and his face finally returned to its normal shape.

Unfortunately, when you're dealing with brain tumors, dex is a permanent, irreplaceable part of anti-edema therapy. 😢

Quick question—my dad’s fighting glioblastoma. He finished his first round of radiation and Temozolomide, and now he’s started the five-day cycle at 285mg. Today is day four, and honestly, he’s having a rough one—constant vomiting, hasn't eaten all day... What's tripping me up is that they haven't given him any Dexamethasone yet, and nobody's even told us what to do when things go south like this. I’m pretty sure he’s entitled to Torcan via IV—should I be hitting up his primary care doctor about that? Also, is there any way to get the vials so I could just handle the subcutaneous injections myself?

Angela Wright said:stormytinker4, since you clearly know way more about this than I do, could you please help me separate the in vitro studies from the in vivo and clinical human trials specifically regarding cancer? There are just too many listed above, and there’s no way I can sift through them all in the tiny window of time I have—plus, I think I see everything from medical data to earwax removal shampoos in here.
Thanks!
On the subject of being informed—not everything you find online is accurate or actually relevant. I assume we can agree on that.

Happy to help, but honestly, I'm just as pressed for time as you are. When I was digging into this, I read everything I could get my hands on. Here are a few key links; you'll mostly find the in vitro and in vivo studies there, though you can also order or buy full papers if you want to dive deep.
As for finding information, it's all about knowing where and how to look. If someone really needs to know, they pick it up fast. For me, forums like this one are still the best resource. I spend a lot of time reading other boards where you can learn directly from people's actual experiences...

http://www.ncbi.nlm.nih.gov/pubmed/8371627

http://www.ncbi.nlm.nih.gov/pubmed/909798

http://www.ncbi.nlm.nih.gov/pubmed/7764028

There are a million links out there regarding Paw Paw research—in vitro, in vivo, human trials, etc. You just need to Google it a bit more deeply. I really don't have the bandwidth to hunt down every specific detail you might be curious about, so if it's important to you, I trust you'll navigate it just fine 🙂. Besides, Paw Paw isn't strictly for treating carcinoma, as you noticed yourself, but that's already covered in the introductory links I posted. 😉

stormytinker4 said:I’d love to help, but honestly, I’m just as pressed for time as you are. When I was digging into this, I scoured everything I could find. Here are a few starting points—you can find plenty of in vitro and in vivo studies through these links, and you can usually order or read the full papers if you want to go deep.
Regarding the research, it all comes down to knowing how and where to look; anyone who actually needs answers learns how to hunt for them pretty quickly. For me, forums like this one are the best resource. I spend a ton of time reading international boards where you pick up direct, real-world experiences from people living through it...

http://www.ncbi.nlm.nih.gov/pubmed/8371627

http://www.ncbi.nlm.nih.gov/pubmed/909798

http://www.ncbi.nlm.nih.gov/pubmed/7764028

There are millions of links out there regarding papaya research—in vitro, in vivo, human trials, etc. You just need to put a little more effort into your Google searches. I really don't have the bandwidth to spoon-feed you every specific detail you might be looking for, but if this is truly important to you, I trust you can navigate it yourself 🙂. Besides, papaya isn't just some miracle cure for cancer, as you already noticed, and those details are right there in the introductory links I provided. 😉

Sorry if I came off as condescending; based on what you wrote, it sounds like you already have some experience with this, so I figured you wouldn't need your hand held. 🙂

Looking at the links you posted, except for the first one, these are all in vitro studies. That means they are pre-clinical stages that might eventually lead to in vivo or clinical trials, which is where they mention potential efficacy. In that sense, we absolutely cannot talk about "treating" cancer. What’s being discussed here is that certain isolated compounds show an effect on leukemia cells or ovarian cancer cells in mice, for example. Unfortunately, we see this all the time: a study shows great results in mice, but when it hits humans, it either fails completely or is less effective than what's already on the market, so companies stop investing in it. My point from my previous posts stands: papaya is definitely a healthy fruit and a powerful antioxidant—just like garlic, aloe, or propolis. All these plants have shown effectiveness in cell cultures, but talking about an encapsulated compound at a specific concentration and dose acting as a medical treatment for a specific type of carcinoma in a clinical setting? We just aren't there yet.
Papaya won't hurt you; it's healthy. But claiming it cures cancer is a massive stretch, sorry. 🤷

goldencrane3 said:My dad is battling glioblastoma. He just finished his first round of radiation and Temozolomide. Now he’s started a five-day cycle of 285mg Temozolomide; today is day four, and he's feeling miserable—vomiting and hasn't eaten all day. What puzzles me is that they haven't prescribed him any dexamethasone yet, nor have they given us any guidance on what to do when he feels this sick. I believe he's entitled to Torcan via IV; should I be asking his primary care physician about this? Is it possible to get the ampules so I can administer it subcutaneously myself?

