Thank you, Angela Wright. I think I’m going to move him back up to 8mg of Dex; he was doing so much better at that dose. Yesterday was rough, though—he had these outbursts where he was completely disoriented, spilled yogurt all over himself, and kept pointing at things in the room that simply weren't there. Otherwise, he looks relatively healthy. He hasn't lost weight, much like Dad, but his muscle mass is definitely wasting away. In a strange way, there's some comfort in knowing he isn't fully aware of how sick he actually is.
I'm weighing the idea of seeking a second opinion regarding surgery, but honestly, I'm torn. Two specialists in Washington, D.C. turned him down, but I know there are neurosurgeons out there who pull off the impossible. I'm certain they rejected him because of his age and the tumor's location. At the end of the day, I have to ask: how much worse could surgery be? We all know what the prognosis looks like for this disease regardless.
Dad's platelet count has improved, and he just wrapped up his first month of Temodal monotherapy.
The issue is that his speech has started deteriorating again, and the oncologist suggested we scale the Decortin back down to 4mg. I'm struggling with how to interpret this—is the tumor becoming more aggressive, or could this potentially be a lingering side effect from the radiation? He isn't speaking clearly anymore; he can really only manage a handful of words, yet he understands absolutely everything I say to him. On the bright side, his appetite is good and he looks relatively well. I'm genuinely worried that if he shows up to his follow-up appointment in a month looking like this, the oncologist might decide to suspend the Temodal treatment altogether.
Now he’s also dealing with thrombosis in his right leg, and they've prescribed him Xarelto. I assume people with thrombosis aren't supposed to be getting up and walking around much? The doctors aren't giving me any straight answers; they just told me to use my own judgment.
Once again, I’ve come here looking for some common sense advice, because honestly, this is the only place where I can find it.
So, my Dad was diagnosed with GBM back in August. In September, he went to the Mayo Clinic for mapping to pinpoint the radiation site. They ran an MRI at the same time. Back then, Dad could still stand on his own two feet, talk normally, and was in really great general shape. The doctors told us they would call us soon to start radiation and chemo. A week passes, and I call them. They promise everything will happen "soon." Two weeks go by—still nothing. Meanwhile, his condition is deteriorating every single day; he can barely speak, let alone walk. Finally, after three long weeks, they call us in. Dad arrives at the hospital completely mute; he can't even lift his right arm or leg. He just sleeps constantly and suffers from this horrific, heavy coughing and trouble swallowing. I asked if they had performed a CT or an MRI upon his admission, but they told me there was no need since he had just done one during the mapping process.
Because of his declining physical state, they had to scale back the radiation and chemo, limiting him to just 15 sessions. He actually tolerated those quite well. They sent him home with a follow-up scheduled for a month later.
We had the follow-up today. A new MRI shows a slight progression, but the doctor suggested it might just be an inflammatory response from the radiation, so they aren't going to factor that in. Instead, they are approving Temodal monotherapy.
Here is what is eating at me: How can they possibly know if the tumor hasn't shrunk if they didn't take a scan when he was at his absolute worst? During those three weeks of waiting, his condition plummeted, yet their only point of reference is that initial MRI from when he was still healthy enough to walk into the hospital under his own power. It is entirely possible that the tumor grew significantly during that gap and has actually shrunk now, but I don't have anything in black and white to prove it. How would you all interpret this situation?
I'm facing a crisis right now. Basically, my Dad is currently with me in Washington, D.C., and this Wednesday he has a follow-up appointment with his oncologist to decide on the next steps for his treatment. His diagnosis is glioblastoma.
Right now, he is completely immobile. He needs to get an MRI. Since we aren't local residents here in D.C., he isn't registered in the system, which means he can't even get blood work done or schedule an MRI through the standard channels, even though he’s staying here with me. To make matters worse, Medicare won't cover transport because his current location isn't his primary residence, so they are telling us he has to go all the way to Gospić to get the MRI done. We simply cannot make the trip to Gospić because using a private medical facility would cost $1000! It feels impossible—we are expected to transport a man who is physically unable to move, suffering from such a devastating diagnosis, without shelling out THOUSANDS OF DOLLARS! It’s just not feasible; we are already struggling to cover the basic costs of his medical care, and now we're hit with this on top of everything else.
I went to some hospitals here in D.C., and they told me there’s a three-month waiting list just for an MRI. I don't understand it. He is already mid-treatment, yet everyone seems to be turning him away. Is there any way I can at least get a reimbursement if I'm forced to pay out-of-pocket for a private facility or a private consultation?
I'm not sure if I'm making sense; I'm honestly just in shock.
