If anyone here has experience working with Prof. Rotim, please shoot me a private message. I know he’s an absolute top-tier expert, but we're dealing with something else entirely here. Hang in there, everyone. My heart goes out to you—I know exactly how heavy this feels, as my own mom is currently fighting a brain tumor.
Can someone help me make sense of this brain CT scan? On the right parietal side, there's a hypodense, mostly fluid collection measuring about 64 x 62 mm on the transverse slices. It’s pressing against the lateral and third ventricles, causing a midline shift to the left of about 12 mm. Because of that, the right lateral ventricle's occipital and temporal horns look a bit wider, and the right basal cistern is narrowed due to some mild uncal herniation. The sulci on the right frontoparietal side are also effaced. There aren't any signs of recent ischemia, acute hemorrhage, or extra-axial collections.
We’ve finally started radiation; today was just the seventh session out of fifteen. Honestly, things seem to be heading downhill. My joints are still killing me, and now my head is acting up again. The hospital isn't exactly opening its doors to us right now, and I’m feeling completely lost on what to do next. She’s stopped eating much—just the bare minimum to get by. I feel totally overwhelmed. We were actually laughing about how long we had to wait for this treatment to start, but fast forward a week, and everything has spiraled into a disaster. What am I even supposed to expect from here?
Just wanted to give an update—we started radiation today. They’ve recommended 15 sessions. We also dropped the dex dose down to 8, which she'll take once the radiation is finished. We'll see how things play out from here, but I'll most likely be looking into taking her abroad for treatment after this stretch is over.
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.
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.
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.
Angela Wright said:That’s not from the Dex. Watch out, she might have picked up some virus; everything is going around lately. Try Ibuprofen or Tylenol.
It is from the Dex. Even though it’s supposed to be anti-inflammatory, it isn't working that way for her. When she was on Methylprednisolone, her muscles didn't ache like this. We've tried both Ibuprofen and Tylenol, but once the pain starts, it just doesn't let up for hours. She’s also incredibly swollen—I mean, she’s basically holding a ton of water. Is there any chance her primary care doctor would prescribe morphine patches or maybe some pills to help with the fluid retention, considering her diagnosis?
Has anyone here dealt with the side effects from Dexamethasone? My mom is dealing with these intense muscle aches that just won't quit, and nothing seems to touch the pain. Every time we head to the ER, they just hand her a painkiller and tell her to suck it up.
Angela Wright said:My doctor actually wrote out prescriptions for pills, even though I managed to work things out at a local private pharmacy to get the injectable vials instead. A visiting nurse—off the books, of course—taught me how to administer the shots myself. Technically, those injections are only meant to be handled in a hospital setting, but 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 place like Walgreens, but it seemed like my mom was just trying to cut corners with hers. We had to run back for new prescriptions every couple of days because she was going through a box and a half daily. It’s a bit easier now with those standing orders, I think, but honestly, the injections feel like a much better option.
They taught me how to give the shots too, since the visiting nurse isn't officially allowed to. Even though we get all the equipment and the vials directly from the doctor, she actually managed to coordinate with some home health agency to have people come by and handle the injections. You can actually set that up through Medicare.
Angela Wright said:Whose doctor? Jason Radic is a solid oncologist.
Under the darkness. Though honestly, I’m pretty disappointed by how things went down last time. And who exactly was giving your mom the Dexa? Her GP or someone else???
loneraven153 said:I need a brain MRI using an MS protocol. Can anyone recommend a good clinic? Maybe one of these places—Nemetov, Medikol, or maybe some local diagnostic center?
Here’s the situation: Mom was at the hospital from 11 yesterday until this morning. We saw Dr. Radic today, and they put her back on Dex—2x8 mg. She’s scheduled to start radiation on CT on the 27th. Still, I’m planning on heading over to the clinic to get everything sorted with the paperwork in person.
Angela Wright said:I was actually looking into getting Methylprednisolone for my mom because it seemed easier to give her the pill form rather than dealing with Dex, but her oncologist explained that Methylprednisolone isn't an adequate anti-edema therapy for brain tumors. I even double-checked that with two other specialists. As for that 4 mg dose of Dex, honestly, things look shaky—that dose seems way too low. If I were you, I’d really dig into those anti-edema options and get a second opinion. Do it as soon as possible, because if that edema starts spiraling out of control, it’s going to be incredibly hard to manage! Also, she absolutely needs to be taking Pepcid or Ranitidine for her stomach, because steroids will wreck it. Is she on any anti-epileptics?
She started Tegretol today. That Dex dose was prescribed at the emergency room at St. Jude's and then confirmed over at Mercy Hospital. Though, if you ask me, it feels like things were already starting to spiral. Was she doing okay after ten days on Dex before she took a turn for the worse again? I’m feeling a bit lost, honestly; they practically kicked me out of Mercy twice. Tomorrow, I have to meet with Dr. Radic at the medical center to finalize the radiation schedule.
Angela Wright said:It’s likely the edema causing the issue. How much Dexa is she on daily? If the swelling is the only thing holding them back from surgery, some solid anti-edema therapy should stabilize her enough to get her in better shape overall. Honestly, with those intense Southern heatwaves, patients with brain tumors can drift into a pre-comatose state just from the pressure shifts. I remember my own mom clearly; we could tell when the weather was about to turn based on how she felt. Back then, we’d proactively bump her Dexa up by maybe 2 mg just to help her weather the change.
She’s on 4 mg of Dexa. She had that for a month, but since yesterday, they switched her to Medrol—two 32 mg tablets. They won't operate because the tumor is massive, plus she’s dealing with diarrhea and now there's a tumor cyst involved. What really eats at me is that despite all the Dexa, her condition hasn't actually improved. There isn't anything I can do for her; her left arm and leg aren't working at all.
Angela Wright said:It’s a slow-growing brain tumor, but it can eventually progress into an anaplastic type that spreads much faster. It’s a shame surgery isn't an option right now, but radiation and chemo are really the best bets here. If I were in your shoes, I’d try to get a second opinion from a neurosurgeon over at Mayo Clinic. If Paladino says it won't work, then it probably won't.
We saw Dr. Darkness, but that was before they installed the new MRI machine. As soon as he realized how bad Mom's condition was, he basically said the whole thing comes down to whether she's even a candidate for surgery. Honestly, his bedside manner was a total disaster compared to last year. So, I’m going to respect her wishes and stick with the doctor who successfully operated on her twice back at Mount Sinai. But thanks for the input. 😘
Grade 2 Oligoastrocytoma... Doctors say surgery isn't an option here, so they're recommending radiation instead. Does anyone have any experience with this?
driftingsurfer14 said:It’s not necessarily terrible; it really just depends on how the patient is holding up. If he's dealing with a lot of pain, I honestly think being in the hospital would be the better move.
We'll just have to wait and see after the MRI. Maybe they'll feel bad for him and let him stay... So, what exactly is your dad fighting right now?