Has your father had surgery? If the tumor was successfully resected, they won't bother with dex unless there’s active edema present. Usually, with Stage IV treatments, patients get a dex injection specifically to combat nausea, but I'm honestly not sure if that's a standard rule for Temozolomide. Regardless, you need to clear this with the oncologist.
What really helped my mom were air-popped popcorn and flaxseeds that were soaked in a glass of lukewarm water. You let them sit for half an hour, strain the liquid, and drink it. Flax releases a mucilage that coats the stomach lining. It’s soothing, has a nutty flavor, and isn't too revolting to swallow.
Regarding the dexamethasone, those ampules are strictly for hospital use. Unless a specialist writes the script, a primary care doctor can't just hand them out. Typically, people take the oral tablets at home, though a GP could theoretically authorize ampules from their central supply—they just rarely do. In my case, a private pharmacy sold me the ampules, and a visiting nurse showed me how to administer them (even though she technically shouldn't have) and it's done intramuscularly, not subcutaneously. Keep in mind that dex comes with its own set of nasty side effects, so unless it's an absolute emergency, it's better to hold off. There are other effective ways to manage nausea. Talk to the oncologist!

Angela Wright said:Did dad have surgery? If they actually removed the tumor, they won't be using dex unless there's swelling involved. With Stage IV treatments, people usually get a dex shot for nausea, but I'm honestly not sure if that's the standard rule for Temodar. Either way—just ask the oncologist.
What really helped my mom were popping some popcorn in the air and soaking flaxseeds in a glass of lukewarm water. Let it sit for half an hour, then strain it and drink the liquid. Flax releases this mucilage that’s great for the stomach lining. It’s soothing, tastes kind of nutty, and isn't bad at all.
Regarding the dex—those ampules are strictly for hospital use. Unless a specialist writes it in, a GP can't just prescribe dex. Usually, people take tablets at home, though a GP could technically pull some strings to get ampules, but they rarely bother. A private pharmacy sold them to me once, and a home health nurse showed me (even though she shouldn't) how to administer it intramuscularly rather than subcutaneously. Dex has its side effects and they aren't pleasant—if it's not an absolute emergency, better to skip it. There are other effective ways to handle nausea. Talk to the oncologist!

You misunderstood me—I was talking about Torecan ampules, which are given subcutaneously and act as a central antiemetic. He takes Reglan as a mucosal protector, but for the actual vomiting, I think Torecan would work better. After radiation, the tumor started receding, but the swelling is pretty extensive—it's hitting the whole parietal area, not just the temporal part. He isn't speaking clearly, and while he isn't feeling too nauseous, I can tell that now (after years of being out of touch with his kids) he just wants to talk to us constantly. I really want to make things easier for him.

Do popcorn actually help with nausea?

goldencrane3 said:You misunderstood me; I’m talking about Torcan ampules administered subcutaneously—it's a central antiemetic. He’s taking Reglan to protect his mucosal lining, but if we're talking about stopping vomiting, Torcan would probably be more effective. After radiation, the tumor actually started receding, but the edema is much more extensive now; it’s hit the entire parietal region along with the temporal area. His speech isn't great, though he doesn't seem to be in too much pain. It’s just that after years of being estranged from his kids, he seems to want to talk to us constantly now, and I really just want to make him more comfortable.

Man, I got totally turned around myself. 😛
Look, he absolutely needs to be on Dex since he's having these flare-ups; there's almost certainly edema involved here. You need to get an oncologist to recommend both the steroid and a specific nausea protocol immediately! It’s honestly shocking to me that he’s managed to hold up this well without any Dex.
My mom had similar issues where she dealt with bouts of nausea, though she didn't actually vomit. Then again, she was on heavy doses of Dex the whole time, so that likely helped mask the symptoms.

If anyone happens to be looking for some goose meat or maybe some medium-sized diapers, feel free to shoot me a private message so I can get them over to you. We ended up picking these up for my grandfather just in case he needed them when he was coming home to visit, but unfortunately, it turns out they weren't actually necessary after all.

Angela Wright said:I'm totally confused here 😛
Look, he definitely needs the dex—if there's swelling, edema is likely involved. Get an oncologist to recommend it right away, along with something for the nausea! It's wild to me that he’s holding up this well without any dex so far.
They were replying to my mom. She had bouts of nausea, but didn't actually throw up. Then again, she was on high doses of dex the whole time, so that probably helped.

