Support resources for families dealing with cancer and other serious illnesses

Susan Fowler35 said:I want to jump in here too... my dad had colon cancer surgery three years ago. He went in for checkups every three months and everything looked fine until about two and a half months ago when things took a turn for the worse. He started getting these intense dizzy spells and eventually collapsed, landing him in the ER. That’s when they found out he had three tumors in his cerebellum, one in his cerebrum, and some in his lungs. Basically, the metastases had spread, and from there, it was just a downward spiral.
He spent five weeks in the hospital, and for two of those, he was completely bedridden. His motor skills tanked so badly he ended up needing diapers. He managed a tiny bit of recovery—just enough for them to clear him for radiation therapy—but after five sessions, we were waiting another three weeks to see if he’d get strong enough to walk so he could start chemo. Instead, he crashed again after that treatment, and he’s just getting worse by the day.
Now he’s on oral chemo. On top of a mountain of pills, he was prescribed Medrol, which he absolutely cannot stomach; it just makes him vomit. For the last two days, he hasn't eaten anything, and he’s developed sores in his mouth.
I keep checking in with one specific oncologist who actually told me I could call him whenever we hit a wall. Honestly, you have to hand it to doctors like that, even though they're few and far between. 😢
What I really need to know is if anyone has advice. I know he doesn't have much time left, but I want to find ways to make him more comfortable. He hasn't eaten in two days, won't take the chemo pills, refuses the Medrol, and will only take Dexamethasone and morphine for the pain.

Well, Medrol is a corticosteroid. I'm not sure why else he'd be taking it if he's already on Dex. 🤷
Usually, when people are on steroids, they're also given something like Pepto-Bismol or an antacid for the stomach specifically because of that.
If you want to help your dad, the priority should be managing his pain, making sure he isn't hungry or thirsty, and keeping him clean. But most importantly, make sure he's surrounded by people he loves. If possible, keep him at home in his own bed.

I’m posting here even though this is technically an RA thread, mostly because I don't want to scare anyone on a different board with a post that isn't exactly uplifting. My apologies if this is the wrong place to vent.
We're talking about a 79-year-old woman who just started proper therapy for her RA after living with the diagnosis for years—years that were spent mostly in and out of hospitals. Now that she's immobile, they finally started the right treatment, but we've hit some major roadblocks: she has three types of bacteria in her kidneys (which I assume is linked to the RA?) and pneumonia. Despite the medication, her fever won't break.
The doctors are being pretty tight-lipped, so all I know for sure is that there's systemic inflammation, which suggests the arthritis is spiraling out of control. She's receiving transfusions, but her bloodwork isn't improving, the antibiotics aren't working, and the infections just won't budge. They told us we have to wait a few days to see how her body reacts, but since her veins are shot, their options for IV access are incredibly limited. To put it bluntly, if this current round of treatment fails, we might be looking at the end...
Because I'm pregnant 🙂, I'm not allowed to stay at the hospital to get more details. Is waiting really our only option? It's been two weeks of no progress—actually, things are getting worse—while the treatment remains exactly the same. I realize the old, untreated state of her condition plays a huge role and her body is essentially shutting down, but is there truly nothing else that can change this outcome? This waiting period is honestly the hardest thing in the world.

Question... maybe this has been asked and answered already, but if you don't mind helping me out again... my dad just finished his second round of chemo for Stage 3 colon cancer, and now he’s dealing with those mouth sores that always seem to pop up with treatment. What should he be using for rinsing or topical relief? Any suggestions? (Just a heads up, he’s taking beta-glucan and aronia to boost his immune system—not sure if that’s enough or if he needs to add anything else to his routine.) Also, does anyone here have experience with Graviol? Thanks, thanks.

Sarah Wells23, unfortunately, we're stuck playing the waiting game with antibiotics. If things don't start looking up soon, we're looking at the risk of sepsis... let’s try not to get too pessimistic though; sometimes older folks just need a little more time for the body to catch up.

