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

Grace Ross20 said:Dear Ivanica, thank you so much, truly.
Please, just tell me—what if they tell me this isn't just edema, but that the tumor itself has progressed? I've been reading threads about Glioblastoma and I understand what edema is, but I don't know how to tell if the edema is the issue or the actual tumor itself? If that makes any sense.

P.S. He's currently in oncology at the Mayo Clinic; I'm heading up there after 2:00 PM to talk to the doctor.

Tell them to show you the MRI so they can prove it's nothing more than that. 😉
With edema, it’s a rule: it happens because of the tumor. It doesn't just appear out of thin air. They started radiation, which caused the edema to swell up. They'll likely give him Mannitol and Decadron for sure. And demand a new CT scan at the very least. With a tumor this invasive, progression is inevitable, and the edema growth is just a matter of scale. Regardless, they're going to need imaging; heaven forbid they end up needing a lumbar puncture.
Just so you aren't caught off guard, some patients have a shunt installed—basically a little tube used to drain CSF into the stomach. And that stays in permanently.
Insist on speaking with both the neurologist and the neurosurgeon. This oncologist can't handle this alone right now.

Hey everyone!!
Here’s my situation: 1. Stomach cancer (treated for now)
2. Monitoring for potential malignancy (code Z 3.16)
3. Menetrier disease (a fallout from the cancer, though the disease itself is a breeding ground for more cancer)

Since the doctors are bracing for the cancer to come back, I'm on constant watch. But honestly? The pain is unbearable. Right now, I'm relying on Fentanyl patches and Luminal, but the meds barely touch it—the patch only lasts me maybe a day and a half, tops. And the bleeding? It's everywhere, both ends (vomiting and stool), while my doctor just shrugs and says it's "normal" because my stomach is "clearing itself out." My cardia is open, and my esophagus and stomach aren't doing their jobs at all—my duodenum is basically shot. The doctors aren't prescribing anything specific for the actual diagnoses; the only thing I have is the Fentanyl patch prescribed by the specialist at the Mayo Clinic pain clinic.
Like I said, I am living in agony because this treatment DOES NOT WORK.
To top it all off, my last MRI showed a 6x3 cm cyst in my brain behind my left temple, plus two cysts on my liver... everything is going downhill fast, not to mention the depression hitting me hard...

Does anyone have any advice?

Emily Grant said:Hi everyone!!
My diagnosis is 1. Stage 1 gastric cancer (currently resolved)
2. Observation for malignancy (code Z 3.16)
3. Menetrier disease (a consequence of the cancer, and the disease itself acts as an active precursor for more tumors)

Since the doctors expect the cancer to return, I'm under constant monitoring. I am in unbearable pain, so for my therapy, I'm using Fentanyl patches and Luminal, but the medication wears off incredibly fast—the patch only lasts about a day and a half to two days... I'm bleeding from both ends (stool and vomiting), while my doctor insists this is "normal" because my stomach is just "clearing itself out." My cardia, esophagus, and stomach aren't functioning properly, and my duodenum is basically non-existent. The doctors aren't prescribing any specific treatment for my diagnoses; the only thing they've done is have a specialist at the Mayo Clinic pain clinic prescribe Fentanyl patches.
Like I said, I'm living in agony because the therapy DOES NOT HELP me.
On my last MRI, they also found a 6x3 cm cyst in my brain behind the left temple, plus two cysts on my liver... everything is going great, if you consider this "great," not to mention the depression...

Does anyone have any advice?

Pack your bags and head straight to a major medical center for a second opinion.
Around here, expertise is just limited—whether it's by the lack of qualified staff, the available diagnostic tools, or simply a lack of willpower to take a multidisciplinary approach and offer the best possible treatment for your condition.
And it's total nonsense that you're supposed to just endure the pain, because you shouldn't have to. An anesthesiologist needs to get to work on a cocktail of medications and titration to find the right dose that covers your entire spectrum of pain.
I recommend seeing Dr. Potter at the Draskovic clinic in the pain management department.

Super... thanks so much for the help and the advice. I'm getting out of Dubrava Hospital as fast as I can. Honestly, everyone there acts like they're some kind of geniuses, but when you go in for checkups, they just copy and paste the previous findings like robots! It's ridiculous. Menetrier is incurable for now, and as far as I know, they haven't even set up the specific billing code for it at MBK yet. Only about 36 people in the entire country are dealing with Menetrier disease right now.
Thanks again!

Emily Grant said:Awesome... thanks so much for the help and advice... I’m going to get out of there ASAP because everyone at Dubrava Hospital acts like they know everything, and during checkups, they just copy and paste findings from the previous report... Menetrier is incurable for now, and as far as I know, there isn't even a specific code for it in the Medicare system yet. In all of America, only about 36 people are suffering from Menetrier disease...
thanks again!