Thanks so much—we'll give the popcorn thing a shot, and we're definitely going to push for the dex. He's doing great, honestly—walking up to 6.2 miles miles a day, sleeping fine. The only real issue has been his speech, but even that feels like a minor thing compared to everything else. Thanks for being so quick to reply and for sharing what you know—hard-earned experience like yours really helps. 🙂

Thanks for all the advice, everyone. She’s also been put on Lumidol for the pain and Moduretics to help her body gradually flush out that excess fluid. For now, we’re just waiting on tomorrow’s CT scan and simulation to figure out the next steps. Honestly, I’d prefer if she could just stay on the Dex, because things didn't go nearly as well when she was on the Medrols.

restlessowl3 said:Thanks for all the advice. She’s also been put on Lumidol for the pain and Moduretics to help flush out that excess fluid. We’re waiting on a CT scan with simulation tomorrow to figure out the next move. Honestly, I’d prefer she stays on the Dex if possible—when she was on the Medrols, things just didn't go well.

If they're using Moduretics, they absolutely have to pair it with Kalinorm; otherwise, her electrolytes could tank, and that’s a recipe for disaster. If you don't see a significant improvement in her condition, there's really no point in pushing the Moduretics. My mother ended up looking completely bloated—huge distended abdomen—and after an ultrasound, the doctors told us it wasn't actually fluid retention, but fat buildup caused by a wrecked metabolism from being on the Dex.

Angela Wright said:If you're taking Moduretic, you absolutely have to take Kalinor with it. Otherwise, your electrolyte levels will tank completely.

Angela, I have to correct that statement.

Moduretic is actually a potassium-sparing diuretic. Generally speaking, you wouldn't be advised to take potassium supplements like Kalinor or potassium chloride alongside it. There are extremely rare exceptions—cases involving severe hypokalemia—but even then, it requires strict medical supervision and constant electrolyte monitoring.

Otherwise, no.

Maria Fisher46 said:Angela, I really need to set the record straight on this one!

Look, Moduretic is a potassium-sparing diuretic. Because of how it works, you generally shouldn't be pairing it with potassium supplements like Kalinor or potassium chloride. There are incredibly rare exceptions—cases involving severe hypokalemia where a doctor is watching your every move and running constant electrolyte panels—but those are outliers.

For anyone else? Absolutely not!

Thanks for catching that.
I also want to stress something I missed in my original post: if there isn't a significant improvement in how you feel, you absolutely have to ask your doctor if it's even worth staying on the medication. Don't you dare decide to stop or change things on your own.

Angela Wright said:Sorry for being such a pain. I figured from what you wrote that you actually knew your way around this stuff since you've dealt with it firsthand, so I assumed it wouldn't be an issue for you. 🙂

Looking at the links you posted, most of these—aside from the first one—are in vitro studies. We’re talking pre-clinical work that eventually needs to move to in vivo testing and actual human clinical trials before anyone can claim potential efficacy. In that sense, we aren't talking about a cure for cancer yet. The data here suggests that certain isolated compounds show an effect on leukemia cells or ovarian cancer in mice, for example. Unfortunately, there's a massive pattern in science where a study shows great promise in mice but falls completely flat in humans, or performs worse than what’s already on the market, which causes investment to dry up instantly. So, my point from my previous posts remains the same. Papaya is a healthy fruit and a potent antioxidant, much like garlic, aloe, or propolis. All of these plants have shown effectiveness in petri dish studies. But claiming that a specific compound, encapsulated at a particular concentration and dose, can serve as a medical treatment for a specific type of carcinoma in a clinical setting? We just can't say that. Not yet.
Papaya isn't going to hurt you—it’s healthy, plain and simple. But claiming it can cure cancer? That feels like a bit of a stretch, if you ask me.🤷

Angela Wright, I honestly don't get why you're asking me for links if you aren't even going to bother reading them. 😢 I honestly thought you were genuinely interested in learning something new, but looking at the mountain of links I sent over, it’s clear you haven't cracked a single one. If you're hunting for clinical trials involving humans, you'll find them on the exact same sites I already shared. Like I said before, I don't have the bandwidth to hand-deliver specific URLs to you; you can certainly do your own digging. And honestly, saying Paw Paw is like papaya? That’s like saying a potato is an apple. It makes no sense. The first link I provided covers everything you need to know about that plant. Comparing it to papaya just muddies the water and confuses people—there is zero connection between the two. Furthermore, I never once claimed that Paw Paw cures cancer. I was simply sharing the experiences of people close to me who use it alongside the Budwig protocol. In my view, any positive experience worth mentioning should be passed along to those fighting cancer. With the resources I've already provided, anyone truly interested will put in the work to Google it and learn more about Paw Paw on their own.