Austin Stewart2, you might find some relief using a Betadine mouthwash or even just rinsing with sage tea.

Austin Stewart2 said:Quick question... maybe this was already asked and answered somewhere else, but if you don't mind me asking again... my dad just finished his second round of chemo (Stage 3 colon cancer) and now he’s dealing with those nasty mouth sores—pretty standard stuff after chemo, I guess. Does anyone know what he should use for rinsing or coating them? thanks... (just a heads up, he's taking beta-glucan and aronia to boost his immune system... not sure if that's enough or if he needs to start adding more stuff into his routine...) also, does anyone have experience using Graviol? thanks, thanks....

If sage doesn't do the trick, try Citrofyt—it's basically like an antibiotic (grapefruit seed extract). It clears up my canker sores in like a day or two, whereas normally they hang around for a week. It's worth a shot, honestly—it's an antifungal, so it shouldn't hurt, and since it's plant-based, it's pretty safe.

Thanks a ton for the advice on dealing with mouth sores... he’s being a pretty stubborn patient. We're at home trying to throw everything at him—lots of over-the-counter stuff doctors won't even bother suggesting to help boost his immunity—but he just blindly follows whatever the docs say. If it isn't a prescription, he won't touch it. It's like he thinks natural remedies are somehow "cheating" or going to mess with how the chemo works. We finally managed to talk him into taking some beta-glucan and aronia, but I really wish he'd open up to other natural options instead of relying solely on chemotherapy.

Angela Wright said:Sarah Wells23, unfortunately, antibiotics and waiting are the only paths forward here. If there's no response, sepsis is the next hurdle... let's try to stay positive, though; sometimes older folks just need a bit more time to fight.

By the time she was admitted to the hospital, she was already teetering on the edge of sepsis. Things have stabilized slightly since then, but she’s fading; she’s incredibly weak, and we haven't been able to stabilize her blood counts even with transfusions.
I am trying my best to stay optimistic, especially since this caught us completely off guard. Everything seemed fine just the day before she went in—she felt okay—and then suddenly she just stiffened up overnight (we're still trying to piece together exactly what happened, but now even she can't tell us anymore), and then this whole situation unfolded. The doctor mentioned that because the RA has progressed so much over the years without effective treatment (or rather, with the wrong therapy), this is somewhat of a common scenario. Once the bone issues settle, the blood work starts to decline, and these stubborn infections take hold... at this point, all we can really do is wait. The situation remains largely the same, though her fever has finally broken.

Nancy Lee said:My dad was discharged after being diagnosed with malignant lymphoma in his neck. He’s been given Taxol and is scheduled for radiation on his neck in three weeks.
The doctor told us the scintigraphy results were fine, and we were sent home right after that, receiving everything by mail—including this message I’m writing to you all. We can't reach his doctor right now because he's traveling, so I am once again asking you, or anyone who actually understands this stuff, to please explain these scintigraphy findings.

It's possible there's a target, but it's also possible there isn't. I can't give you a straight answer because I don't have the complete picture in front of me, like X-rays, calcium levels, or phosphorus.
But look, if they told you the results were clear and the diagnosis doesn't mention bone involvement, then I really don't see why you need to overcomplicate things.

Sarah Wells23 said:I'm posting here even though this is about rheumatoid arthritis, because I wouldn't want to scare someone off on a different thread with a post that sounds this grim. So, my apologies if this is the wrong place.
We're talking about a woman, 79 years old, who only recently started actual therapy for RA despite being diagnosed years ago—she spent a massive amount of time in the hospital during those intervening years. Now that she's immobile, she finally started the proper treatment, but here's the situation: she has three types of bacteria in her kidneys (which I assume is also a consequence of the RA?) and pneumonia. Despite the medication, her fever won't break.
The doctors are being incredibly tight-lipped, so all I know for now is that she has inflammation throughout her body, which suggests the arthritis is spiraling out of control. She's getting blood transfusions, but her blood work isn't improving at all; she's not responding to antibiotics and the infections aren't clearing up. They said we have to wait a few days to see how her body reacts (her veins are shot, so they have very limited options for IV access), essentially saying if this current therapy fails, that's it...
They won't let me go into the hospital to get more information because I'm pregnant 🙂 and I'm wondering: is waiting truly our only option? It's been two weeks and nothing has changed—if anything, it's getting worse—while the treatment remains exactly the same. It's obvious to me that the old condition is playing a huge role and her body is just shutting down, but I still need to know if there is *anything* else that could change this situation... this waiting is absolutely agonizing.