Ashley Reed98 said:Until the very last day, he lived "normally." He was mobile, relatively pain-free, which provides us with a small shred of comfort... It would have been so much harder if we had watched him fade away bit by bit; the fear of that was overwhelming. But he remained such an optimist, always talking about all the things he’d do once he recovered. I was aware of his diagnosis—I think we all were—but none of us expected everything to conclude this abruptly.
But the reality of his absence hurts so deeply. I miss him terribly; it feels as though there is this massive, hollow void inside me.
p.s.: Please excuse my imperfect English, I'm not originally from the US.
Time moves incredibly fast, especially when you know the days are being counted down. It is so clear how much you loved him, and that kind of love is something neither death nor time can ever strip away from you. He will live on through you, forever.
Every one of us carries our own life story, and it’s impossible to truly answer the question of "why me?" Perhaps there is a reason, perhaps there isn't. The only thing that offers me any solace in this misery is that navigating all of this has helped me grow; it has made me stronger and more resilient against the trivialities of life.
My wish for you is that you find a way to process this grief, so that eventually, this pain transforms into pride and beautiful memories. I hope you find the strength to live again, to laugh, and to find joy in the little things—and may you never forget that you were part of a truly magnificent fight.
Has anyone here had any experience with Gliadel wafers? My understanding is that they're inserted directly into the tumor site to help the chemotherapy penetrate more effectively, if I'm reading this right.
Does anyone have a good physical therapist they can recommend, and what kind of experiences have you all had with them? So, my Dad just finished up 15 days of chemo and radiation, and now he's stuck in a bit of a holding pattern for about a month before we can jump back into the next phase of treatment. His speech is starting to come back to him a little, and his right hand too. However, since he’s been bedridden and immobile for a full month now, his muscles have become incredibly weak. I honestly believe he could be walking again if a real specialist really got to work on him—do you think that's a realistic possibility?
Ashley Reed98 said:I went through exactly what you all are going through with my boyfriend. He passed away three weeks ago—brain tumor. I know this topic exists here, but I never quite had the courage to actually read it. Even with such a heavy diagnosis, I kept holding onto this tiny sliver of hope because of how bravely he faced everything; he was always such an optimist.
Now that he’s gone... I’m just taking it one day at a time, but I miss him. I miss him so incredibly much, and it feels heavier with every passing day.
My heart goes out to all of you. 🙂
Daniel Ramos12, dear, please accept my deepest condolences. 😢 Whenever you feel strong enough, it would mean a lot to us if you could share a little bit about his diagnosis and the treatments he underwent.
boldridge3 said:Mom CT scan results came back today. To put it briefly, they found four distinct lesions. Her primary care physician is suggesting they are metastases...
I am so incredibly sorry to hear that. 😢 Where was the primary tumor located?
It’s a beautiful, sunny Sunday, so I thought I’d take a moment to write a little update. 🙂
Two months ago, Dad was diagnosed with an inoperable Grade 4 Glioblastoma. After quite a long struggle and several arguments with the Mayo Clinic, he finally arrived at the hospital to begin treatment two weeks ago.
At that point, his condition was devastating. He was immobile, silent, completely disoriented, coughing, and struggling just to breathe. I honestly thought it was the end. I spent the entire night in pure agony.
Now, two weeks later, there is a visible improvement, even though the doctor told me that nothing life-altering is actually going to change. He’s eating quite a lot, he’s laughing, and every day he manages to say a new word. We’ve been practicing counting together and naming the days of the week. Little by little, he is lifting his right arm and leg—which had been paralyzed because the tumor is on the left side of his brain. He is tolerating the chemotherapy and radiation remarkably well; he isn't vomiting, he doesn't feel nauseous, and he hasn't lost his hair. His biggest struggle was accepting adult diapers; he kept pulling them off and wetting the bed. They have since inserted a catheter, which has made things much calmer for him. 🙂 It’s hard for him to deal with the loss of mobility, but I keep telling him that he will walk again—reminding him that it won't happen overnight, of course. Who knows? Perhaps I am telling him the truth, or perhaps I am unconsciously lying to him.
For me, the most important thing is seeing the smile on his face, watching how sweetly he eats a pear when I bring him one, and seeing his joy when I tell him we’ll go walking along the coast again—his favorite place in the whole world.
When the diagnosis first came, every doctor told me to prepare for the worst. Mom was already making arrangements for a black funeral service, but I told her I didn't want to hear any of it. I told her I didn't care what anyone else had to say; those aren't helpful pieces of advice, they're just people wallowing and complaining.
And when Dad was at his absolute worst—lying there silent and motionless, staring blankly at the ceiling—when the doctor told me it was over, I simply couldn't believe it. I would cry out in the hallway, but the moment I stepped into his room, I would wipe my tears away and smile like a happy child. I could feel how much that meant to him. I gave him strength.