Look, Vilko, I’m not making this up; I’m speaking within a very specific context here. If you weren't such a lightweight and actually bothered to read a single page of actual research, you’d realize that throwing baking soda, papaya, aspirin, Sutent, or whatever else at a problem doesn't make it "conventional" medicine for a hump if none of those things have undergone clinical trials for that specific purpose. By that logic, using Sutent—which is a standard FDA-approved treatment for metastatic kidney cancer—to treat a spinal deformity would be considered "alternative" medicine, simply because it hasn't been studied for that exact use yet.
And frankly, dismissing my perspective just because I haven't personally battled cancer is incredibly rude. I've gained my insight through the agony of watching my mother suffer and through my hands-on work with patients at a local cancer advocacy nonprofit. You really ought to be ashamed, having lived as long as you have, and still lacking an ounce of empathy or basic decency toward someone else's experience.

Good grief, I honestly can't deal with this anymore. 🙂
stormytinker4, this goes for you too. Before you start judging, try reading the actual studies to see what they specifically cover. 😉 Start with a basic search on *Carica papaya* and take a look at the third section: http://en.m.wikipedia.org/wiki/Paw_Paw I truly did my best to explain the process of how something moves from a theory to being accepted in mainstream American medicine. It’s a shame you chose to completely misunderstand me.

Angela Wright said:Look, Vilko, I’m not just making things up; I’m speaking in context here. If you weren't just flying by the seat of your pants and actually read the fine print, you'd see that I've been arguing for days that using baking soda, papaya, aspirin, or Sutent can't be called conventional treatment for a hump if none of those have undergone clinical trials specifically for that purpose. By that logic, using Sutent—which is a standard FDA-approved drug for metastatic kidney cancer—would be considered "alternative" medicine for treating a hump, simply because it hasn't been studied for that specific use.
And dismissing someone else's perspective just because I haven't personally battled cancer? Claiming my experience and knowledge—gained through my mother's illness and my work with a local cancer non-profit—doesn't count is just plain rude. Honestly, with all the years you've lived and everything you've seen, you should know better than to show such a total lack of empathy or tact toward others.

Good grief, I really can't deal with this anymore. 🙂
stormytinker4, this goes for you too. Maybe try reading the actual studies first to see what they specifically cover. 😉 Start with some basic research on Wikipedia—just look at the third section: http://en.m.wikipedia.org/wiki/Paw_Paw I was genuinely trying my best to explain how the process works before something gets integrated into mainstream medicine. It’s a shame you chose not to understand.

I read the studies ages ago—not those ones, but all of them! You should probably start from the basics and follow the links I provided... You spend the whole time arguing with me without having clicked a single link I sent! How can you even debate this? It's like criticizing a movie without actually watching it. And you're giving me a Wikipedia link? 😁... Is that really a relevant source? And I have no idea what you mean by section three... does it say somewhere that papaya is the same thing as paw paw? Let me try one more time to clarify: Papaya is *Carica papaya*, while Paw Paw is *Asimina triloba*. An apple is an apple, a pear is a pear. I hope you finally see the difference and realize that Paw Paw and papaya aren't even remotely similar, let alone the same plant.
You mention how you gained your expertise through your mother's suffering and helping patients, but then you dismiss everyone else's experience as mere hearsay? You don't hold a monopoly on pain, agony, or the desire to help. I went through this with my father, and I'm still going through it, just like many people here. After I provide you with actual, relevant sources—not Wikipedia!!—so you can educate yourself, you give me a Wikipedia link and insist that paw paw and papaya are identical. 😁 ...Education isn't your exclusive right; regular people like us spend our lives learning things, too. 🙂 ...Personally, I wouldn't dream of jumping into a debate about something I wasn't informed on, yet you seem perfectly fine telling everyone else how they should suffer, how they should learn, what they should read, and so on. That's the difference between us. I only join discussions when I'm reasonably well-informed. As you can see, I don't just throw advice around just because my dad had lung cancer or because I currently volunteer with cancer patients. Respect to you for everything you do and the help you provide, truly, but I'll say it again: you don't own the right to know. Other people have experience, knowledge, and a drive to help, so please, just let someone else post something that might actually help someone without snapping at them and calling it "hearsay" or "nonsense." Isn't that supposed to be the point of this forum? To help patients through advice, links, and shared experiences? I think I've said my piece. I hate that I even have to write this, but I have to, because it's not that you're wrong, but...Not even close! I'm officially checking out of this thread, but here’s a bit of friendly advice: maybe try actually reading up on the topic you're arguing about... and please, let's aim for something a little more substantial than just a quick Wikipedia skim.