restlessowl3 said:Has anyone dealt with side effects from Dexamethasone? My mom's muscles are hurting incredibly badly, nothing seems to touch the pain, and whenever we go to the ER, they just tell her to take a painkiller and shut up.
That isn't from the dex. You should consider if she picked up some kind of virus; everything is going around lately. Try Advil or Tylenol.
Sandra Carter50 said:Can someone please explain what Pawpaw actually is? Also, does anyone know anything about treating this with baking soda? My grandfather is currently on Matrifen and Tramal. It’s metastasized to his liver and generally throughout the abdomen. He's in massive pain. After dealing with long periods of constipation, he’s now facing constant diarrhea; he’s irritable and just struggling through intense pain. Please, if any of you have encountered this diagnosis or this specific therapy, share your experiences. Any advice at all helps because we are completely lost on which direction to take. He was diagnosed with malignant melanoma back in 2008. He’s gone through two surgeries and three rounds of chemo. His condition is deteriorating; he’s wasting away right before our eyes, flickering out like a candle. 😢 ....
Pawpaw is an exotic fruit. Just like many other "miracle" plants and supplements, there's plenty of folklore surrounding it, but usually, there are zero published before-and-after clinical findings to back it up. As for the baking soda thing, that's just the product of some sick, disgraced doctor and pure quackery. That guy Simoncini carries the weight of many dead souls on his conscience, and he's actually facing legal proceedings for it. In fact, they stripped him of his medical license in Italy. Regarding alternative medicine, that belongs in the other sub-forum. Posting it here breaks the rules.
Bryan Foster4, I am so incredibly sorry for your loss. Please accept my deepest condolences. 😢 I’m convinced the issue wasn't Edward Johnson himself, but rather a bureaucratic machine designed to be intentionally obstructive. There are these specific windows each month when the pharmacy review board meets, and more often than not, those dates have absolutely nothing to do with the urgency of a patient's condition or the reality of a hospital budget that has likely already hit its ceiling by month's end. We have world-class physicians working within a system that feels stuck in the dark ages of red tape. That is the core of the failure. I truly believe Johnson did everything humanly possible; he presented his mother's case and made the argument that she was a legitimate candidate for such an expensive medication. Unfortunately, at the end of the day, these institutions prioritize their bottom line over people.
That’s just him trying to play games with the situation. Honestly, let him be; he'll get over it. He’s still brand new to this and hasn't found his footing yet. Just tell him if he actually wants to talk, he should lay everything out on the table so you can all hammer out a deal.
restlessowl3 said:Total darkness. Even though I’m feeling pretty discouraged, that's how things went down last time. And who on earth was giving your mom the Dex? Was it her primary care doctor or someone else???
My doctor kept writing prescriptions for tablets, even though I managed to hustle at a private pharmacy to get them to sell me the vials for injections instead. I actually had a home health nurse teach me how to give shots under the table. See, those vials are technically only meant for hospital use, and they're the only way to hit the dosage required for brain tumors. My cousin swore up and down that you could just use vials bought from a big chain like CVS, but clearly, my mom was just trying to cut corners on the quality. We had to run back for new prescriptions every couple of days because she was burning through a box and a half daily. These days it's easier thanks to those standing orders, I think, but honestly, in my opinion, the injection is a much better way to go.
graniteowl23 said:Can my mom find out I went to see a doctor?
No. You're an adult, which means you have a right to medical privacy. Besides, I highly doubt your mother would even jump to the conclusion that it’s gonorrhea. What you're dealing with looks more like strep throat. Without a swab test, there's no way to pin down the exact cause. Regardless, you have a bacterial infection and you need treatment. Make sure your boyfriend gets checked out too, because if he actually has gonorrhea, he's looking at some serious complications down the road.
You’ve got plenty of reason to be worried here because this is exactly how you end up catching gonorrhea. It can settle right in your throat. You're definitely going to need a round of antibiotics. Just go see a doctor and remember that condoms aren't just for one thing—they protect your head, literally, even during oral sex!
restlessowl3 said:Here’s the deal: Mom was at the hospital from 11 yesterday until this morning. We saw Jason Radic today, and he put her back on Dexa—2x8 mg. She’s scheduled for CT radiation on the 27th. But honestly, I’m still thinking about taking those papers straight to the ribs.
neonheron32 said:I can't quite recall the doctor's name, but Dr. Radić from Mercury used to treat my grandfather when he was dealing with immune thrombocytopenia and gammaglobulinemia. She once sent him over to the hospital near Dr. Radić—I think it was his wife—because they suspected some kind of brain growth, though thankfully it turned out to be nothing. But that was five or six years ago.
