Support resources for families dealing with cancer and other serious illnesses

slyowl10 said:My dad has a pancreatic tumor, and he's doing really poorly. He’s starting to get disoriented and doesn't realize where he is.
He keeps saying he wants to go home, but he *is* home. He hasn't eaten anything for days; he just lies there. Is it possible the metastases spread to his brain? He doesn't have headaches, just pain in his stomach area, and he's incredibly depressed.
How can I make him more comfortable? It's terrifying even typing this out, let alone imagining what he's going through.

My dad has colon cancer, and he's dealing with the exact same thing—stomach pain, depression, zero appetite, and vomiting everything he tries to swallow, including meds. He just lies there all day, barely talks, mostly just sleeps. 😢 At the start of treatment, they found some growths on his brain, one about 8mm and another 1cm, which they're treating as metastases. This started after his left side went numb and he began losing consciousness. He actually thought he was having a stroke, which made him super anxious and stressed. The doctors didn't dig too deep into it because, in their minds, when you have cancer, any irregularity is automatically flagged as a metastasis. But honestly, his mind is totally sharp—he’s thinking completely normally and hasn't had any cognitive changes at all.
So yeah, we are in the exact same boat.
I'm honestly at a loss on how to help him either. I'm right there by his side all day, trying to talk to him, but he just shuts down and wants to sleep. Mentally, he's just completely wiped out. We headed to the hospital today because he was crashing—hasn't eaten since Sunday and things were getting worse. The doctors gave him this kind of nutritional supplement, a liquid packed with minerals, vitamins, glucose, and stuff, specifically for chemo patients who can't keep food down. You just take it in small sips whenever you can. Since we got back from the hospital around 1 PM, he's sipped it a few times and hasn't thrown up, so I'd definitely recommend giving that a shot.🙂

Susan Hayes25 said:Basically, my mom is currently on 16 mg of dexamethasone. She told me they’d be tapering her down gradually, prescribing a step down to 13 mg. Fine. But apparently, this reduction starts today.
Temozolomide starts tomorrow, and on top of that, she wrote down dexamethasone at 4 doses of two 0.5 tablets each—which means a total of 4 mg per day!!!!!!!
It's the same old story with this doctor; I only see these surprises after I've already left her office and finally have some peace to read the actual orders. I cannot believe she intends to drop the dex from 13 mg to 4 mg in a single day while simultaneously starting Temozolomide. It's absolutely horrific. Does she have any idea how severe the reaction could be?

During my own six cycles of chemotherapy, I was taking 4 mg of dexamethasone daily, which worked out to 8 tablets.

Susan Hayes25 said:Angela Wright, please help,
I was just at my mom's follow-up appointment with her doctor yesterday, and it's time to start her second cycle of Temozolomide.
The scariest part is seeing how terrified she is. I practically begged her to just prescribe the start of the second cycle, but she came up with a hundred excuses as to why she wouldn't—it’s clearly just easier for her to give up. But how can we just quit? And how can she judge the effectiveness of Temozolomide based on just one completed cycle?
Anyway, Mom is currently on 16 mg of dexamethasone, and the doctor tells me we're going to taper it down gradually, prescribing a drop to 13 mg. Fine. But this reduction starts today.
The Temozolomide starts tomorrow, and on top of that, she wrote for dexamethasone 4 tablets of 0.5 mg four times a day, which means a total of 4 mg daily!!!!!!!
It's the same old story—surprises from this doctor that I only catch after I've left her office and finally have some peace to read the paperwork. I cannot believe she wants to slash the dex from 13 mg to 4 mg in a single day while starting Temozolomide. It’s horrific. It’s like she has no clue what kind of reaction that's going to trigger. To make matters worse, she threatened me about potential bleeding caused by corticosteroids and lectured me on how harmful they are. Look, all drugs have side effects; we don't exactly have a luxury of choice here. I'm terrified that if I drop the dose like this, it’ll be a total catastrophe, but the doctor couldn't care less. She's just scared.
What should I do? I feel terrible. The Temozolomide is supposed to start tomorrow, and I have everything else ready. Plus, it's the weekend, so I'll be with her all day monitoring everything.
Was your mom taking dexamethasone along with the Temozolomide? And at what dosage? Thanks so much in advance.