That's all a bit scattered and messy, and honestly, it gives us nothing concrete to work with.
What I will say is that they absolutely need to perform a blood culture and appropriate antibiotic testing based on the ABG Quote.

Austin Stewart2 said:Question... maybe this has already been asked and answered somewhere else, but if it isn't too much trouble, I’d really appreciate some guidance here. My father just finished his second round of chemo for Stage 3 colon cancer, and now he’s dealing with those nasty mouth sores—it seems like such a common, miserable side effect of the treatment. What should he be using for rinsing or topical relief? Any recommendations? (Just as a side note, he’s currently taking beta-glucan and aronia to help boost his immune system... I’m honestly not sure if that’s enough or if there’s something else he should start adding to his regimen.) Also, does anyone here have actual experience using Graviol? Thanks, thanks a million...

Gelclair.

vividsailor7 said:It all sounds like a disorganized mess, yet there isn't anything concrete being said here.
What I can say is that they really need to perform a blood culture and administer the appropriate antibiotic based on the ABG results.

How am I supposed to provide any coherent insight without seeing the actual lab reports? All I have to go on are the details I receive over the phone. To give you some context, her initial diagnosis for the two-week hospital stay was rheumatoid arthritis. She originally came in after falling out of bed; she couldn't get back up because of excruciating joint pain and massive swelling. Given her fragile bone density and the fact that she has an artificial hip, she took quite a hit from the fall. They kept her hospitalized because she had a major hematoma from the impact and simply wasn't mobile.
After spending a week in the hospital, just a couple of days before they were planning to discharge her overnight, her condition took a turn for the worse. She developed a fever, and while I don't have the labs right in front of me, I know they identified anemia, elevated ESR, and high white blood cell counts—those were the most significant abnormalities. Her urinalysis showed bacteria, her kidneys were starting to fail, and she developed pneumonia. Because she started losing consciousness and became unable to speak, they rushed her to neurology, where they diagnosed cerebral ischemia. They had to insert a catheter due to kidney failure, and she’s now starting antibiotic therapy and receiving a transfusion.
According to the doctors, everything is a complication of the RA. They're struggling to stabilize her kidney function, lungs, and general circulation because nothing seems to be working; as soon as one infection is treated, another emerges. It's a critical situation, and now we're just waiting to see if her kidney function recovers and what happens with her circulation.
Physical therapists come by every day to massage her, and she had been exercising daily until then, but since she's been lying still for two weeks, she's developed pressure sores.
She started talking again today and is becoming aware of her surroundings, though the doctor says it's too early to tell if that means anything significant. 🤷

Need some advice... I dropped my dad off at the hospital today. He finished his second round of 5-FU chemo for Stage 3 colon cancer about a week ago, and honestly, everything seemed fine until yesterday. He had some nausea, and he developed some mouth sores that made eating tough, but they were just rinsing with sage and he’s been taking beta-glucan and aronia to try and boost his immune system. Yesterday, he could barely eat anything, and then last night he passed out while heading to the bathroom and hit his head. We called 911, he ended up in surgery for head scans, but everything looked okay there. He’s back home now, but he hit a fever of 101.3 last night, which we brought down immediately. This morning he ate breakfast and lunch pretty well—whatever he could manage. His temp was 98.6 this morning, and he didn't have a fever during the afternoon, but then he fell out of bed while napping. He snapped out of it right away, but then he vomited and it looked like he blacked out again for a second. Then this massive chill hit him and he was shaking uncontrollably for at least half an hour. I rushed him straight back to the hospital. Initial labs show his white blood cell count is tanked—only 1. They suspect an infection and are waiting on more results before they start hammering him with antibiotics. Is it actually possible for things to go south this fast overnight? (His WBC was 11 before chemo started). Also, what are your experiences? Do people pull through infections like this, and what happens to the rest of the chemo schedule? Thanks.

