Support resources for families dealing with cancer and other serious illnesses

feralridge3 said:It didn't work because I'm already staring down a second relapse.

So where does that leave you?😢
Did you at least give that alternative route a shot before calling it quits?

Laura Long79 said:Hey 🙂

I could really use some advice here:
I’ve basically lived through this nightmare myself—Non-Hodgkin lymphoma involving the appendix, deep in the pelvis and bladder, followed by chemo, six months of being bedridden, sepsis from a poorly cleaned catheter, and even clinical death. I totally get why people are so frustrated with our doctors; between the ruthless money-grabbing, the arrogance, and nurses who act unprofessional and take their own complexes out on patients—though there are plenty of exceptions 🙂 (I only remember the ones worth remembering). It's been ten years since all that. Anyway, I truly wish everyone here a speedy recovery.

But now, I find myself in a spot where a relative has fallen ill. She isn't originally from around here, so I've been visiting frequently, trying my best to stay positive for her. She has uterine cancer that has spread to the colon—it's in a really uncomfortable spot—and she’s undergoing radiation and chemo. Her mental state, though... it's devastating 😢 I honestly don't know how to help anymore. She hasn't slept a wink in three weeks, she's deeply depressed, and she’s essentially preparing everyone for her death. She's a woman in her prime, 53, so we aren't talking about someone just feeling old. No matter how much I try to encourage positivity, it only lasts while I'm sitting right there; the second I leave after an hour, it's the same story. Maybe I've just become hardened because I went through this myself, so I try to point out that spiraling into negativity doesn't help the physical battle—in fact, it probably makes it worse. So, I was thinking about lending her some "optimistic" book about healing or something along those lines to read.
If anyone has a recommendation for a book, or any advice on how to "distract" her, I would be incredibly grateful because I'm completely out of ideas.

She’s acting like someone at the very end of their life (which is hard, I know, but there are countless cases far more dire than hers), refusing to get out of bed or even take a walk, crying constantly (several times a day, ever since she found out a few months ago), and she can't sleep. To make matters worse, her doctor suggested seeing a psychiatrist, which triggered an even bigger meltdown—she starts sobbing just at the mention of it. Coming from a small town, she seems to think only "crazy people" go to see a shrink. I just don't know what to do. It’s painful to watch a woman destroy herself like this, especially when there might actually be a good outcome ahead if she could just pull it together. If this continues, she’s going to drag me down into depression with her. 😢

Laura Long79, where exactly does the woman live? Here in the States, there are associations that provide psychological support.
Sometimes with people like this, a bit of "shock therapy"—just being brutally honest—actually works. But ideally, you should consult with a psycho-oncologist to get a better grasp of the situation and receive guidance on how to handle her moving forward.
Try to contact Dr. Marijana Braš or Dr. Veljko Đorđević at the Mayo Clinic to set up some consultations regarding this situation.

I’ve been away for a few days, and you all certainly haven't slowed down while I was gone 🙂 It’s genuinely heartening to see some familiar faces returning to offer their support, and even more wonderful to hear that people like fadedtrucker5 are doing alright
Kate James38, I truly believe you're going through an incredibly difficult time, and I suspect that, like most of us, you aren't exactly thrilled with the medical professionals involved; we aren't either, yet we find ourselves forced to rely on them, and if we can't fight the system head-on, we simply have to learn how to navigate it. My father-in-law went through a period where he was extremely weak, and he certainly wasn't in any position to be chasing doctors around hospitals or hunting down information himself, but my husband and I took it upon ourselves to knock on every door possible, praying and waiting for hours—sometimes even days—just to get a single response or a lead. That is just the reality of this situation: if you don't put in the work yourself, you absolutely cannot expect anyone else to do it for you.
We are lucky to have such kindhearted people here, like Angela Wright and vividsailor7, who actually dedicate their precious time to helping us, and for that, I am deeply grateful; however, you don't encounter that level of compassion everywhere, which means we must continue to fight our own battles and conduct our own research.
As for our situation, things are stable; my father-in-law is feeling great, and he even managed to go handle his blood work entirely on his own today. His white blood cell count has naturally dropped again following the therapy, but at least now we know we can get those numbers back up quickly 🙂 We are all fighting this together, and for now, we are managing to maintain a semblance of a normal life (if you can even call it that). I’m keeping all of you in my thoughts; listen closely to the advice offered by these brilliant and selfless individuals, and I will talk to you all again very soon 🙂

Angela Wright said:kika, where exactly does she live? There are plenty of support groups here in the States that offer psychological help.
Sometimes with people like that, shock therapy works—just being blunt and laying it all out there. But ideally, you’d want to talk to a psycho-oncologist to get a better handle on what's actually going on and get some guidance on how to deal with her.
Try to contact Dr. Marijana Braš or Dr. Veljko Đorđević at the rib hospital to set up some consultations regarding this situation.