Do yourself a favor and Google specialized referral centers and clinical trials for this condition. If a study exists, getting into one should be relatively straightforward because the patient pool is so small—and for a study to actually be credible, they need a significant number of patients for testing. These trials are free for you; usually, you only cover your own lodging, but even that can often be worked out with the pharma company if they really want you on board. Plus, if the drug turns out to be working for you, you'll receive it from them for free for life, regardless of how the actual study ends up.
Here is the link to start searching. https://clinicaltrials.gov
If anything is available, it will show up in the published listings. You can filter by whether they are still recruiting, and there’s even a world map with highlighted countries where studies are active. Clicking on those will give you the contact info and the requirements.
If you haven't already, reach out to the American Rare Disease Association to see if they can connect you with others facing the same diagnosis.

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.😢

My Dad went under the knife on Monday. He’s still stuck in the ICU. Sometimes the news is better, sometimes it's worse—honestly, right now, it feels like a daily battle. They have him on pills for circulation because his blood pressure is bottoming out. The anesthesiologist basically admitted they messed up with the chemo; apparently, they shouldn't have pushed for two different protocols when it was obvious neither was doing anything. The chemo trashed his heart and vessels, and that’s what's stalling his recovery.
It’s the third day and they finally started feeding him, which felt like a win. But at this point, nobody can give us any certain answers...

Grace Ross20 said:Angela, please, I need help.
So, my Dad hasn't even started therapy yet because the EQUIPMENT BROKE DOWN. I have nobody to talk to because there isn't a single doctor on the floor right now, and it's the weekend too.
Basically, he's in a coma today—like, a total coma. He just sleeps; he can't talk or even get out of bed. He ate when I fed him and drank some water and juice, then went straight back to sleep, and they haven't given him anything to help him rest.
I asked the nurse if they gave him any Decadron, but they said they only give Medrol unless the doctor says otherwise. They also told me he should be better once therapy starts, but I asked how they plan to take him for radiation in this state, and the answer was just that he's fine as long as he can swallow the Temodar. Is that really okay with them?! He’s in this condition, and they think he's ready for radiation?!
I don't know what to do anymore. Waiting until Monday for the doctor is going to drive me insane.
Please, tell me, will he stay like this? He's in diapers and can't speak, but he understands me, and he's eating and drinking. He still has strength in his left arm, but nothing in his right.
Please, just give me something to hold onto so I can make it through the weekend. 😢

I'll try to weigh in... and Angela, feel free to correct me if I'm wrong when you get online.
He's sleeping because the edema—the swelling around the tumor—has gone crazy. If you haven't already, ask for the doctor on call and find out if he's getting Mannitol (to bring that swelling down) and why they aren't giving him Decadron intravenously.
They can transport him to radiation in his bed, but it won't necessarily make things better. In fact, it could make it worse, because radiation can actually cause the edema to flare up even more.

Grace Ross20 said:Angela Wright, please, I need your help.
So, my Dad hasn't even started his therapy yet because the equipment broke down. I'm stuck here with nobody to talk to since there isn't a single doctor on the floor right now, and of course, it’s the weekend.
So, he’s basically in a coma today—just totally out of it. He’s sleeping constantly, unable to talk or even sit up in bed. He managed to eat a bit when I fed him and had some water and juice, then just drifted right back into sleep. They haven't given him anything specifically to knock him out, either.
I asked my sister if they were giving him any Decadron, but she told me they’re sticking strictly to Medrol until the doctor gives the green light to change things up. She also claims he should start feeling better once the actual therapy kicks in. I had to stop her right there—how on earth are they planning to get him to radiation sessions when he’s in this condition? Their answer? As long as he can still swallow his Temodar, he's fine. Is that their logic?! They honestly think he’s in any kind of shape to undergo radiation right now?!
I honestly don't know what else to do at this point. I'm sitting here wondering who is actually going to be around to wait for Monday and see the doctor, because if I have to deal with this uncertainty any longer, I am going to lose my mind.
Please tell me, is this going to be his permanent reality? He’s in diapers now and can't speak, though he can still understand me and is able to eat and drink. He’s got some strength left in his left hand, but the right one is completely useless.
Give me something to hold onto—just enough to keep me afloat until Monday so I can actually make it through the weekend. 😢