Ugh....
I honestly cannot believe what she just wrote regarding the dex.😲
When you're dealing with a brain tumor, steroids are simply a necessary evil. If intracranial pressure spikes, everything goes downhill fast.
My mother was on steroids until the very end of her life. We adjusted the dosage up and down based on how she was doing. There isn't any other way, and that's exactly what the hospital advised us. At one point, Mom was on 24 mg, then we dropped to 18, then there was a period at just 8 mg, and eventually, she stayed steady at 14 mg.
It is especially vital that she stays on the dex while taking Temozolomide because, besides controlling brain edema, it also manages the nausea.
Lower the dose to 14 mg. They advised me to adjust the dose in 2 mg increments. Spread those doses out over three meals; if she takes the whole dose at once, the effect wears off by the end of the day and her condition could take a sudden turn for the worse. Watch her closely and taper slowly. If she starts crashing, bump it back up by 2 mg immediately.
Legally, a doctor can't just stop giving Temozolomide or any other medication without a valid reason—like if, after the first cycle given within 30 days of radiation, an MRI shows no improvement or at least no progression. Other reasons include a terrible blood count or severe side effects, etc. If she tries to pull this nonsense, warn her that you are well-informed about how this works. I have no idea what kind of protocol she's actually treating her with. Where is she even getting her treatment?
Send me the answer via PM, and feel free to tell me the doctor's full name.

Eric Diaz75 said:So, I could really use some advice if anyone has any.
My dad was diagnosed with colorectal cancer that had already spread to his liver last September. He had surgery to remove the primary tumor and then started chemo. However, right after the surgery, he went to see a specialist with my sister—this doctor was incredibly rude and condescending, and during that appointment, my dad suddenly felt numbness spreading down his entire left side. When it came time to start chemotherapy, they discovered two small spots on his brain. They think it’s metastasis, though we can't rule out that the stress from that encounter with the doctor might have triggered a stroke. It seems like once a cancer diagnosis hits, doctors tend to label every single abnormality as a metastasis without actually running the necessary tests to prove it. 🙏
After a few rounds of radiation, those spots on the brain shrank slightly, so he started taking dexamethasone to keep things under control. Then he moved on to chemo—eight cycles of Xeloda. He’d get an infusion every other week and then take two Xeloda pills orally for the rest of that week.
He was doing great at first; no nausea, he was working, walking, handling everything himself just like he wasn't even sick. The cancer seemed to be receding, and his labs were always looking good. But once that therapy reached its limit—meaning it stopped fighting the cancer and started just tearing his body apart—his blood counts tanked. The doctors prescribed eight more cycles of a much more aggressive regimen. I don't know the exact name, but doctors usually refer to these as the heaviest-hitting treatments available in the US. After the treatment, he'd be wiped out and unable to even stand up, but that would only last a couple of days before he was back to feeling fine. We even tried to get him access to Avastin, but the doctor said it wasn't necessary since the situation wasn't critical yet, and feared it would just further deplete his system.
Well, after his last treatment this past Tuesday, July 27th, 2010, he was weak for a few days and then seemed okay again. But then, this Sunday, he suddenly stopped eating entirely. He has no strength in his arms or legs, refuses to talk, and if he tries to eat anything, he vomits immediately. Since he takes so many medications but isn't eating, he just throws the pills right back up. His urine has turned a reddish color. He’s already had two IV infusions, but he keeps vomiting. This morning, we rushed him to the ER because he was a total wreck; he couldn't even lift his head, so we had to carry him in on a stretcher. They ran scans on his heart and lungs, checked his blood work, and monitored his blood pressure, and everything came back perfect. The doctors say this is "normal" given his diagnosis because he hasn't been eating. They gave him some nutritional fluids—basically a liquid meal replacement for chemo patients—and anti-nausea meds, because one day he took Zofran and still vomited. They think the IV will stabilize him and he'll be better soon.
Today, my mom and sister helped him to the bathroom, and even though they were practically carrying him, he collapsed and lost consciousness. He came to quickly, but his eyes rolled back in his head.
I'm hoping it's just because he hasn't eaten, considering he's dealing with about 30 pills a day, constant infusions, and heavy-duty chemo. But I'm terrified that something is happening with those spots on his brain, especially since he didn't take his dexamethasone last night to prevent vomiting, and I worry the cancer might have spread to his stomach.
We considered leaving him in the hospital today because we honestly don't know how to handle it when things go south like they did today. But then again, I think he'll get better care at home. In a hospital, the nurses might let him vomit or deal with his bathroom needs, which just leaves him suffering through the cleanup and changing. By the time they get to him with a basin, he'll have probably thrown up another hundred times. At home, we make sure that doesn't happen. We bought him adult diapers today because we don't want to put him through the struggle of trying to get to the toilet.
If anyone has any thoughts or advice, please just be straight with me—I need the honest truth, whatever it may be.
I just want this whole nightmare to be over. It’s gut-wrenching to watch someone who was perfectly fine and active just a few days ago now stuck in bed, suffering and unable to move.