Well, she's getting treated in Chicago right now, though we're originally from the coast... Look, I know doctors exist and they send patients over to the rib, but the issue is she refuses to go. And honestly, I can't exactly give her a reality check because she's so "soft"—nobody has ever been blunt with her in her entire life. It's just confusing...🤷 Maybe I could visit someone and ask for advice, but I don't think it'll do much. I'm pretty sure nothing will work if she won't face reality herself...🤷

Kate Brooks2 said:I haven't been around for a few days, but man, you guys really got talking without me... 🙂 It’s honestly good to see some of the old faces popping back up here to show some support. Even better, though, is hearing that people are actually doing alright... like fadedtrucker5 and the rest of them...
Kate James38, I get it. I really do. It’s heavy, and honestly, if you're feeling like the doctors aren't cutting it, you're probably not alone—most of us feel that way. We’re stuck depending on them whether we like it or not, so if we can't beat the system, I guess we just have to learn how to play the game... My father-in-law went through the exact same thing. There was a stretch where he was so weak he couldn't even dream of dragging himself from one hospital to another or hunting down info. My husband and I had to step up and knock on every single door we could find. We spent countless hours praying, waiting, and chasing down people just to get a straight answer or some kind of lead... It’s just the way it goes. If you don't roll up your sleeves and fight for it yourself, you can bet nobody else is going to do it for you...
You’ve got some truly incredible people in this group, like Angela Wright and vividsailor7, who actually take time out of their lives to help us out, and I really am grateful for that. But let's be real—you don't find that kind of kindness everywhere. Most of the time, you're just left on your own to fight the battles and figure everything out yourself...
As far as our situation goes, things are holding steady. My brother-in-law is actually feeling pretty great—he even headed out to get his blood work done on his own today. His white blood cell count took another dip after the therapy, which was expected, but at least now we know exactly how to get those numbers back up quickly... 🙂 We’re all in this fight together, just trying to scrape by and maintain some semblance of a normal life—if you can even call it that anymore. I'm keeping my fingers crossed for every single one of you. Just listen to what these smart, capable people have to say... hopefully we'll be talking again soon... 🙂

Hey there...

Yeah, I get it... honestly, I haven't even had a second to catch my breath before being accused of having a heart attack... :🙂 From July 25th through August 29th... it’s just been one thing after another. Between losing my job, leaving the kid with our parents, people knocking on the door at all hours, literal foot-stomping frustration... just endless waiting. We were basically living out of our phones, juggling international calls and running ourselves ragged between different cities across the US, bouncing from hospital to hospital and train station to train station, constantly calling, checking, praying. Dealing with nothing but empty promises while watching our parents try to hold it all together... it's heavy. It's their kid we're talking about—my only brother, my little brother...
And then there’s my own mess... dealing with the American legal system. Between guardianship issues, alimony, and all those other bureaucratic nightmares... I won't even get into the rest of it...
Well... only partially...
Hey... just dropping in to say hi...

Kate Brooks2 said:I haven't been around for a few days. I guess you all really got talking. 🙂 It’s good to see some familiar faces coming back to offer support. Even better to hear that people like fadedtrucker5 are doing alright, I guess.
Kate James38, I imagine things are tough right now. Like most people, I guess you aren't exactly thrilled with the doctors either. We aren't exactly satisfied ourselves, but we're stuck depending on them, so if you can't beat them, you might as well just deal with it. My father-in-law went through a period where he was incredibly weak; he just couldn't be out chasing down doctors or hunting for info himself. My husband and I ended up knocking on every door we could find. We spent hours, sometimes even days, just waiting for calls or some kind of answer. That's just how it goes, I suppose. If you don't push for it yourself, nobody else is going to do it for you.
There are some truly decent people here, like Angela Wright and vividsailor7, who actually take the time to help us out. I guess I should say thanks for that. But you don't find this kind of kindness everywhere. Usually, you're just left on your own to fight the battles and do all the research.
As for us, things are stable. My brother-in-law is feeling great, actually—he even drove himself to get his blood work done today. His white blood cell count dropped again after the therapy, which is expected, I guess. But now...
Well, I guess we know we can get them back on their feet pretty quickly. 🙂 We're all just fighting this fight together, trying to maintain some semblance of a normal life—if you can even call it that. I guess I'm keeping my fingers crossed for everyone. Just listen to what these experts have to say, I suppose. Talk soon. 🙂