He just isn't in any condition to handle radiation right now.
I’d start a full-blown revolution and demand an immediate on-call physician, unless they want to deal with formal legal complaints.
Look, the edema and everything you’ve described point directly to neurological deficits caused by rising intracranial pressure. You need to ask them exactly who is going to be held accountable if Dad slips into a coma and dies because they failed to provide the basic first aid his condition requires. Be assertive. Walk in there acting like you know exactly what's happening. Just because his specific doctors aren't on shift doesn't mean the rest of the staff is suddenly absolved of responsibility for his care. The standard protocol here should be IV Mannitol followed by Decadron to maintain any improvement, especially since Mannitol can cause a rebound effect. Forget about Medrol—that’s out of the question. He needs pure Decadron, specifically doses of 18mg or 24mg until he stabilizes. This is standard medical practice; they know this, and frankly, it’s a disgrace that you, as a layperson, have to remind them. He needs an urgent CT scan immediately to determine the extent of the tumor versus the hydrocephalus caused by CSF buildup. Once you have those results, use them to demand a neurosurgeon to discuss potentially installing a shunt. If they go straight to radiation, that edema is only going to spiral out of control.
HE CAN'T EVEN START CANCER TREATMENT!
If they aren't capable of providing the necessary therapy in a timely manner, they need to just own up to it right now and admit they can't handle him—then move my father to another facility immediately. I’m going to send a formal complaint straight to the department head, the clinic director, and the Department of Health to let them know exactly how they are (not) treating a patient suffering from brain edema just because it happens to be the weekend.

Look, there’s no better way to put it, so forgive me in advance—you need to be absolutely manic and wired, like a Pitbull on speed. LITERALLY!

Greetings to everyone. I posted here about three months ago when my mom was first diagnosed with small cell lung cancer. Initially, her doctor refused any kind of treatment because she was just too incredibly weak. However, once they confirmed it was small cell (which typically responds quite well to chemo), the doctor suggested we try chemotherapy anyway, reasoning that without intervention, her timeline would be tragically short regardless. Mom decided to take that gamble. Miraculously, she managed to survive six cycles of chemo. To my absolute surprise, the only side effect she really faced was hair loss; she didn't suffer from any nausea at all. In fact, she actually gained weight through the cycles, finally returning to a normal weight. It honestly feels as though the symptoms of the cancer itself were more debilitating than the treatment. For two months, she was dependent on diapers and spent nearly all her time in the hospital hooked up to oxygen and IV drips—it was truly horrific. After finishing the cycles, the doctor decided to give her a break for about three or four months, during which she comes in for monthly checkups to see how things progress. Three days ago, she had her second follow-up, which showed regression. Throughout the entire course of treatment, the tumor has shrunk by about 80%. But there is one specific development in this whole situation that is weighing heavily on my mind. About two weeks ago, Mom started losing sensation in her left arm, specifically from the elbow down to her fingers, though she isn't experiencing any pain. She can still function normally—washing dishes, gardening, weeding—and nothing slips from her grip, so this loss of feeling makes no sense to me. During the first cycle of chemo, the medication leaked from her arm because the IV wasn't placed properly; since she had fallen asleep during the infusion, she didn't notice anything until the nurses woke her up. Her doctor attributes this numbness to that chemical leak, yet he is sending her for a brain scan just to be safe. Once the imaging is done, we will know what we are dealing with. I am sincerely praying that it isn't anything serious...

I honestly think we’re looking at nerve damage caused by the chemo. Brain metastases don't typically show up like this; they would have paralyzed an entire side of her body rather than just causing localized issues.
It’s going to be okay.

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.

Grace Ross20 said:Starting today, they’ve put him on Decadron and Mannitol, but he’s still non-verbal and can’t move his right arm or leg because the tumor is on the left side.
Look, I am absolutely not letting them start radiation. I’m calling his oncologist personally on Monday and then heading straight to her office. I’m going to push for stereotactic radiosurgery. I know Mishir Krpan is an incredibly talented oncologist, which is why some of what she's saying makes zero sense to me—how can she possibly claim he’s ready for radiation right now?!
I told the nurse he urgently needs stereotaxy, and she just snaps back at me, implying the doctor knows best. So much for our healthcare system. They are incredibly rude and act like I don't have the right to say a single word, as if the state he's in isn't already bad enough due to their negligence. And don't even get me started on the "lack of beds" excuse; they kept telling me the ward was full, yet two beds in my Dad's room have been sitting empty for days. Not to mention other rooms where beds are just sitting there vacant. So much for the bed shortage.
I’ll say this: I know Dr. Mishir is brilliant and responsible, and I’m hoping she’ll be realistic when I finally get a hold of her.