Please, stay strong for them. It truly means everything.
Enjoy this lovely autumn Sunday. Sending strength to you all. 🙂
My dear friends, I wanted to check in and let you know that Dad remains stable. He’s picking up new words every single day now, and he has even started lifting his right arm and leg. He is handling the treatment remarkably well, though perhaps it is still a bit premature to get too carried away with excitement—we have to remember that the side effects from radiation often don't manifest until later on.
Jesse Baker79, how is your husband doing? Is there any news at all? Next week, I’m attending a lecture regarding clinical trials, and I expect they will be discussing DCVAX, which I assume you are already familiar with. Could this be our breakthrough? The trials are already quite advanced, but I am uncertain how much longer it will take before it becomes part of a standard protocol.
I have to admit, Dad is doing better. I’m going to give things a little time to settle before making any big judgments on how his recovery unfolds. He’s started moving his hands and feet again, he's eating, and he manages to squeeze out a new word almost every day. So far, he’s handling the chemo and radiation remarkably well.
How long does it typically take for the hair to fall out, and is it the same experience for everyone? Right now, he’s been prescribed three weeks of radiation because of the critical condition he was in when he was admitted to the hospital. If everything continues to go smoothly, is there a chance they might extend that treatment to six weeks?
Sarah Ramirez59 said:I am so sorry. To be completely honest, I’ve been waiting all day for you to check in just so I could see how things went. My husband handled his radiation and chemo quite well, but I had to watch a young woman—who was essentially in a semi-conscious state, much like your Dad—being driven to her radiation appointments every single day. First she was in a wheelchair, then they had to transport her on a stretcher, and I watched her decline more and more each day. That is why I reached out to you. Her mother was given the exact same advice. And that was the end of it. Is Dad doing any better than he was before the therapy started?
Thank you from the bottom of my heart for thinking of me; it’s rare to find someone who truly understands what this feels like. Most people just go about their lives, never even imagining the depth of the hole you fall into when everything collapses.
He only actually started his treatment yesterday because the machine was broken. If they had just called him on time—if they had just acted a week sooner—he would still be walking and talking. But it’s too late now, and there is no point in pointing fingers when the answer is always the same: that’s just how the system works here in the States. He might be slightly better off thanks to the Decadron and Mannitol; he’s eating well and can still manage a few words, and I can tell he understands me.
There is always that glimmer of hope that Temodar might help; for some people, it works remarkably well, sometimes even shrinking the tumor. I know it’s a long shot, and I’ve tried to stop hoping because every time I do, the doctor breaks my heart with an approach that is, painfully, very realistic. I have actually started letting go of that massive hope I used to hold onto, if only to preserve my own mental health. I don't want to remember him like this—silent and immobile. I want to remember my strong, kind father who loved people and helped everyone whenever they needed it most. But now, there is nothing left for him to give...
Even though I know exactly what state he is in, his eyes light up every single time I walk into the room. He loves it when I pamper him, feed him, and bring him his favorite fruit. And every time those eyes light up like that, my heart breaks all over again.
Regardless of everything I’ve laid out for her, the doctor is insisting that neither a new CT scan nor stereotactic radiosurgery is necessary. She claims they’ve shortened his radiation treatment to just three weeks because of his current condition, adding that he will likely never regain his speech. She very politely suggested that I should start looking into assisted living facilities for when he’s discharged, noting that providing full-time care at home would be nearly impossible given that he weighs 220 pounds. He isn't overweight; he’s just a tall, sturdy man. It feels as though she has practically written him off, and now I am left standing here completely lost on what to do next. The reality is that neither my mother nor I can manage his care on our own—how on earth are we supposed to help him get up, bathe, or move around? I feel like a total piece of trash having to force Dad into a nursing home.
Angela Wright said:He simply isn't in any condition to undergo radiation therapy right now. I would personally start a revolution and demand an immediate on-call physician if they don't want to face legal action and formal complaints. Based on what he’s experiencing and everything you’ve described, it’s clear we’re looking at neurological deficits caused by rising intracranial pressure. You need to ask them point-blank: who is going to take responsibility if Dad slips into a coma and passes away because they failed to provide the necessary emergency care for his condition? Don't be afraid to be assertive and speak from a place of knowledge. Just because his specific doctor isn't on duty doesn't mean the rest of the staff is absolved of responsibility for his stability. To maintain any improvement, he needs Mannitol IV followed by Decadron; otherwise, you risk a rebound effect from the Mannitol itself. Forget about Medrol—that shouldn't even be on the table right now. It should be pure Decadron, specifically doses of 18mg or even 24mg until he stabilizes. This is standard medical protocol, and they know it; honestly, it’s shameful that you, as a layperson, have to remind them of basic standards. He needs an urgent CT scan immediately to determine the extent of the tumor and to see how much hydrocephalus is being caused by the buildup of CSF. Once you have those results, you should be demanding a neurosurgeon to evaluate him for a potential shunt placement. If they move straight to radiation, the edema is only going to get worse. He is simply unable to begin oncological treatment! If they aren't capable of providing the necessary treatment in a timely and adequate manner, they should just be honest about it right now so we can move my father to another facility. I’m telling you, I will be sending a formal grievance to both the Chief of Staff and the Clinic Director, and I’ll make sure the Department of Health is notified as well. It is absolutely unacceptable to withhold treatment for someone suffering from cerebral edema simply because it happens to be the weekend.