Did your dad ever receive Avastin, and did any of your doctors even bring it up during his treatment?

Angela Wright said:Did your dad ever get Avastin, or did anyone even bring that up with you guys?

We can get Avastin whenever we want, really, but his doctor—who’s actually a close family friend—thinks it’s just not the right move for him right now. He feels like we can handle this through the current chemo rounds instead. It’s a tough one, though... just like any heavy-duty medicine, the best stuff can also be the hardest on the body. :S

Eric Diaz75 said:They can get Avastin whenever they want, but their doctor—who happens to be a close family friend—thinks it’s not the right move for this specific situation and believes the current chemo should handle it. He argues that while it might be the "best" treatment, it’s also incredibly brutal on the body. :S

Honestly, look, you need to get a second opinion. Just because someone is a friend and thinks they know what's best doesn't mean they're some infallible genius who has all the answers.

Angela Wright said:Honestly, honey, go get a second opinion. Just because someone’s a friend and means well doesn't mean they've got all the answers or are the smartest person in the room.

We've talked to several doctors and they're saying it's not quite as critical yet—his cancer actually shrank and he's responding to treatment. It's just that he's been having a really rough few days, and that's what's weighing on me...
I can't tell if it's because of what they found on his brain, the chemo, or just because he hasn't been eating anything at all. 😢

Hi everyone. I’ve been following this thread quietly for months now, just reading and absorbing everything, but I’m finally reaching out because things have become incredibly heavy lately and I don't really know who else to turn to...

My mom has pancreatic cancer. It's spread to her liver, her stomach, and I think her intestines too. She’s been losing weight and struggling to eat for a while, but these last few weeks have been truly devastating. Right now, she’s on pain patches—I think it’s Fentanyl or something similar—but the pain is constant. She spends almost the entire day just lying there and sleeping. We’ll be talking to her, and then a second later, she’s drifting off again. She can move, but only just enough to sit up for a few minutes before needing help. We have to support her just to get her to the bathroom. Her appetite is practically gone; she eats almost nothing. She lost a significant amount of weight since the diagnosis, but now... it's just heartbreaking. She's down to skin and bones. There isn't even any weight left to lose. Just two weeks ago, she could still get up and chat with us, but now, getting up at all is a struggle, and even talking feels like too much effort for her...
I’ve done a lot of research, so I think I know what we’re facing, but knowing doesn't make it any easier... I’m only 18, and I have two younger brothers. My mom hasn't even hit 40 yet. 😢 We’re all way too young for this, aren't we?
I guess I just don't know how much longer this phase will last. Is there any chance it stays like this for just a few more weeks?