Austin Stewart2, infections aren't exactly rare for cancer patients undergoing chemo, which is why any spike in temperature triggers immediate antibiotic treatment. His immune system has been completely wrecked by the treatment, so he’s basically a sitting duck right now. You have to be incredibly careful—no wandering around aimlessly and definitely no visitors. Something that we healthy people might brush off as a minor sniffle or a scratchy throat can turn into a life-threatening crisis for someone in his position. There's some nasty virus going around lately that wiped both me and the baby out; we actually ended up spending a day at Chicago Mercy because apparently, everyone is catching this thing. He won't be able to touch chemo again until this infection settles down and his white blood cell count climbs back up. They'll probably put him on Neupogen to get those numbers moving.

It’s pretty funny because this guy is basically a walking textbook for that pseudo-philosophy "natural healers" peddle—the kind of nonsense you have to steer clear of at all costs. Honestly, if you find yourself near those types, you might as well be carrying garlic around your neck along with a crucifix and holy water just to stay safe.

Hey everyone,

So, my dad just finished his third round of chemo following the PE protocol—for those who aren't in the loop, he’s dealing with occult microcellular cancer with some metastasis in his liver and bones. Honestly, he’s holding up pretty well. His bloodwork keeps getting better every single time; liver numbers are back to normal now, though his GGT is still hovering a bit high. His hemoglobin is slowly creeping up too (he’s taking 4 tablespoons of iron syrup daily). The best part? He isn't in any pain anymore. We actually had to scale back his patches from 100 down to 50 because they were becoming way too intense for him—every time I tried to change a patch, he’d end up vomiting the next day. We tracked it closely enough to be certain it was the adhesive and not anything else; even the 75 strength was too much for him. Aside from some natural propolis, he’s also taking Imunosal, which has been a lifesaver for us since it packs beta-glucan along with B vitamins, zinc, folic acid, and vitamin C—all of which help him absorb the iron he needs to take. He takes three capsules a day, which totals 900 mg of beta-glucan, and it’s actually reasonably priced ($48 60 capsules) if anyone is looking for info.
Just a month and a half ago, my dad couldn't move an inch—he spent two straight months stuck in bed. Now? He’s walking on his own and has even put on a few pounds. We had that third chemo session last Tuesday, and for the entire week afterward, he was out walking through the woods picking mushrooms. 🙂
Last time, the nausea was brutal—it hit him hard—so we picked up some Ondator (the tablets are called Ondator, but it's the exact same stuff as Zofran, $43 10 tablets). He took those and the nausea didn't stand a chance 🙂 so this most recent round was much easier to manage.
Anyway, his doctor barely recognized him when we showed up last week; she couldn't believe how much he'd bounced back since her last visit.

So yeah, we’re moving forward, one day at a time. We’re hanging in there, staying positive, and believing things will improve despite the diagnosis. Our first follow-up CT scan won't happen until after the 6th cycle, so we have a bit of a wait before we know more.

If anyone has questions about our situation, feel free to ask. 😉

I totally forgot to mention—we’ve been dealing with mouth sores too. My dad has always struggled with them, but now that he’s doing chemo, they’ve become even more frequent. On top of that, his gums get incredibly sore every single time after a session. I actually reached out to our dentist to see if there was anything we could apply to help speed up the healing, and she recommended methylene blue. She uses it for gum inflammation and similar issues; apparently, we can apply it multiple times a day to the entire oral cavity—lips, tongue, you name it, it all works.
Anyway, you can probably pick some up yourself or just check with your own dentist. Our dentist really understands what my dad is going through with the chemo treatments, and she’s honestly been such a lifesaver.