Well done. Truly impressive. 🙏
So glad everyone is doing well and that my father-in-law is feeling this good. It’s great news, I guess. Have you guys changed anything regarding his diet or treatment lately? Maybe?
Sending big, warm hugs to everyone. I guess. 🙂

Laura Long79 said:So, they’re getting treatment in the city now, coming all the way from the coast. Look, I get it—there are specialists available and she could be sent for a biopsy, but the issue is that she's flat-out refusing to go. It’s frustrating because I can't exactly call her out on it; she's just so incredibly soft and passive. It's like she's never had anyone in her entire life actually tell her the truth straight to her face. Honestly, I'm just left feeling totally bewildered.🤷 I could go visit someone and try to pick their brain, but honestly, I don't see that being effective. It’s hard to offer any real help when the person isn't even willing to understand themselves.🤷

There’s actually a standard practice where you sit down with a psychologist or psychiatrist, and they give you the blueprint—basically coaching you on how to approach her and what specific topics to bring up. It’s incredibly draining and difficult to pull off, but honestly, it might be the only way to handle it. Another option is bringing someone to visit who has actually survived the same diagnosis; seeing a survivor in person tends to lift people's spirits better than anything else.

fadedtrucker5 said:Bravo! Way to go! 🙏
I am honestly so relieved to hear that everyone is doing well and that your father-in-law is feeling this good—that is absolutely fantastic news. Have you guys introduced any new changes to his diet or medical regimen lately?
Sending huge, warm hugs to all of you 🙂

We have added just about everything under the sun, and I can tell you, it’s working; during the last cycle, his white blood cell count plummeted from 6.4 down to a terrifying 0.6, yet we managed to pull them back up to 9.8 in about ten days. 🙂
He’s drinking Noni juice, a homemade blend of beet, carrot, lemon, apple, and grapefruit, along with flaxseed oil and hemp seed oil, native propolis, and even propolis mixed with honey and various herbs. He’s also taking beta-glucan, ImmunoPower, and royal jelly (which he takes even during his treatment cycles). We’ve been grinding up flax, hemp, and pumpkin seeds to stir into soups, and we make sure he has plenty of homemade bread and yogurt. Every single day, he eats tons of fruit, especially berries. We have leaned heavily into green vegetables because they are the gold standard for health—lots of spinach, peas, Brussels sprouts, broccoli, and green beans. His absolute favorite thing is thick, blended vegetable soups; we just toss a bit of everything in there along with onion and carrot, simmer it, season it lightly, then blend it up with some ground seeds and a splash of heavy cream. Honestly, even we have started eating this soup ourselves because it is actually delicious, though you wouldn't think so by looking at it. 🙂

Kate Brooks2 said:We added a little bit of everything, I guess, and it actually worked. Last cycle, our white blood cell count plummeted from 6.4 down to a terrifying 0.6, but somehow we managed to pull them back up to 9.8 within about ten days. 🙂
She’s drinking Noni, some sort of juice blend—beet, carrot, lemon, apple, grapefruit—plus flaxseed oil and black cumin. There's native propolis, propolis mixed with honey and herbs, beta-glucan, ImmunoPower, even royal jelly (she takes that during her cycle too). She grinds up flax, black cumin, and pumpkin seeds to toss into soups, along with homemade bread and yogurt. Every day, she eats tons of fruit, mostly berries. We’ve loaded the diet with green veggies since they're supposedly the healthiest—spinach, peas, Brussels sprouts, broccoli, green beans... that sort of thing. Most of all, she loves thick soups made from all this stuff; we just throw a little bit of everything in a pot with onion and carrot, simmer it, season it lightly, then add ground seeds and some heavy cream and blend it. Even we started eating the soup because, I guess, it actually tastes good, though you wouldn't think so. 🙂

You really went all out on this—bravo. I guess hopefully things stay on track... maybe. 🙂

This new round of chemo is hitting me pretty hard, I guess. I've got this itchy rash all over my body—it's awful. I had it during the first round too, but it was way milder back then since I was on much higher doses of dexamethasone. On top of that, I'm running a fever of 102.2, so I'm just... 🙂
Maybe things will turn around. I guess it might get better. 😍

Everything seems to be holding steady on our end for the moment, but we just hit a fever of 102.2, which is identical to what you've been dealing with. I’m honestly at a loss as to whether this level of fever is truly dangerous or if there's anything more substantial we can do beyond administering Tylenol or trying those old-school vinegar compresses on the feet. Should we be heading straight to the ER?