It’s exhausting, both mentally and physically... This awful disease... we always thought it would be okay. We were so optimistic, maybe even naive. Since she was young and it was caught relatively early, and things were stable for a couple of years after the initial diagnosis, you start to think, "Maybe it won't hit us this hard," and then suddenly, everything is spiraling downward. To make matters worse, I've ended up taking over everything—all the cleaning, the cooking (which I'm honestly not great at, I know, it's nothing to brag about, but I'm trying...), and our house is massive. It's in complete disarray right now and I feel like I can't stay on top of it. On top of that, people are constantly coming by. I understand they want to see Mom, but it's such an overwhelming pressure on those of us living here... we're constantly preparing lunches, coffee, snacks for visitors, and then cleaning up the dishes afterward... it feels like I'm working shifts at a restaurant.

Anyway, that’s just where things stand with me. I've reached my breaking point today, but I think I can head back to work now without feeling quite so on edge. I really hope that for the rest of you here, things are going okay and that you're seeing some improvement. 🙂

Grace Flores14 said:Hi everyone. I’ve been following this thread for months now, but I’m finally speaking up because things have become quite difficult, and I just didn't know who else to turn to...

Dear Grace,
you really shouldn't have to deal with all of this at such a young age. My father passed away when he was 72, and even then, it felt far too soon.

I have to say, I truly admire how you still manage to take care of guests who come by the house despite everything else you're carrying. Is it actually reasonable for people to expect meals and desserts to be prepared under these circumstances? Surely being there for your mother should take precedence over hosting visitors.

You deserve a lot of credit for your maturity and strength.

Stay strong.

Grace Stewart6 said:Dear Max,
you really are far too young to be going through what you're dealing with right now. My dad passed away when he was 72, and even then, it felt way too soon for me.

I have to say, I truly admire how you’re still looking after guests who come by the house despite everything else. I don't quite understand why people would actually expect you to be prepping lunches and baking treats in a situation like this. I mean, surely being there for your mom is more important than tending to visitors.

You really have my respect for your maturity and your strength.

Good luck, and hang in there.

Thank you for those kind words. 🙂

Well, honestly, it's mostly just Mom who expects us to prepare things for guests, so I feel terrible about letting her down. She gets upset over it, and I really want to avoid that at all costs—not that I blame her, of course; she's hurting, and I suppose everything just feels overwhelming to her right now.

Dear Max, I am so incredibly sorry for what you’re going through 😢 especially since you're still so young, and then there's your brothers, and of course your mom... I'm sending you all the strength in the world to get through this. It's hard, and it’s going to stay hard. Your story really hit me deep.

Grace Stewart6, my dad passed away when he was 72. I actually posted about it here on the forum not too long ago, and everything just moved so, so fast. They kept telling me things would escalate quickly and they told me to pray for it to be over soon—but honestly, I didn't think it would happen quite this fast.
I still struggle to even talk about it. I go about my life, I post and chat about other stuff, I keep busy with other things, but the wound is still fucking fresh—it'll be a month this month.
Thank God he didn't have to suffer too much (just a little shortness of breath and that was basically it)—he was gone less than a month after the diagnosis.
And just like you, I feel like it was way too soon... if I had been 18 back then and he wasn't even fifty...
Max, I know exactly what's ahead of you and what to say. Just hang in there, okay? This will eventually pass. Sending you 🙂 and if you ever need to talk, even if it's just virtually, please reach out.