Look, I apologize in advance—there’s really no better way to put this than being blunt. You have to be absolutely manic and hyper-focused about this, like a Pitbull on a mission. LITERALLY!
As of today, they’ve started him on Decadron and Mannitol. Despite that, he still isn't speaking, and he can't move his right arm or leg because the tumor is located on the left side. No, I am absolutely not going to let them proceed with radiation. I plan on calling his oncologist this Monday and then heading over to see her in person. I’m going to be pushing for stereotactic radiosurgery. I know that Dr. Mishir Krpan is an exceptionally skilled oncologist, which is exactly why some of what he's saying is leaving me completely baffled. How can he possibly claim that the patient is ready for radiation under these circumstances?! I told my sister that he needs urgent stereotactic surgery, and she just snaps back at me, acting like the doctor obviously knows exactly what he needs. Honestly, that’s the state of our healthcare system for you. They can be incredibly dismissive, making you feel like you don't even have the right to speak up or question anything—as if it isn't bad enough that they've ended up in this position because of pure negligence. And don't even get me started on the excuses; they kept telling me there were no beds available in the ward, yet two beds in Dad's room have been sitting wide open for days. It’s the same story in other rooms, too—beds just sitting empty. So much for "no availability." I have to say, I truly believe Dr. Mishir is both brilliant and deeply responsible. My sincere hope is that she’ll be realistic and straightforward when I finally get the chance to reach out to her.
Angela Wright, please, I need your help. So, my Dad hasn't even started his treatment yet because THE EQUIPMENT BROKE DOWN. I feel completely stranded—there isn't a single doctor on the ward right now, and to make matters worse, it’s the weekend. As it stands, he is in a state of constant lethargy today. He’s just sleeping; he can't talk or even sit up in bed. He managed to eat when I fed him and had some water and juice before drifting back to sleep, though they haven't given him anything specifically to help him sleep. I asked the nurse if they had administered any Decadron, but she said they are only giving him Medrol until the doctor gives further instructions. She also claimed he should start feeling better once the actual therapy begins, but I countered by asking how on earth they plan to take him for radiation in this condition. Her response? As long as he can swallow the Temodar, he’s fine. Is that really their logic?! Are they honestly saying he is fit for radiation in this state?! I am at my wits' end. I don't know what to do; waiting until Monday for the doctor arrives feels impossible. I'm losing my mind. Please, tell me, will he stay like this? He is in diapers and unable to speak, but he can understand me, and he is still eating and drinking. He still has strength in his left arm, but none in his right. Please, give me something to hold onto—just enough to get through this weekend until Monday.😢
Dear Ivanica, thank you so much, truly. Please, just tell me one thing: what happens if they tell me this isn't just edema, but that the tumor itself has progressed? I’ve been reading through threads about Glioblastoma and I understand what edema is, but I'm struggling to figure out how to distinguish whether the edema is the primary issue or if it's the tumor itself acting up? If that makes any sense.
P.s. She's currently at the Mayo Clinic in oncology; I'm heading up there after 2:00 PM to have a word with the doctor.
Dad finally starts his treatment tomorrow—chemo and radiation. The reality is that he took a massive turn for the worse literally overnight. He can't even pull on a pair of pants anymore; he’s losing his balance, struggling to speak, and mostly just swearing. I honestly don't understand how he’s supposed to handle radiation in this state. Is there any actual possibility of improvement here? Is there anything I should be holding onto hope for? It is simply impossible to believe things could spiral this quickly in just a few days. 😢
It looks like I finally managed to talk him into it, so Dad will be starting his treatment very soon. Now I’m wondering—while he’s undergoing this initial phase, I’m planning to head over to Dr. Chudy to get a second opinion. Does that seem like a reasonable sequence of events to you all? Moving from chemo and radiation toward a potential surgery? Usually, the standard protocol is surgery first, followed by chemo and then radiation...