Kate Brooks2 said:Everything seems fine on our end for now, but we just hit a fever of 102.2, exactly like yours. I have no idea if this is actually dangerous or what we should even do besides giving acetaminophen or maybe putting vinegar on the feet or something... Should we head to the ER?

Maybe the best move is to call 911 and ask... 🤷 I called around and eventually saw my primary care doctor, who barely even looked at me before saying it would pass. Apparently, it's just a normal reaction since the body is fighting back. Anyway, my temperature is sitting at 99.7 right now, and they told me not to break the fever until it hits 100.4 because the body needs to produce white blood cells...
You should probably call emergency services and ask what to do (just so dehydration doesn't set in or something). Good luck!

A fever climbing above 101.3°F that just won't budge even after taking Tylenol—especially in patients currently undergoing chemo—could be a red flag for an infection. It is absolutely critical to get to the hospital immediately to start antibiotics. If that infection takes hold, it can become fatal quite quickly.

Angela Wright said:A fever over 101°F that won't budge even after taking Tylenol—especially while undergoing chemo—could signal an infection. It’s vital to get to the hospital immediately for antibiotics. If an infection takes hold, things could turn fatal fast.

One injection of Voltaren brought mine down... Now I'm hovering between 98.6 and 99.7... I guess maybe I still need antibiotics? I'm asking because my doctor doesn't seem to have a clue.🙂

fadedtrucker5 said:My fever finally broke after that Voltren shot. Right now, I'm hovering somewhere between 98.6 and 99.7 degrees. Do I still need to be on antibiotics? I'm asking because my doctor can't seem to give me a straight answer on this one. 🙂

That’s probably a reaction you can manage pretty well with some Voltaren. It’s only when that fever climbs north of 101.3 and refuses to budge that you really need to worry. Still, I’d check in with your oncologist just to be safe. That was exactly the advice I got back when my mom was on Temodar.

Angela Wright said:That’s probably just a reaction you can manage with Voltaren. It's those fevers over 101.3 that won't budge that actually matter. Still, maybe ask the oncologist just to be safe. That's what they told me when Mom was on Temodar.

On my first day, I hit 102.2, but Voltaren knocked it down... The next day was 100.4, again handled by Voltaren. After that, it topped out at 99.7, and my doctor said there's no point even trying to break a fever like that since it's just the body fighting back.
The issue is my oncologist barely answers the phone, and honestly, he probably wouldn't bother dealing with this stuff over a call anyway. My hospital is all the way across town, and I can't get there until tomorrow—since that's his clinic day—by which time I'll likely be symptom-free. I finished my last chemo dose for this cycle today... I guess I'm just not sure what to do.😢

🤷Around here, the temperature drops down to about 98.2 degrees during the day. We're just sticking to acetaminophen and some apple cider vinegar in the evenings. As night approaches, the fever starts climbing again, so we bring it back down, and it’s just a constant cycle. He’s eating and drinking perfectly fine, which makes this whole thing incredibly confusing. After the first cycle, we ran into these exact same temperature issues, and now we're right back in the thick of it... hopefully, things stabilize soon. Most of the time, the fever seems to hover right around 99.3.

Kate Brooks2 said:🤷Here, the temperature drops down to 36.8 during the day. We just use some Tylenol and vinegar in the evening. As night approaches, the fever starts climbing again, so we bring it back down, and it’s just a constant cycle. He eats and drinks normally, which makes the whole thing even more confusing, I guess. After the first cycle, we dealt with this same fever issue, and now it's happening again... maybe it'll settle down soon. Usually, it hovers around 99.3.

Mine hits 99.7. 🤷
I didn't bother checking the temperature during the first round of therapy, so I can't really compare...

Evening!
I haven't been around for long... and I don't really have any good news to share... Since my last update, my friend has just been riding this roller coaster—one day she's doing okay, then she's crashing, then two days of feeling better, then back to being miserable, then okay, then just really, really bad...
Looking at the last two days, though, things have improved slightly... her headaches aren't hitting quite as hard, but the MRI results? Yeah, they aren't great.
She’s heading over to the Mayo Clinic tomorrow to see if they can try something with Gamma Knife...

Interesting read.

Emily Edwards19 said:The MRI results aren't looking good.
She’s heading to the Mayo Clinic tomorrow to see if they can try Gamma Knife...

I'm just hoping the target is still small enough for the Gamma Knife to work. If it's feasible, I think that could really buy her some precious time.