Regarding your question about how much longer it’ll last—honestly, nobody can give you a straight answer.
The doctors kept telling me my dad probably had a few more months, maybe six at most. But one doctor looked at the labs and told me it was really just a matter of days.
And that’s exactly what happened. I think it was maybe a week after he got discharged from the hospital—if it was even a full week, maybe less—that he was back home with me. For the first two days, he could handle the bathroom by himself and wander around the house and yard. Then, for the next two, he could barely get up without help. Two days before he passed, the trek from his bed to the toilet took him about ten minutes, plus another ten minutes just sitting there because he couldn't catch his breath. He was on oxygen non-stop (home concentrator). On that final evening, we watched a game together, and he actually ate quite a bit and even sang along. As bedtime approached, though, he started getting restless. It drove him crazy when I kept asking him questions—and he wasn't sleeping well anyway, since he couldn't sleep in bed because of the breathing issues; he had to sit in a chair instead. I was an absolute wreck too, terrified of the night because that's when his breathing got worst and he'd struggle for air (nighttime has its own way of being heavy, as they say...). That night, he fell asleep in the chair and then, around 1 AM, he just collapsed onto the floor. We called 911, they rushed him out, we chased after them, and we waited and waited... He passed away during resuscitation efforts; he went into respiratory arrest. He stopped breathing. Was it choking? Cardiac arrest? I'll never know what that actual final minute felt like.
That was July 8th.
You wouldn't look at me and see how heartbroken I am. Most people would tell you I seem totally fine. Some might even find it weird, I guess. I haven't locked myself away, I haven't stopped going to work, grabbing coffee, or heading out for drinks. It's just that a part of me withered away. I don't cry every single day anymore, maybe every second or third day now. And yeah, it hurts. It fucking hurts. Sometimes more, sometimes less, but not a single day goes by where I don't feel it.
But since then, I rarely talk about it. I guess I just needed to vent here... and that's that. Sending big kisses to everyone reading this thread.

Eric Diaz75 said:We’ve gone over this with several different doctors, and the consensus is that things aren't quite as dire as they initially seemed. His cancer markers have actually decreased, and his treatment plan is moving along successfully. Honestly, everything was looking steady, which is why I'm feeling so uneasy right now—he's just had a really rough few days, and it’s hard not to worry when things take a sudden dip like this.
I honestly can't tell if it's because of the brain damage from the chemo, or if he just hasn't eaten anything lately. 😢

Look, there’s a standard protocol for treating colorectal cancer. If you've got those wild-type markers confirmed by a K-ras test, the go-to options are Avastin or Erbitux.
Both of these medications are smart choices, and they come with way fewer side effects than the chemo your dad is currently battling. Honestly, I think it’s completely idiotic to keep stabbing someone with something that absolutely wrecks them—both physically and mentally—just out of a desperate hope that it might work, especially when there are these newer, innovative drugs available that actually target the tumor directly.
If Dad actually has melanoma—I’m still not entirely sure if he does—then it is absolutely justified to start him on one of these two medications as his first line of treatment. Especially now that they've finally been added to the Medicare formulary. If we wait until things progress to a second-line treatment, the government isn't going to pick up the tab anymore; he'll be stuck paying for it out of his own pocket, and let me tell you, these drugs are incredibly expensive. Otherwise, you just keep taking the medication for as long as it remains effective, which could easily mean decades of treatment.

Angela Wright said:Look, there’s a standard protocol for treating colon cancer. If the K-ras test shows they have wild-type, the go-to options are Avastin or Erbitux.
Both of these are smart drugs, and honestly, they don't wreck you nearly as hard as the chemo your dad is currently on. Personally, I think it's just plain crazy to keep hitting someone with stuff that totally crushes them physically and mentally just because we're hoping it works, especially when these newer, innovative drugs actually target the tumor directly.
If your dad has specific targets—I'm not sure if he does yet—it makes total sense to start with one of these two in the first line of treatment, especially since they're covered under Medicare now. If things progress to a second line of defense, he might not be able to get them covered by insurance anymore, meaning he’d have to pay out of pocket, and man, those aren't cheap. Otherwise, you just keep taking the medication as long as it's working, which can literally last for decades.