Rachel Wood27, I’m so glad to hear that!
We actually have some good news on our end too (same microcellular stuff). Just a few days ago, my dad was basically bedridden. He could barely make it to the bathroom, and mentally, he was just... somewhere else. He’d spend an hour just staring blankly at a single spot on the wall.
Now? It’s like a different person. He’s walking, eating well, his mood is way better—he even went out for coffee. Total turnaround. The only thing is his voice hasn't quite come back yet, and there's a bit of a cough (though nothing constant). I guess we'll see if the radiation helps clear that up, too.
I'm relieved.😍

Thanks for all the advice, everyone. Honestly, things are just going downhill here by the day. We checked him into the hospital on Sunday, and his initial labs showed low white blood cell counts. He’s also been complaining about abdominal pain. He had two abdominal CT scans yesterday, but the internal medicine team and the surgeons are basically stumped. They're dealing with a massive intestinal infection, but they can't tell if his gut looks like that because of dehydration or if tissue necrosis has actually started. Since he's in such rough shape, he isn't even a candidate for surgery right now. They moved him from internal medicine to surgery today, he's on a feeding tube, and things look pretty grim. I'm still holding out hope we can beat this infection despite the bad prognosis, but it's hard. I just can't wrap my head around how he could crash this hard overnight. His oncologist is just as blindsided—he showed up for his second cycle looking better than ever, but then everything fell apart just a week after finishing that cycle, and within forty-eight hours, he's completely tanked.

Hi everyone.
Last May, my mom (who’s 55) happened to feel a lump, which turned out to be malignant breast cancer on her right side. It happened so fast—they had to perform a full mastectomy, and once she recovered, she was prescribed six preventive rounds of chemo, every 21 days, at a major cancer center in Chicago.
Honestly, the chemo hit her pretty hard. We expected the hair loss, but her toenails fell out and everything. The mental toll was just as bad; the nausea and vomiting would kick in the second we stepped foot in the hospital building, even before she actually received the treatment.
We fought through those six doses, and afterward, they recommended another year of maintenance therapy without the heavy side effects, pending approval from Medicare. However, she refused all of that. Instead, she decided to go the alternative route with things like Shiitake mushrooms, Noni juice, and whatnot.
Her physical test results are actually great, so everything looks fine on that front, but her mental state is just a disaster. She’s become incredibly verbally aggressive and prone to making scenes in public. She has zero tolerance and an extremely short fuse; if something isn't done exactly her way, she starts screaming at anyone and everyone, regardless of where we are or who is watching. Even the most trivial things can set her off to the point of hysteria, which usually ends with her needing a sedative. The worst part is the paranoia—she starts inventing scenarios in her head and refuses to let them go. The next day, if you try to bring up what she said or who she yelled at, she'll swear she never said it.
I'm wondering if anyone else has gone through something similar? Any advice at all?

Hey everyone. It’s been a while since I last posted. My dad fought it for a year—it was a rough road, honestly. Things got pretty dark toward the end when he dealt with gangrene in his other leg and kidney failure, and we finally had to say goodbye back in July. But there were good moments too, and I'm just grateful we got that extra bit of time together—even if it was hard, we found those little pockets of happiness. It helps knowing he isn't hurting anymore. I miss him every single day, but I choose to remember him at his absolute best... he knew how much he was loved, and he was truly the best to me. So, I try not to dwell on the bad stuff.
I think it's hitting my mom the hardest—not just because she misses him so much, but because she lost her brother just 18 days after my dad. Now she's worried about her own mom, who's getting older, and it’s all just been such a massive weight on her.
Still, life keeps moving whether you're ready or not. Mom went back to work, and I started college—which meant dealing with exams at the worst possible timing, though somehow I passed them all. Life doesn't pause for anyone. We grieve on our own terms when we can, but you really have to find that inner strength to keep going and hold onto the good memories. There's no other way through it.