I don't think we're talking about the same person. I just looked it up, and there's a hematologist named Delfa Radic Kristo, which actually lines up with what you mentioned about the thrombocytopenia. Aside from Jason, there are two other doctors named Radić at the hospital—one is a neurosurgeon, and the other is an internist at the cardiovascular institute, so that’s likely who your grandfather saw.
neonheron32 said:Isn't it Dr. Radic at the Vineyard hospital—the husband (I think) of Dr. Radic from Mercury?
I have no clue who you're talking about, but I'm referring to Dr. Jason Radic, the oncologist over at the Vineyard. I actually worked alongside her during my time with the association, and she is a genuinely wonderful person.
restlessowl3 said:She’s switched over to Tegretol starting today, but they prescribed that dose of Dexamethasone at the ER, and then the doctors at the local hospital confirmed it. Honestly, it feels like things have just spiraled out of control lately. Did she actually feel better after those ten days on Dex before things started sliding downhill again? I’m at a total loss for where to turn, especially since the hospital practically kicked us out twice. Tomorrow, I have to meet with Jason Radic at the clinic to sort out the radiation schedule.
Jason Radic is a solid doctor. Just tell her you’ve been looking into it and heard from several sources that Methylprednisolone isn't really the best move for brain tumors. Ask her specifically for the Dex instead—mention how much better Mom responded to it. I’m willing to bet she’ll write the prescription if you push for it.
restlessowl3 said:She had 4 mg of Dex, which she took for a month, but since yesterday she’s been on Methylprednisolone—two 32 mg tablets. They aren't going to operate because the tumor is massive, and now there's swelling and a tumor cyst. What's killing me is that her condition hasn't improved at all despite the Dex. There's nothing she can do herself; her left arm and leg are completely non-functional.
I actually looked into getting Methylprednisolone for my own mother because it seemed easier to manage the pill count than dealing with Dex, but her oncologist made it very clear that Methylprednisolone isn't an adequate anti-edema therapy for brain tumors—and I verified that with two other medical professionals. As for that 4 mg dose of Dex you mentioned, when the overall situation is already unstable, that dose is just way too low. If I were in your shoes, I’d be asking serious questions about that anti-edema treatment and seeking a second opinion. Do it immediately, because if that edema spirals out of control, it becomes a nightmare to manage! Also, she absolutely has to take Pepcid or Ranitidine for her stomach, otherwise those steroids will tear her stomach lining apart. Is she taking any anti-epileptics?
Karen Sanchez19 said:If there were a restroom nearby, he could probably limp his way there on crutches, provided he had the strength.
They have portable commodes, so he’s stuck handling business right there in the room.🙄
It strikes me as odd. Why wouldn't someone dealing with a fracture head to a specialized recovery center or a spa-style hospital? Does the Suburban Springfield facility even have a rehab wing? You know, for the physical therapy clinic sessions and the specific exercises required to fix a break like that.
Why wasn't this brought up before the move was finalized? It usually works like this: they probably asked if anyone could take care of him at home, he said no, and that's that. Simple as that.
Look, Springfield is a facility for long-term recovery, not some hospice where people go to die. Because we lack dedicated palliative care centers, things just end up falling into this pattern by default. In reality, the uncle is actually in the right spot. Given that he clearly can't manage on his own at home right now, being at Springfield is more practical than heading to a resort, and he can get all the necessary rehab right there.
As for any other issues regarding the bathroom or whatever else, he needs to speak up and be assertive about what he needs.
restlessowl3 said:We saw Dr. Darkness, but that was before they installed the new MRI machine. As soon as he realized Mom was in such bad shape, he told us the real question isn't just about the surgery itself, but whether she can even handle it. Honestly, his bedside manner was a total disaster compared to last year. So, I’m going to stick to what Mom wants and follow the advice of the surgeon who actually performed her two previous operations at Mount Sinai. But thanks for the input anyway. 😘
It's likely the edema causing the issue. What's her daily dosage of dexamethasone? If the swelling is the only thing standing in the way of surgery, then aggressive anti-edema therapy should be able to stabilize her and get her physical condition back to a manageable level. Besides, with people dealing with brain tumors, those intense Southern heatwaves can literally push them into a pre-comatose state because of the massive blood pressure swings. I remember my own mother so clearly—we could practically sense a weather shift coming just by looking at how she was doing. Back then, we'd preemptively bump her dex dose up by maybe 2 mg just to help her ride out those rough patches more easily.
restlessowl3 said:Oligodendroglioma, grade 2... Non-surgical, radiation recommended. Anyone have experience with this?