Thanks so much, finally someone who can explain this clearly and simply. My dad does have metastases; they were in his lungs but cleared up, so now it's just in his liver. Thanks again, seriously. 🙂

My dad passed away this past Sunday. He fought like hell until the very end—even Sunday morning, he was still trying to reach out and pull himself up with our help.
The biggest lesson I've learned through this whole nightmare is that you can count the doctors actually doing their jobs at the local hospital in Boston on one hand. If you find yourself in this situation, my advice is to get as far away from there as possible. It feels like the people in white coats are just shoveling money into their pockets while providing zero actual care.
How do they live with themselves?
Thanks to everyone for the support, especially Angela Wright. All we can do now is hope Dad is in a better place.
Best,

Eric Diaz75 said:My dad’s heart stopped beating this past Sunday. He lost the fight, even though he was swinging at it until the very last second—even Sunday morning, he was trying so hard to reach out and let us help him up.
The only thing I’ve learned through all this nightmare is that you can count the doctors who actually know what they're doing at the Coors Field clinic in Boston on one hand. If you ever find yourself in this position, my advice is to run as far away from here as possible. In this place, people in white coats grab money by the shovelful while doing absolutely nothing to help patients.
How do they live with themselves?
Thank you all for the support, especially Angela Wright. All I can do now is hope Dad is in a better place.
Best,

Hannah, I am so incredibly sorry. Please accept my deepest condolences.
Unfortunately, when dealing with an illness like the one your father had, doctors are often powerless—especially when they're stuck working within broken healthcare systems like the ones we see here in America. They end up just guessing. Since I've been spending more time around medical professionals lately, I can see how frustrated they actually are. Sure, there are plenty of parasites in the field, but most of them are just miserable, bitter people.
Hang in there, and may your father rest in peace.

Hey everyone, I could really use some insight, an answer, or just some help here...

My dad has been fighting lung cancer for about seven months now—they actually decided against surgery because they felt it wouldn't make a difference in his outcome. He’s handling the illness pretty well, all things considered; he’s on pain medication, and while he’s moving a bit slower than usual, he’s still up and walking around, which he has been for the last three months. He’s finished two rounds of chemo and is heading in for the third one tomorrow. Tonight, though, his pain spiked a bit, and I noticed his right arm is significantly swollen... he's usually quite thin, which is common for patients dealing with this kind of thing. Does anyone know what might be causing that swelling?

p.s. My heart goes out to all of us navigating similar situations, especially our loved ones who are fighting these battles...

Samuel Reed5 said:Hey everyone, I really need some information, an answer, or just some help...

My dad has been fighting lung cancer for seven months now. They wouldn't operate because they said it wouldn't make a difference. He’s holding up okay considering everything—he's on pain meds and his movement has slowed down, but he's still mobile, which has been the case for the last three months. He’s had two rounds of chemo and goes in for the third tomorrow. Tonight, his pain spiked, and I noticed his right arm is incredibly swollen. Usually, he's quite thin, just like most people facing this kind of battle. Does anyone know what could be causing that swelling?

p.s. My heart goes out to all of us in this position, especially our loved ones who are sick.

It’s possible the tumor has metastasized and is pressing against a vein, which causes the arm to swell. Is the arm looking red at all? If it is, there’s a chance he might have a blood clot. Either way, you need to get him in front of a doctor immediately.

His hand is looking a little flushed, just a tiny bit... I took him to see the doctor today for his third round of chemo, and he showed her the arm, but she still can't say anything for certain quite yet.
She mentioned there's a chance the cancer might be pressing against a blood vessel or maybe some lymph nodes or something like that... Anyway, he's at the hospital now so they can run some tests and look into it properly—thanks so much for the support, Angela Wright 👍

It’s been about six weeks since my mom’s surgery for colon cancer—they found a few affected lymph nodes, too... physically she’s bouncing back, slowly putting some weight back on after dropping over 20 pounds during the whole ordeal, though her iron levels are still lagging a bit behind.
The real issue is her mindset; she’s lost all faith in the recovery process and has fallen into this depressive funk that’s just incredibly hard for us to witness. We took her to see a psychiatrist and they prescribed two pills... I can't help but wonder if she should actually take them, or if this mental slump will just pass on its own once things settle down. She’s heading in for a consultation next week regarding radiation or chemo, so hopefully being around other people facing the exact same battle will help things look up...