I just wanted to say—no matter how brutal it feels right now, I believe everyone eventually finds the strength to carry that pain. Maybe it gets easier with time? Who knows. It's probably the hardest thing a person can go through, but just try to stay hopeful. Spend that time together while you can. Later on, those moments will mean everything.

Also, our loved ones are going through their own battles, and they need extra support—both physically and mentally. Everyone handles illness differently, and they really need an unbiased professional to guide them through the chaos. These things are complicated and heavy; you can't just hope they'll pass on their own without dedicated care.

Sending nothing but strength, love, and patience to all of you. I haven't caught up on every single post since I've been away from the thread, but I just felt the need to reach out and offer some comfort. 🙂

Chloe Gray5 said:Hey everyone. It’s been a while since I last posted. My dad fought for a whole year. That year had plenty of ugly moments—especially toward the end when he developed gangrene in his other leg, his kidneys failed, and we finally said our goodbyes in July. But there were beautiful moments too, and I’m just glad we got to spend that little bit more time together and find some happiness even during the darkest times. It helps knowing he isn't suffering anymore. I miss him every single day, but I always choose to remember him at his absolute best. He knew how much he was loved, and to me, he was the best. So, I try not to dwell on the worst parts.
I think it's hardest on my Mom—not just because she misses him terribly, but because she lost her brother only 18 days after my dad. Now she's worrying about her own mother, who's getting older, and the whole thing has just been such a massive blow to her..
Still, life keeps moving. Whether we want it to or not, Mom went back to work, I started college, and I actually had to take exams during the absolute worst timing possible—but I passed them all. Because life doesn't pause for anyone. We grieve on our own terms when we can manage it. But honestly, finding the strength to push forward while holding onto those good memories is the only way. There's no other choice.

I just wanted to say that no matter how hard it gets, I believe everyone eventually finds that strength to accept the pain. Maybe it gets easier as time passes, maybe not—I don't know. I know this is one of the hardest things a person can go through, but please, believe in the best as much as you can. Maybe things will turn out okay. Just spend that time together. Later on, that'll mean more than anything else.

Also, our loved ones going through this are enduring their own struggles, and they need extra support—both physically and mentally. Everyone experiences illness differently, and they really need an unbiased professional to give advice on how to cope and make things easier. These are all incredibly complex, heavy issues; you have to dedicate yourself to them. You can't just hope they'll pass on their own.

Sending everyone all the strength, love, and patience in the world. I haven't read every single post because I'm so far behind on this thread and I'm not fully caught up, but I still wanted to reach out and offer some comfort. 🙂

That was so beautifully written! Seriously, kudos to you—so young and yet so full of understanding despite all that grief. Sadly, our loved ones leave us, but we have to keep living and let the mourning process happen... however that works for each person.... May they rest in peace... to everyone who lost their battle with illness!

Hey everyone, I stumbled upon this forum while searching online. I’ve been trying my hardest to translate this medical report into plain English—something actually understandable—but I’m totally stuck. If anyone could help me make sense of this, I’d be incredibly grateful. So, here’s what the report says... The patient was admitted to the clinic for a status re-evaluation following an anterior low rectal resection with mesorectectomy and colorectal anastomosis, due to rectal adenocarcinoma with liver metastases. Post-op, the patient completed four cycles of chemotherapy (FOLFOX). A recent MSCT scan shows nodular changes in both lungs, up to 5mm in diameter, along with target lesions in the liver, which look like secondary deposits. Upon admission, a full workup confirmed these diagnoses. An MRI of the abdomen and pelvis revealed multiple focal lesions in the basal areas of both lungs, measuring up to 26x17mm, appearing as secondary deposits. In the liver parenchyma, there are multiple focal secondary lesions, the largest being in segment V at 26x17mm. There is also evidence of peritoneal dissemination and abdominal lymphadenopathy.