We’re looking at a slow-growing brain tumor here, but the catch is it can eventually morph into an anaplastic type that grows much faster. It’s a real shame it isn't operable, but at this stage, radiation and chemo are pretty much the gold standard options left on the table. If I were in your shoes, I’d push for a second opinion from a top-tier neurosurgeon, maybe someone over at Mayo Clinic. Because honestly, if Paladino says surgery isn't an option, then you've likely hit a dead end.
Just one more small detail, though it carries a lot of weight for me. This second part of the thread was started yesterday—the very day my mother would have been celebrating her 63rd birthday, if she were still with us.
The mods asked me to kick off this second part because the original thread hit the 10,000-post ceiling—that's the admin limit before a thread gets locked down. Everything from the old thread is still here and readable; we’re just moving the conversation over here to keep the momentum going.
Here are the links to the first and last pages of the previous thread.
I want to take a quick moment to look back at where we started.
When I first pulled this together, I was in a truly dark place. I wasn't looking for answers so much as I was just drowning in my own desperation. I held onto this idea that if you put good energy out into the universe, God will return it tenfold, and I was praying He would pull me through my situation. And honestly? He did. This thread has brought a lot of good things into my life personally. Sure, some of those "big wins" ended up being massive disappointments, but I never wanted to stop writing here. It’s become a ritual for me. I still believe that helping others is a way to invite divine help for myself, but more importantly, this has become my way of finding some kind of higher purpose in all the chaos my mother and I had to endure together.
501 pages, 10,014 posts, and 1,338,026 views. Those aren't just statistics; they represent a mountain of grief, agony, and despair, but also a massive amount of insight, comfort, and healing. When I started this, I had no clue these numbers would grow like this, nor did I realize how many fundamentally devastating life struggles were hidden behind them. After seven years on this thread, I’ve gained an incredible amount of experience and wisdom. One thing I've learned is that if we don't pass our knowledge along—regardless of whether our own stories end in success or failure—we won't see any real progress. These numbers will just keep climbing because the world is getting older and more fragile by the day. With that in mind, I’m asking everyone who posts: please come back once you've navigated your own crisis and help someone else navigate theirs. You don't have to be a fanatic like me, but think of it as a tribute—a way to honor the suffering of your loved ones or your own struggle. For those who lost their battles, it honors their souls; for those who made it through, let it be an act of gratitude. Personally, it gives me an incredibly powerful sense of fulfillment that I’d recommend to anyone. 😉
Sofa l, if you ask me, surgery would be the least of his worries. He’s older, sure, but if he can pull through—and I don't see why he couldn't if his heart is in good shape—he honestly has the best shot at extending a high-quality life in remission, God willing. Age is always a risk factor, but let's be real: there are 78-year-olds out there who are far more robust and full of life than some 50-year-old living a high-stress lifestyle.
mistyjackal842, you’ve mentioned which hospital it was several times already—you’re allowed to do that. But they’ve told you to stop looping like a broken record across different threads, and if you ask me, it’s for the exact reasons I pointed out to you in a previous discussion. We’re talking about a major medical center that draws massive crowds, and people are starting to develop a real sense of dread and resentment toward it. Every hospital has its issues, and when staff members mess up, they should be reported through the proper channels. It’s just not right to go after the mods; they’re actually doing their jobs correctly here. I get why you're so bitter about what happened—it's totally understandable—but don't let that anger cloud your judgment. Unlike an online forum where you can say whatever you want, if this goes to a US court, your attitude could seriously tank your chances of getting the outcome you want. Hang in there!
Ashley Smith54 said:Thanks for the support and the advice. My mother passed away this past Monday... wishing all the other families going through something similar nothing but the best and plenty of strength..
Please accept my deepest condolences.😢 I hope you can find closure and move forward with peace in your heart. Stay strong.