You should have pointed out that she clearly doesn't know, because if she did, they would have repeated the CT scan immediately upon admission.
You have to snap back at every bit of nonsense they throw at you. You don't have any other choice.
You have to stay one step ahead of them, ALWAYS.
Demand a new CT. If this swelling is caused by fluid buildup, he needs either a one-time drainage or a shunt if the Mannitol and Decadron don't stabilize him. Radiation is going to cause constant edema, and if the Decadron can't keep it under control, all their efforts will be for nothing. If things don't improve with the current meds by Monday, you have a rock-solid argument for a CT. Ask them why it hasn't been done, whether they are considering it, and when the neurosurgeon will weigh in on the need for a puncture or a shunt... basically, play dumb. Act surprised and indignant, as if they hadn't already mentioned those options to you. 😉
Demand decisive answers to every single question you ask. You have that right, so act like it. Be assertive with the doctors, and if the nurses are being disrespectful, be just as blunt with them. They are here to care for patients, so they need to act professionally, and that includes basic decency.
By the way, being annoying and difficult works best. Be a nuisance and, when necessary, be difficult.

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.

Grace Ross20 said:No matter how much I argue, the doctor insists he doesn't need another CT or stereotactic surgery. She says they shortened his radiation to three weeks because of his current condition, and that he’ll likely never regain his speech.
She also gave me this "gentle" warning to start looking into assisted living facilities for when he's discharged, because apparently, nobody is going to be able to handle him at home since he weighs 220 pounds. He isn't fat; he's just a tall, strong guy.
It feels like she’s basically written him off, and now I'm just lost.
The truth is, my mom and I can't manage him on our own. How are we supposed to help him get up or even bathe him?
I feel like a total piece of trash for having to push Dad into a care facility.

I am so sorry.
Honestly, I've been waiting all day for you to check in so I could see how things went.
My husband handled his radiation and chemo pretty well, but I spent every single day watching this girl—who was practically semi-conscious, kind of like your dad—getting driven to her radiation sessions. First in a wheelchair, then on a gurney, just watching her get worse every day. That's why I reached out to you.
Her mom was given the exact same advice. And honestly, that was it.
Is Dad feeling any better after the therapy he received?

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.

Honestly, so much! For you, and for everyone else out there fighting this alongside their families.
Just take it one day at a time. That’s really the best advice I follow myself. You have to let yourself appreciate the tiny wins, like seeing that spark of joy in his eyes when he sees you 🙂
Or even just the fact that he can squeeze out a few words. It might fluctuate, kind of like what my husband goes through. There have been times where he can't get anything out—just random syllables that don't mean a thing—and then suddenly, things improve. Then they dip again. It’s a roller coaster.

See, my biggest fear is actually forgetting who he was before all of this started. When you were talking about your Dad, it felt like you were describing my husband.

Terry Lopez18, try coming back and asking her for straight answers. You know how this works—you've seen it through your conversations with other doctors and by watching what other GBM patients go through. Be blunt with her: tell her you fully grasp how heavy this diagnosis is, but you won't sit by while she refuses to engage with a patient who still has a legitimate right to fight for more quality time.
Don't be afraid to use my own story as an example. I spent my days sprinting through the neurosurgery department at the Mayo Clinic, begging Paladin to perform a puncture while my mother lay there completely incapacitated after a repeated CT. He did it, and that one decision gave my mom the chance to undergo oncology treatment. It bought her another year and a half of life—time where she was able to experience some truly important milestones, allowing her to leave this world on much happier terms. Ask her nicely not to strip that opportunity away. As for palliative care, tell her not to sweat that part; she should be focusing on the curative side, which hasn't been exhausted yet. At the end of the day, anti-cancer treatment is primarily about extending quality of life, and then we hope for remission. Remind her that you are in a much tougher spot than she is. You can't exactly run around seeking second opinions for Dad when he's in this state, especially since they refuse to order a new MRI or CT. She’s already voiced her opinion, but she isn't basing it on actual findings—it feels more like medical guesswork. That’s just not acceptable. Please ask her to respect your position and Dad's rights as a patient to get a second opinion from a neurologist and a neurosurgeon before settling on whatever the oncologist suggests.

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?

Grace Ross20 said:Look, I have to admit, Dad is doing better. I’m going to give it some time to see how his recovery actually 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. Plus, he’s handling the chemo and radiation pretty well so far.

How long does it usually take for the hair to fall out, and does it happen to everyone?
Right now, he's prescribed three weeks of radiation because of how critical his condition was when he was admitted to the hospital. Is there any chance they might extend that to six weeks if everything goes smoothly?

I’m not sure which specific protocol they are following, but when my mom was going through treatment, the standard was 30 days of radiation paired with Temodar, which you take an hour before the radiation sessions. You still take it on the off-days when there isn't any radiation scheduled. After that, they do a follow-up MRI to check for a response to the therapy, and then she moved on to five more cycles of Temodar.
Treatment gets paused or pushed back if the patient's general condition tanks or if their blood counts look bad.
As for the hair, my mom started losing hers right after her very first dose of Temodar. Once those first few strands started coming out, I just shaved her head and we went with a wig.
It’s possible Dad might get some radiation burns on his scalp. You shouldn't put anything on them except Gentian Violet. Just wash the area with plain, lukewarm water.